ORIGINAL ARTICLE

Associations between caregiving worries and psychophysical well-being. An investigation on home-cared cancer patients family caregivers

Veronica Zavagli1 & Elisabetta Miglietta2 & Silvia Varani1 & Raffaella Pannuti1 & Gianni Brighetti2 & Franco Pannuti1

Received: 2 February 2015 /Accepted: 13 July 2015 /Published online: 24 July 2015 # Springer-Verlag Berlin Heidelberg 2015

Abstract Purpose Caregiving to a family member with cancer might have health implications. However, limited research has in- vestigated the psychophysical health of home-cared cancer patients family caregivers. In a previous study, we have found that a prolonged worry in daily life is a crucial variable com- pared to caregivers’ psychophysical symptomatology. This investigation was designed to further examine the well-being of family caregivers, explore the domains of worry, and assess to what extent “content-dependent” worry could be associated with the caregivers’ health Methods The sample consisted of 100 family caregivers of oncological patients assisted at home. Participants completed a battery of self-report questionnaires (Penn State Worry Questionnaire, Worry Domain Questionnaire, Hospital Anxi- ety and Depression Scale, Family Strain Questionnaire Short Form, and Psychophysiological Questionnaire of the Battery CBA 2.0). Results The level of worry was medium-high among partici- pants, and caregivers worry more about their occupation and future. Depression, anxiety, and somatic symptomatology levels resulted mild, while strain level resulted high. Statistical analyses confirm the conclusions of the previous study, reveal- ing a significant positive correlation between worry levels and caregivers’ psychophysical health. Innovatively, it has been highlighted that who has higher scores of content-dependent

worry shows also higher levels of strain, somatic symptoms, anxiety, and depression Conclusions Not only trait-worry (“content-free” measure) but also content-dependent worry is associated with strain and negative health outcomes. People may worry about dif- ferent targets, and it might be useful to further investigate what are the specific worriers of family caregivers in order to pro- mote their physical and emotional well-being.

Keywords Caregiving . Family caregiver . Worry .

Psychophysical well-being . Cancer . Oncological home-care

Introduction

During the past years, substantial reforms took place in the health care systems concerning cancer, which is increasingly becoming a chronic disease.

The current health policy trend is to downsize acute-care hospitals and to transfer a greater portion of care at home [1], where family members form a substantial part of the care system. It leads an increased pressure mostly for family care- givers, bringing considerable responsibilities, needs, and problems [2].

A “family caregiver” is considered anyone (parents, adult children, spouses…) who provides any type of physical and emotional care for an ill loved one at home [3]. Thus, family cancer caregivers can be considered an extension of the health-care team, yet often, they take on a new role for which they may not feel adequately prepared and are nervous or overwhelmed about what is expected of them. In fact, they find themselves having to perform new and unfamiliar tasks (giving medicines, assisting with meals, and performing med- ical and nursing procedures) and may experience a number of mixed emotions including anxiety, anger, and sadness [3].

* Veronica Zavagli [email protected]

1 ANT Italia Foundation, via Jacopo di Paolo 36, Bologna, Italy 2 Department of Psychology, University of Bologna, viale Berti Pichat

5, Bologna, Italy

Support Care Cancer (2016) 24:857–863 DOI 10.1007/s00520-015-2854-y

Literature provides an abundance of studies about the nu- merous challenges encountered by family caregivers of pa- tients with cancer, all of which demonstrate that caregiving activity has an impact on physical and mental well-being and can negatively influence caregiver’s health outcome [4–14].

Specifically, different research studies have shown that caregivers of cancer patients are at high risk for development of different types of somatic complaints such as sleep distur- bances, weakness/fatigue and, less frequently, gastric prob- lems, loss of appetite, headache, and dizziness [4–12]. A study [9] has found that 95 % of the caregivers in the sample expe- rienced moderate to severe sleep disturbance as measured by subscales that assessed sleep quality, duration, efficiency, dis- turbances, and daytime function. Another research instead has demonstrated an association between caregiving and cardio- vascular and coronary heart diseases [10]. Rohlededer et al. (2009) have furthermore demonstrated that caregiving is also associated with variation in neurohormonal and inflammatory values, as a change in cortisol level and serum c-reactive pro- tein [11].

Caregiving does not limit his effect just on physical health. Several studies show how caregiver’s psychological well- being is also affected [4–7, 12–14]. In particular, sadness, irritability, anxiety, and depression are the most commonly reported problems for caregivers, with estimates for depres- sion at 39 % and for anxiety at 40 % [4]. In fact, one important feature of stressful events is that they trigger not only the physiological stress response but also the perseverative thoughts about these events.

Given the high pressure situations that caregivers usu- ally live is not surprising that they are likely to develop a lot of perseverative thoughts and worries. In fact, persev- erative cognition, as manifested in worry and rumination, is a common response to stress and moderates the health consequences of stressors because it can prolong stress- related affective and physiological activation, both before and after stressors [15, 16]. This happens because “wor- riers” people tend to repeat to themselves that things will get worse. In this way, worry or related manifestations of perseverative cognition theoretically leave the individual in a prolonged state of psychophysiological “action prep- aration,” and this prolonged state may have important long-term health consequences. As a result, perseverative cognition can be thought of as a mediator, or a final pathway, by which the stressor exercises its effects on the body’s systems. It does so by virtue of its propensity to prolong the stressor itself in a representational form continuing to activate the organism via the cardiovascu- lar, immune, endocrine, and neurovisceral systems [17, 18].

In a previous study [12], we have demonstrated that trait- worry (“content-free” measure) is frequent in cancer

caregivers’ daily life and that it is a crucial variable compared to caregivers’ well-being, determining important conse- quences in terms of psychophysical symptomatology.

However, worry is a broad term and people may worry about different things, and this has not been examined, as well as the relation between worry’s domains and somatic or psy- chological complain. Starting from these data, this investiga- tion aims to deeply examine the psychophysical well-being in a sample of family caregivers who provide care at home, ad- dressing the following objectives: (i) assessing the level of worry (both content-free and “content-dependent”), somatic symptomatology, depressive and anxious symptoms, and strain in the sample, (ii) investigating the amount of worry across different domains of everyday concern, and (iii) exam- ining the associations between worry (both content-free and content-dependent) and psychophysical well-being.

In our opinion, this theme is of great interest: in fact, people may worry about different targets, and it might be useful to further investigate what are the specific worriers of family caregivers and how they could be adversely associated with their health in order to promote their physical and emotional well-being.

Materials and methods

Study sample

Participants were enrolled in Bologna during the medical home-care request at the National Tumors Association (ANT).

The ANT is an Italian no-profit Foundation that provides since 1985 free medical, nursing, psychological, and social home care and support for cancer patients through its 20 on- cological hospitals at home in Italy [19].

An invitation to take part in the investigation was done to 112 caregivers. Two women and ten men declined (refusal rate=10.7 %) because they were not interested. Thus, our sample consisted of 100 family caregivers (73 female and 27 male) of oncological patients assisted at home by the ANT.

A summary of the characteristics of the subjects who took part in the study is presented in Table 1.

The socio-demographic data of our sample confirm the characteristics already observed in literature about cancer caregivers. In fact, this role is played mostly by women (70– 80 %) with an average age of 50–55 years [1].

Caregivers included in this study (i) were all living together with the patient, (ii) were regularly providing care to their adult cancer patient at home since the time of diagnosis (by managing the symptoms/pain of the patient at home, giving personal care, supporting the patient in the house and hospital/ bureaucratic settings, and providing emotional support), (iii) were not receiving any financial support for their caregiving

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work, and (iv) were 18 or older and played a key role in daily contact with physicians.

Procedure

Participants completed a battery of self-report questionnaires focusing on (i) trait-worry, (ii) domains of worry, (iii) somatic symptoms, (iv) depressive and anxious symptoms, and (v) strain. They underwent tests at the moment of oncological home-care request at the ANT Institute.

1. The Penn State Worry Questionnaire (PSWQ) [20] is the measure most frequently used to assess trait-worry in both clinical and nonclinical samples. It is a 16-item content- free measure of tendency to perseverative cognition, which assesses the generality, excessiveness, and uncon- trollability of worry. Scores range between 16 and 80, with higher scores indicating greater tendency to worry (cutoff=44±11). This scale has shown to possess high internal consistency and good test-retest reliability [20].

2. The Worry Domain Questionnaire (WDQ) [21] is a 25- item instrument whose development was influenced by the theory of Eysenck, who postulated organized cluster of worry related to information in long-term memory. Thus, it is a content-dependent measure, and it quantifies the amount of worry across five domains of everyday concern (relationships, lack of confidence, aimless future, work, and financial issues). Each item is rated on a five- point Likert scale. WDQ produces a profile of worry in the different domains and also a total score that is the sum of partial scores of each dimension. The partial score for each subscale is between 0 and 20, and the maximum total score corresponds to 100, with higher numbers representing greater worries. It is a questionnaire easy to

understand, and different studies show that it has good internal consistency, test-retest reliability, and validity [21, 22].

3. The Psychophysiological Questionnaire (QPF-R) [23] in- quires about 30 somatic symptoms accounting for the majority of physical complaints. For scoring purpose, re- sponses are coded from 1 (“no feeling”) to 4 (“a strong feeling”); thus the total score ranged from 30 to 120, with higher numbers representing greater symptomatology. This scale has adequate psychometric properties [23].

4. The Hospital Anxiety and Depression Scale (HADS) [24, 25] is a 14-item self-report screening instrument for anx- iety and depression in a nonpsychiatric population. Re- sponses are based on the relative frequency of symptoms over the past week, using a four-point scale ranging from 0 (not at all) to 3 (very often indeed). Responses are summed to provide separate scores for anxiety and de- pression symptomatology with possible scores ranging from 0 to 21 for each scale. A study [25] provided nor- mative data for nonclinical samples, suggesting to use a cutoff level of 10/11 for both scales. A score of 0 to 7 indicates a lack of depressive/anxious symptoms. A score between 8 and 10 suggests a “borderline” case, 11 to 15 suggests moderate symptoms, and a score greater than 16 indicates the presence of severe symptoms. The HADS is quick and easy to complete and score, and it has established reliability and validity [24–26].

5. The Family Strain Questionnaire Short Form (FSQ-SF) [27] is a 30 yes-no items instrument designed to screen caregiver-related problems. The total number of “yes” responses is the indicator of caregiver strain, and higher scores correspond to higher and potentially dangerous levels of stress. In fact, the FSQ-SF items are listed in order of severity of stress and grouped into areas of in- creasing psychological risk (Area OK, 0–6 points: the caregiver is coping quite well with the situation; Area R- Recommended, 7–12 points: the caregiver is coping suf- ficiently well but the scale indicates some maladjustment, so a psychological consultation should be recommend in case the symptoms get worse; Area SR-Strongly Recom- mended, 13–20 points: the caregiver presents an evidence of strain which requires psychological examination and counseling; Area U-Urgent, 21–30 points: the caregiver presents great strain and high psychological risk and it is urgent that she/he is seen by a psychologist or/and by a psychiatrist). It is a questionnaire quick to use, and it has satisfactory psychometric properties.

In addition, socio-demographic data were retrieved (sex, age, marital status, education level, etc.).

The investigation received a formal approval by the Re- search Ethical Committees of the Department of Psychology of the University of Bologna and of the ANT Italia

Table 1 Study population Caregivers

N 100

Age [years] 49.8±12.8

Gender (male/female) 27/73

Caregiver role

Husband or wife [%] 17

Son or daughter [%] 74

Other relatives [%] 9

Caregiving duration [months]

17.5±34.3

Employment [%] 86

Years of education

5 years [%] 4

8 years [%] 23

13 years [%] 54

≥16 years [%] 19

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Foundation. Participants gave informed written consent for participation to the investigation, data analysis, and data publication.

Statistical analyses

All analyses were conducted using SPSS 19 for Windows, and differences were considered statistically significant if the p value was below 0.05. Violation of assumptions (normal dis- tribution and equal variance for all groups) was assessed by applying the Kolmogorov-Smirnov test for normality and the Levene homogeneity of variance test. Since variables were normally distributed and the size of the sample was large, parametric analyses were run.

Simple parametric correlation (Pearson) was used to assess the statistical link between worry levels, somatic symptom- atology, depressive and anxious symptoms, and strain. One- way analysis of variance (ANOVA) was performed for com- parisons of means between groups (worrying caregivers vs not worrying caregivers).

Results

The level of trait-worry resulted medium-high among infor- mal caregivers (Mean=53.56; Sd=11.09).

Scores of WDQ showed medium level of content- dependent worry (Mean=21.51; Sd=13.59) and demonstrated that the caregivers worry more about their occupation (Mean= 5.70; Sd=3.54) and their future (Mean=5.42; Sd=4.21) (see Fig. 1).

Furthermore, the informal caregivers showed medium-high levels of depression (Mean=9.22; Sd=3.97), anxiety (Mean= 10.37; Sd=3.77), and somatic symptomatology (Mean= 45.62; Sd=12.34). As shown by the scores of HADS, 46 and 35 subjects had a score higher than 11, respectively, in the scale of anxiety and depression, that indicates the presence of moderate and severe symptoms.

The level of strain appeared to be elevated in the sample (Mean=19.18; Sd=7.23), and only 16 subjects were placed in areas that showed an adequate coping (Area OK, 0–6 points, and Area R-Recommended, 7–12 points—see Procedure section).

The results of simple parametric correlation (Pearson) are shown in Table 2. The PSWQ had a strong, positive, and significant correlation with the WDQ (r=.543, p=0.000). Scores of PSWQ (trait-worry) and scores of WDQ (content- dependent worry) had a moderate, positive, and significant correlation with the physical symptomatology, the depressive and anxious symptoms, and the strain’s level (Fig. 2).

The duration of caregiving did not correlate with worry (both content-free and content-dependent) and measures of psychophysical well-being.

A one-way ANOVAwas conducted to investigate if partic- ipants with high scores of trait-worry (worrying caregivers) showed also high levels of worry across the five domains of the WDQ. It revealed that worrying caregivers showed also higher levels of worry about relationships (F(1, 98)=29.033, p=0.000), lack of confidence (F(1, 98)=23.113, p=0.000), aimless future (F(1, 98)=28.979, p=0.000), and work (F(1, 98)=12.527, p=0.001), but not about financial issues (F(1, 98)=.291, p=0.591).

Conclusion and discussion

The main aim of the present investigation was to further ex- amine the well-being of family caregivers, investigate for the first time the amount of worry across different domains of everyday concern, and assess to what extent worry (both content-free and content-dependent) could be adversely asso- ciated with the caregivers’ psychophysical health.

Innovatively, the results show that both scores on the Penn State Worry Questionnaire (trait-worry) and scores on the Worry Domains Questionnaire (content-dependent worry) have a moderate, positive, and significant correlation with the physical symptomatology, the depressive and anxious symptoms, and the strain’s level. These findings are certainly relevant because they connect worry with a greater presence of psychophysical symptomatology, confirming the conclu- sions of a previous study [12]. In that work, we have demon- strated that worry is frequent in cancer caregivers’ daily life, and it is a crucial variable compared to caregivers’ health, being correlated with physical symptoms, depression, and dis- comfort. These conclusions are also consistent with previous research studies [15–18] documenting that perseverative cog- nition might act directly on somatic disease via enhanced ac- tivation of the cardiovascular, immune, endocrine, and neurovisceral systems. In fact, perseverative cognition may contribute to ill health by expanding the temporal duration of a stressor beyond the traditional reactivity period to include

Fig. 1 Profile of family caregivers’ worry in the different domains (relationships, lack of confidence, aimless future, work, and financial issues)

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Table 2 Parametric correlation (Pearson)

N=100

PSWQ WDQ1 WDQ2 WDQ3 WDQ4 WDQ5 WDQ TOT. HADS (A) HADS (D) FSQ QPF-R

PSWQ Correlation – – – – – – – – – – –

Sig.

WDQ1 Correlation .529 – – – – – – – – – –

Sig. .000

WDQ2 Correlation .494 .717 – – – – – – – – –

Sig. .000 .000

WDQ3 Correlation .506 .617 .538 – – – – – – – –

Sig. .000 .000 .000

WDQ4 Correlation .381 .433 .551 .498 – – – – – – –

Sig. .000 .000 .000 .000

WDQ5 Correlation .106 .241 .225 .502 .251 – – – – – –

Sig. .294 .016 .024 .000 .012

WDQ TOT. Correlation .543 .798 .808 .853 .728 .572 – – – – –

Sig. .000 .000 .000 .000 .000 .000

HADS (A) Correlation .632 .331 .335 .522 .235 .153 .429 – – – –

Sig. .000 .001 .001 .000 .019 .128 .000

HADS (D) Correlation .521 .314 .375 .448 .279 .113 .415 .725 – – –

Sig. .000 .001 .000 .000 .005 .261 .000 .000

FSQ Correlation .493 .493 .486 .431 .234 .223 .497 .676 .618 – –

Sig. .000 .000 .000 .000 .019 .026 .000 .000 .000

QPF-R Correlation .562 .249 .275 .357 .279 .065 .333 .672 .578 .535 –

Sig. .000 .012 .006 .000 .005 .522 .001 .000 .000 .000

In bold are the significant results

PSWQ scores for the Penn State Worry Questionnaire, WDQ1 scores for the Worry Domain Questionnaire domain 1, relationships, WDQ2 scores for the Worry Domain Questionnaire domain 2, lack of confidence, WDQ3 scores for the Worry Domain Questionnaire domain 3, aimless future, WDQ4 scores for the Worry Domain Questionnaire domain 4, work, WDQ5 scores for the Worry Domain Questionnaire domain 5, financial issues, WDQ TOTscores for the WDQ total score, HADS (A) scores for the anxiety subscale of the Hospital Anxiety and Depression Scale, HADS (D) scores for the depression subscale of the Hospital Anxiety and Depression Scale, FSQ QPF-R scores for the Psychophysiological Questionnaire

Fig. 2 BContent-dependent^ worry (WDQ total score) resulted associated with physical symptoms (QPF-R total score)

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anticipation and recovery, thereby being the source of prolonged physiological activation.

Our findings add new information to the previous litera- ture, showing that the family caregivers worry more about their work/occupation and their aimless future. Work items include “I don’t work hard enough,” “I leave work unfin- ished,” “I make mistakes at work,” “I will not keep my work- load up to date,” and “I will be late for an appointment.” Aimless future items include “my future job prospects are not good,” “I’ll never achieve my ambitions,” “I have no concentration,” “life may have no purpose,” and “I haven’t achieved much.” More than half (86 % percent) of the care- givers included in this investigation are employed either full time or part time, juggling work with their caregiving role. We can hypothesize that, given the prolonged economic down- turn, it is natural that family caregivers worry a lot about their occupation and future, mainly for fear of losing their jobs upon which their futures depend. The findings suggest that the domain of aimless future resulted positively and signifi- cantly associated with the caregivers’ psychophysical health (physical symptomatology, depressive and anxious symp- toms, and level of strain). So, we were also able to identify a specific worry that might be a point to start to support family caregivers.

From this point of view, the investigation is particularly innovative and differs from previous studies conducted. Per- haps not surprisingly, different studies have reported that fam- ily caregivers experience a range of psychological complica- tions. They have found rates of anxiety and depression among caregivers that are comparable to [28–30] and even surpass [31, 32] those of the patients for whom they provide care. Few studies have also suggested that anxiety is not only present in both patients and caregivers but also shared by the dyad [33]. However, there are no works in the literature concerning the worrisome thinking as a response to stressful events in care- givers or in persons who are facing dramatic life events nor even investigating the amount of worry across different do- mains of everyday concern.

Furthermore, these results have practical and operative im- plications for advancing public health research and practice. Therapeutic models need to increase the access and availabil- ity of appropriate, timely, and on-going education and support programs for caregivers in order to meet their caregiving re- sponsibilities. Different studies [34, 35] have reported that interventions that were integrative in their approach (i.e., com- bining elements of psychoeducation and support or commu- nication skills training) conferred multiple benefits for family caregivers. The same research highlighted the clinically sig- nificant benefits of problem solving and skills building inter- ventions, cognitive-behavioral therapy (CBT) and Interper- sonal Therapy (IPT) for both cancer patients and their care- givers with symptoms of anxiety and depression. Because worrying is a mental habit that can be broken, it would be

recommended that the “worriers” family caregivers must be identified early and treated properly, so that they can maintain their own health and provide the best care possible to the patient. In this regard, considerable progress has been made recently in the design and scientific evaluation of effective treatments for worry [36]. Although these techniques are mostly based on CBT, basic research is taking into consider- ation other factors to be included in treatment (for example, mindfulness techniques and elements of interpersonal thera- py). In particular, paying attention to present-moment reality, the use of mindfulness-based therapy (MBT), which includes both mindfulness-based stress reduction (MBSR) and mindfulness-based cognitive therapy (MBCT), may be of par- ticular importance to family caregivers [35]. In fact, formal periods of mindfulness practice can serve as a restorative ref- uge into the present moment, free from the inexorable worries of life, presumably by targeting rumination and worry, both considered to be respectively maintaining processes across mood and anxiety disorders.

Obviously, this is a preliminary investigation, and limita- tions must be acknowledged. First, caregivers may have worries about other domains not included in the WDQ, which is not built specifically for the care situation and focuses on issues and concerns related solely to the subject himself and his own life, not to the loved one, the disease, and what it involves. However, measuring worry about particular health events is up in the air, and none of the existing scales is per- fect. Second, it would also be appropriate to analyze a wider sample and to compare levels of caregivers’ psychophysical health to those of a sample without caregiving context in order to obtain more accurate results that will be more easily exten- sible to the population. Future work might analyze more in detail caregivers’ unmet needs and specific worries: it would be a promising and efficient way to integrate family members of cancer patients in the program of supportive services, pro- moting their physical and emotional well-being.

In conclusion, the present investigation makes a relevant contribution to the literature highlighting that caring for a loved one suffering from cancer can lead to prolonged and intense worry that is associated with psychophysical symp- tomatology. This topic is of great interest because family care- givers have a legitimate and crucial role in the cancer home- care team, and even if these are tough economic times, supporting them is one of the most cost-effective long-term care investments we can make. In fact, as long as caregivers are able to provide care and effectively attend to the physical and emotional needs of the cancer patient, they are often able to delay costly nursing home placements and reduce reliance on public health programs.

Acknowledgements We would like to thank all the family caregivers that participated in the study. This work was possible only because they gave their time and shared their experiences with us.

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Conflict of interest The authors declare that they have no conflict of interest.

Informed consent Informed consent was obtained from all individual participants included in the study.

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ASSOCIATED CONTENT

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DOI: https://doi.org/10.1200/JOP. 2017.028498; published online ahead of print at jop.ascopubs.org on January 30, 2018.

Price of Cancer Care and Its Tax on Quality of Life George Tran and S. Yousuf Zafar

Although innovations in cancer therapy have led to less toxic treatments, these new drugscomewithhigherpricetags,withmany medications costing more than $100,000 annually.1,2 As costs increase, a larger bur- denisbeingplacedonpatientsintheformof higher out-of-pocket expenses, deductibles, coinsurance, and copayments.3 The increas- ing treatment-related costs place a significant strain on patients and their families. A growing body of evidence suggests that the financial burden of cancer treatment has a toxic impact on many aspects of patients’ lives, including their financial well-being, health-related quality of life, and mortality.

A cancer diagnosis can also have sig- nificant ramifications for patients’ financial well-being. Hospitalizations, rising insur- ancepremiums,prescriptiondrugcosts, lost work productivity and income, and annual out-of-pocket expenses that often exceed $5,0004 can ultimately result in untenable

financial burden, even for patients with insurance, and—in a small minority— bankruptcy. Indeed, financial insolvency following a cancer diagnosis is a risk factor for mortality.5 Furthermore, patients who are dealing with significant financial bur- dens are more likely to ration their care or forego treatment altogether.6 Some patients delay or discontinue their medications,7

take less medication than prescribed, use over-the-counter medications as an alter- native, or take medications prescribed for others to alleviate their financial burden.8

Patients with cancer also experience significant alterations in their health-related quality of life (HRQOL) as a result of fi- nancial toxicity. A study by Park and Look9

examines the relationship between objective measures of financial burden, HRQOL, and psychological health of patients with cancer in the United States. Financial burden was estimated by calculating the ratio of out-of- pocket expenditures to family income, with high financial burden defined as out-of- pocket expenditures exceeding either 10% or 20% of family income. Their findings illustrate the inverse relationship between high financial burden and HRQOL, with a stronger effect observed on physical health than on mental health.9 The patients studied were also more likely to experience non- specific psychological distress, were older, were more likely to be uninsured, and often had more chronic conditions than patients who did not experience high financial bur- den. These results highlight the powerful relationship between financial hardship and HRQOL. This study builds upon the results of previous studies that have shown that

patients who report greater financial bur- den also report poorer general quality of life, physical health, mental health, and social life.10-13

The interaction between the economic repercussions of cancer care and quality of life requires further exploration. The re- lationship between financial burden and quality of life is probably multifactorial and perhaps even bidirectional. One pos- sible explanation for this relationship is that patients who experience financial burdens are less able to afford necessary care and thus experience greater physical and mental stress. To address their shortage of finan- cial resources, patients may alter their life- style by reducing leisure activities, spending

Copyright © 2018 by American Society of Clinical Oncology Volume 14 / Issue 2 / February 2018 n jop.ascopubs.org 69

Editorial

less on basic necessities such as food and clothing, depleting their savings, or selling off possessions or property.8 All of these compensatory strategies may result in poorer sub- jective well-being among patients with cancer. However, it may also be true that patients with worse quality of life at baseline (ie, those who are sicker and have worse outcomes) may deplete their financial resources faster and thus expe- rience a greater financial burden.14

Coping mechanisms in response to cancer diagnoses and financial burdens may also play a role in mediating the re- lationship between HRQOL and financial toxicity. Perhaps patients who exhibit poor coping consequently experience greater financial burdens. Patients can use a myriad of coping mechanisms that are generally grouped into two major cate- gories: emotion-focused or problem-focused coping, as his- torically distinguished by Lazarus and colleagues (Lazarus and Folkman15 and Lazarus et al16). Emotion-focused coping is the regulation of internal conflicts by methods such as positively reappraising the situation, avoiding thoughts related to the stressor, turning to religion, or using humor. Problem-focused coping involves managing the external components of a sit-

uation. In patients with cancer, this may manifest as a strong desire to remain compliant with their medication regimen, seeking information about other treatments, or viewing their illness as a challenge to be surmounted. Patients often use a variety of coping mechanisms, but studies have found that patients who identified their cancer diagnosis as a threat tended to use problem-focused mechanisms, whereas those who viewed their diagnosis as a harm or a loss were more likely to implement emotion-focused or avoidance strategies.17 It has been shown that patients with advanced cancer use emotion- focused coping more often, perhaps because they no longer have the physical ability to deal with their disease via problem-focused mechanisms.18 When faced with financial hardships, patients were more likely to use problem-focused strategies.19 Further investigation into the relationship be- tween patients’ ability to cope with their diagnosis and fi- nancial burdens is necessary to better characterize how they affect one another.

Although research continues to emerge on the impact of financial toxicity, there remains a great deal of work to be done in terms of finding the best solutions to implement and identifying which patient populations will benefit the most. Interventions need to be targeted toward reducing financial toxicity, screening for both psychosocial distress and fi- nancial distress, and providing better psychosocial support

for patients. The first step to reducing financial toxicity is to routinelyincludecostdiscussionsaspartofapatient’s care. In a study of 484 patients from academic and community general medicine practices, 63% of participants expressed a desire to discuss out-of-pocket costs of treatment with their physicians, but only 15% of those patients reported that they actually had those discussions.20 In patients with cancer, data have indi- cated that concerns about both present and future costs are prevalent, even among those with insurance.21 Furthermore, studies suggest that cost discussions can reduce out-of-pocket costs for patients, mostly without changing care.22 Until both providers and patients engage in cost discussions, the eco- nomic impact of cancer care will continue to be an under- addressed issue.

Improved screening for both psychosocial and financial distress could benefit patients by allowing for early identifi- cation of toxicities from treatment that extend beyond phys- ical manifestations. This could lead to better allocation of resources to provide the appropriate interventions, giving psychosocial and financial support for patients in need. As discussed by Park and Look,9 patients with cancer who have

high financial burden demonstrated greater nonspecific psy- chological distress. It is crucial to address psychosocial distress because it may lead to worse quality of life and poorer treatment adherence.23 However, the challenge lies in finding the ap- propriate screening tools and standardizing their use among providers. Validated patient-reported measures have been de- veloped for financial distress screening, but those measures are long and require scoring.24 Often, a simple, brief question, such as, “Are you ableto afford yourcare?” can go a long way toward identifying previously unnoticed financial strain.

The sequelae of financial toxicity are myriad and play a crucialroleinpatientoutcomesandqualityoflife.Asdrugcosts continue to rise and as patients are increasingly expected to shoulder the burden, we must find novel ways to mitigate this issue to provide patients with the best possible disease out- come. Until we find long-term policy solutions that reduce drug prices and improve insurance design, the solution lies in the patient-physician relationship.

Authors’ Disclosures of Potential Conflicts of Interest Disclosures provided by the authors are available with this article at jop.ascopubs.org.

Author Contributions Conception and design: All authors Manuscript writing: All authors Final approval of manuscript: All authors Accountable for all aspects of the work: All authors

70 Volume 14 / Issue 2 / February 2018 n Journal of Oncology Practice Copyright © 2018 by American Society of Clinical Oncology

Tran and Zafar

Correspondingauthor:S.YousufZafar,MD,MHS,DukeCancerInstitute,2424 Erwin Rd, Suite 602, Room 6046, Durham, NC 27705; e-mail: yousuf.zafar@ duke.edu.

References 1. Experts in Chronic Myeloid Leukemia: The price of drugs for chronic myeloid leukemia (CML) is a reflection of the unsustainable prices of cancer drugs: From the perspective of a large group of CML experts. Blood 121:4439-4442, 2013

2. Mailankody S, Prasad V: Five years of cancer drug approvals: Innovation, efficacy, and costs. JAMA Oncol 1:539-540, 2015

3. Goldman DP, Joyce GF, Zheng Y: Prescription drug cost sharing: Associations with medication and medical utilization and spending and health. JAMA 298:61-69, 2007

4. Bernard DS, Farr SL, Fang Z: National estimates of out-of-pocket health care expenditure burdens among nonelderly adults with cancer: 2001 to 2008. J Clin Oncol 29:2821-2826, 2011

5. Ramsey SD, Bansal A, Fedorenko CR, et al: Financial insolvency as a risk factor for early mortality among patients with cancer. J Clin Oncol 34:980-986, 2016

6. Kent EE, Forsythe LP, Yabroff KR, et al: Are survivors who report cancer-related fi- nancialproblems morelikelyto forgoordelaymedicalcare?Cancer119:3710-3717,2013

7. Kaisaeng N, Harpe SE, Carroll NV: Out-of-pocket costs and oral cancer medication discontinuation in the elderly. J Manag Care Spec Pharm 20:669-675, 2014

8. Zafar SY, Peppercorn JM, Schrag D, et al: The financial toxicity of cancer treat- ment: A pilot study assessing out-of-pocket expenses and the insured cancer patient’s experience. Oncologist 18:381-390, 2013

9. Park J, Look KA: Relationship between objective financial burden and the health- related quality of life and mental health of cancer patients. J Oncol Pract 14: e113-e121, 2018

10. Fenn KM, Evans SB, McCorkle R, et al: Impact of financial burden of cancer on survivors’ quality of life. J Oncol Pract 10:332-338, 2014

11. Zafar SY, McNeil RB, Thomas CM, et al: Population-based assessment of cancer survivors’ financial burden and quality of life: A prospective cohort study. J Oncol Pract 11:145-150, 2015

12. Delgado-Guay M, Ferrer J, Rieber AG, et al: Financial distress and its associations with physical and emotional symptoms and quality of life among advanced cancer

patients. Oncologist 20:1092-1098, 2015

13. Kale HP, Carroll NV: Self-reported financial burden of cancer care and its effect on physical and mental health-related quality of life among US cancer survivors.

Cancer 122:283-289, 2016

14. Lathan CS, Cronin A, Tucker-Seeley R, et al: Association of financial strain with symptom burden and quality of life for patients with lung or colorectal cancer. J Clin

Oncol 34:1732-1740, 2016

15. Folkman S, Lazarus RS: An analysis of coping in a middle-aged community sample. J Health Soc Behav 21:219-239, 1980

16. Folkman S, Lazarus RS, Dunkel-Schetter C, et al: Dynamics of a stressful en- counter: Cognitive appraisal, coping, and encounter outcomes. J Pers Soc Psychol 50:

992-1003, 1986

17. Franks HM, Roesch SC: Appraisals and coping in people living with cancer: A meta- analysis. Psychooncology 15:1027-1037, 2006

18. Thomsen TG, Rydahl-Hansen S, Wagner L: A review of potential factors relevant to coping in patients with advanced cancer. J Clin Nurs 19:3410-3426, 2010

19. Head B, Harris L, Kayser K, et al: As if the disease was not enough: Coping with the financial consequences of cancer. Support Care Cancer https://doi.org/10.1007/

s00520-017-3918-y [epub ahead of print on October 11, 2017]

20. Alexander GC, Casalino LP, Meltzer DO: Patient-physician communication about out-of-pocket costs. JAMA 290:953-958, 2003

21. Stump TK, Eghan N, Egleston BL, et al: Cost concerns of patients with cancer. J Oncol Pract 9:251-257, 2013

22. Zafar SY, Chino F, Ubel PA, et al: The utility of cost discussions between patients with cancer and oncologists. Am J Manag Care 21:607-615, 2015

23. Mehnert A, Hartung TJ, Friedrich M, et al: One in two cancer patients is sig- nificantly distressed: Prevalence and indicators of distress. Psychooncology, 2017

https://doi.org/10.1002/pon.4464 [epub ahead of print on May 31, 2017]

24. de Souza JA, Yap BJ, Wroblewski K, et al: Measuring financial toxicity as a clinically relevant patient-reported outcome: The validation of the COmprehensive Score for

financial Toxicity (COST). Cancer 123:476-484, 2017

Copyright © 2018 by American Society of Clinical Oncology Volume 14 / Issue 2 / February 2018 n jop.ascopubs.org 71

Editorial

AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Price of Cancer Care and Its Tax on Quality of Life

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I 5 Immediate Family Member, Inst 5 My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO’s conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jop/site/ifc/journal-policies.html.

George Tran No relationship to disclose

S. Yousuf Zafar Employment: Novartis (I) Stock or Other Ownership: Novartis (I) Consulting or Advisory Role: AIM Specialty Health Travel, Accommodations, Expenses: Genentech

Volume 14 / Issue 2 / February 2018 n Journal of Oncology Practice Copyright © 2018 by American Society of Clinical Oncology

Tran and Zafar

Used with permission. Copyright © American Society of Clinical Oncology 2018. All rights reserved.

N A S W S t a n d a r d s f o r

Social Work Practice

i n H e a l t h C a r e S e t t i n g s

N A T I O N A L A S S O C I A T I O N O F S O C I A L W O R K E R S

N A S W S t a n d a r d s f o r

Social Work Practice

i n H e a l t h C a r e S e t t i n g s

National Association of Social Workers

Darrell P. Wheeler, PhD, ACSW, MPH

President

Angelo McClain, PhD, LICSW

Chief Executive Officer

Health Care Standards Expert Panel

Lisa E. Cox, PhD, LCSW, MSW

Terrie Fritz, LCSW

Virna Little, PsyD, LCSW-R

Shirley Otis-Green, MSW, ACSW, LCSW

Anthony Yamamoto, LCSW

NASW Staff

Stacy Collins, MSW

©2016 National Association of Social Workers. All Rights Reserved.

Contents

5 Introduction

9 Goals

10 Definitions

14 Guiding Principles

16 Standard 1. Ethics and Values

17 Standard 2. Qualifications

18 Standard 3. Knowledge

22 Standard 4. Cultural and Linguistic Competence

24 Standard 5. Screening and Assessment

27 Standard 6. Care Planning and Intervention

29 Standard 7. Advocacy

31 Standard 8. Interdisciplinary and Interorganizational

Collaboration

33 Standard 9. Practice Evaluation and Quality

Improvement

34 Standard 10. Record Keeping and Confidentiality

37 Standard 11. Workload Sustainability

39 Standard 12. Professional Development

40 Standard 13. Supervision and Leadership

42 References

45 Acknowledgments

5

Introduction

Since the early 20th century, social work has been an integral component of the U.S. health care system, and the profession continues to play a leadership role in the psychosocial aspects of health care. Today, social workers are present in settings across the health care continuum, including prevention and public health, primary and acute care, specialty care, rehabilitation, home health, long-term care, and hospice. Professional social workers provide services to individuals and families throughout the life span, addressing the full range of biopsychosocial–spiritual and environmental issues that affect well-being. Social work’s strengths-based, person-in- environment perspective provides the contextual focus necessary for client- and family-centered care and is unique among the health professions.

A hallmark of social work’s commitment to health and well-being is the profession’s continued focus on the issue of health care inequality in the United States. People living in poverty and communities of color continue to experience disproportionately higher rates of acute and chronic illness, due to unequal access to health care services, lack of health insurance coverage, poverty, discrimination, and other social determinants of health. Social workers recognize that reducing health disparities can only be accomplished by addressing the biopsychosocial–spiritual needs of individuals and families, as well as the systemic issues that contribute to poor health outcomes.

6

The Evolving U.S. Health Care System

The U.S. health care system is in an era of unprecedented change. In recent years, the nation has witnessed continuing high rates of uninsurance (13 percent of the U.S. population, or 42 million people, were uninsured in 2013 [U.S. Census Bureau, 2014]), inadequate coverage, escalating health care costs, erosion of employer-based health insurance, and increasing demand for health care services as the baby boom generation enters retirement. The Patient Protection and Affordable Care Act (ACA) (2010) was designed to address these issues. The goal of the ACA is to expand access to affordable and comprehensive health coverage, improve patient outcomes, and increase the efficiency and cost-effectiveness of the health care delivery system. The ACA invests heavily in care delivery models that promote coordination of acute and postacute care and greater integration of primary and behavioral health services.

Challenges for the Profession

Their long-standing role in the health system notwithstanding, social workers practicing in health care settings today face significant challenges. Ongoing changes in the financing and delivery of health care and a shortage of social work effectiveness data have contributed to the reduction of social work services in certain health care settings. Increasingly, health care social workers are supervised by individuals without social work degrees, and tasks previously performed by social workers are often assigned to other personnel, including nurses, paraprofessionals, and volunteers, in an effort to reduce costs.

7

Opportunities for Social Work in the ACA Era

Despite these challenges, health care social work is poised to experience a resurgence in the ACA era. With its emphasis on the “triple aim”—improving the patient experience of care (including quality and satisfaction), improving the health of populations, and reducing the per capita cost of health care (Institute for Healthcare Improvement, 2014)—the ACA strengthens social work’s traditional role in health care and offers new opportunities for the profession.

The ACA promotes care delivery models, such as the patient-centered medical home (PCMH) and accountable care organization (ACO), which are designed to improve health outcomes and control health care costs. To succeed, these models will rely on social workers skilled and competent in health care navigation, behavioral and mental health integration, chronic care management, and care coordination, among other skills. The aging of the population will necessitate a need for social workers skilled in transitioning patients between different settings and levels of care and managing complex discharges.

The anticipated influx of patients into the health care system resulting from the ACA insurance coverage expansion will increase the need for social workers who are educated and trained in working with diverse populations and with clients who have challenging physical, behavioral, and mental health needs. Greater emphasis on community-based care will require social workers skilled in reducing nonmedical barriers to health care access. As important, expanded social work involvement

8

in these roles and settings presents an opportunity to advance the evidence base for the profession.

Prevention and public health, traditional social work roles, have gained renewed importance under the ACA. With its ecological viewpoint, the social work profession is well-positioned to take a leadership role in new ACA prevention initiatives, including workplace wellness, home visiting, and smoking cessation programs. Social workers are also well positioned to participate in macro-level prevention efforts, such as policy change to reduce obesity, which can improve population outcomes more efficiently than individual-actions at the clinical care level. Furthermore, new research fields, particularly patient-centered outcomes research and community-based participatory research, offer an opportunity for social workers to contribute to the prevention and public health research base.

Purpose of the Standards for Social Work Practice in Health Care Settings

These standards articulate the necessary knowledge and skills health care social workers should possess to deliver competent and ethical services in today’s health care environment; provide benchmarks for quality social work practice for use by health care employers; and assist policymakers, other health professionals, and the public in understanding the role of professional social workers in health care settings. These standards are intended to guide social work practice and may be applied differently, as appropriate, to different health care settings.

9

Goals

The specific goals of the standards are to

� Ensure that social work practice in health care settings is guided by the NASW Code of Ethics (NASW, 2008)

� Enhance the quality of social work services provided to clients and families in health care settings

� Advocate for clients’ rights to self- determination, confidentiality, access to supportive services and resources, and appropriate inclusion in decision making that affects their health and well-being

� Encourage social work participation in the development, refinement, and integration of best practices in health care and health care social work

� Promote social work participation in systemwide quality improvement and research efforts within health care organizations

� Provide a basis for the development of continuing education materials and programs related to social work in health care settings

� Promote social work participation in the development and refinement of public policy at the local, state, federal, and tribal levels to support the well-being of clients, families, and communities served by the rapidly evolving U.S. health care system

� Inform policymakers, employers, and the public about the essential role of social workers across the health care continuum.

10

Definitions

Social Worker

Within the United States, a social worker is an individual who possesses a baccalaureate or master’s degree in social work from a school or program accredited by the Council on Social Work Education. Although all 50 states and the District of Columbia license or certify social workers, licensure and certification laws vary by state. Each social worker should be licensed or certified, as applicable and required, at the level appropriate to her or his scope of practice in the practitioner’s jurisdiction(s).

Client

Client refers to the “individual, group, family, or community that seeks or is provided with professional services” (Barker, 2013, p. 73). For purposes of these standards, the term “client” refers to an individual. The term “patient” is more commonly used by social workers employed in health care settings.

Biopsychosocial–Spiritual Perspective

A biopsychosocial–spiritual perspective recognizes the importance of whole person care and takes into account a client’s physical or medical condition; emotional or psychological state; socioeconomic, sociocultural, and sociopolitical status; and spiritual needs and concerns.

Bioethics

Bioethics is “the analysis and study of legal, moral, social, and ethical considerations involving the biological and medical sciences” (Barker, 2013, p. 41).

11

Case Management

Case management is a collaborative process to plan, seek, advocate for, and monitor services, resources, and supports on behalf of a client. Case management enables a health care social worker to serve clients who may require the services of various health care providers and facilities, community-based organizations, social services agencies, and other programs. Case management limits problems arising from fragmentation of services, staff turnover, and inadequate coordination among providers. “Care coordination,” “care management,” and “patient navigation” are sometimes used interchangeably with “case management” (Barker, 2013).

Cultural Competence

Cultural competence is “the process by which individuals and systems respond respectfully and effectively to people of all cultures, languages, classes, races, ethnic backgrounds, religions, and other diversity factors [including, but not limited to, sexual orientation; gender, gender expression, and gender identity; and family status] in a manner that recognizes, affirms, and values the worth of individuals, families, and communities and protects and preserves the dignity of each” (NASW, 2007, pp. 12–13).

Health Disparities

Health disparities are preventable differences in the incidence, prevalence, mortality, and disease burden that are closely linked with social, economic, and environmental disadvantage. Health disparities adversely affect groups of people who have systematically experienced greater obstacles to health based on their race or ethnicity; religion;

12

socioeconomic status; sexual orientation; gender, gender expression, and gender identity; age; mental health; cognitive, sensory, or physical disability; geographic location; or other characteristics historically linked to discrimination or exclusion (Centers for Disease Control and Prevention, n.d.).

Social Determinants of Health

The social determinants of health are factors that affect a wide range of health and quality- of-life outcomes and are responsible for most health disparities. These factors include income, housing, education, employment, and access to health services, among others. Social determinants of health are shaped by the distribution of money, power, and resources (Centers for Disease Control and Prevention, n.d.).

National Standards for Culturally and

Linguistically Appropriate Services in Health

Care (CLAS Standards)

The National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care (the CLAS Standards), developed by the U.S. Department of Health and Human Services (HHS), are intended to advance health equity, improve quality, and help eliminate health care disparities by providing guidance to health care organizations for implementing culturally and linguistically appropriate services (HHS, Office of Minority Health, 2013).

Patient Protection and Affordable Care Act

(ACA) (2010)

The ACA is a broad-based federal law that seeks to reform the U.S. health care delivery system by expanding health insurance

13

coverage, enhancing quality of care, improving health outcomes, regulating the health insurance industry, and reducing health care spending.

Patient-Centered Medical Home (PCMH)

The PCMH is a health care delivery model accountable for meeting the large majority of a person’s physical and mental health care needs, including primary, acute, and chronic care. Within a PCMH, an individual has an ongoing relationship with a primary care provider who directs and coordinates his or her care across all elements of the broader health care system, including physician specialty services, hospitals, home health care, and community services and supports (Agency for Healthcare Research and Quality, n.d.-a).

Integrated Care

Integrated care is a health care delivery approach in which primary care, mental health, and behavioral health care services are systematically coordinated and available in one location (Substance Abuse and Mental Health Services Administration & HHS, Health Resources and Services Administration, Center for Integrated Health Solutions, n.d.).

Chronic Care Model

The chronic care model is a widely used approach to chronic illness management that adapts the acute care delivery system to more appropriately meet the needs of individuals with chronic illness (Agency for Healthcare Research and Quality, n.d.-b).

Accountable Care Organization (ACO)

An ACO is a group of physicians, hospitals, and other health care providers who share

14

responsibility for providing coordinated care to patients. Within an ACO, providers are financially incentivized for meeting specific quality and utilization benchmarks for a defined patient population (Centers for Medicare & Medicaid Services, n.d.).

Evidence-Informed Practice

Evidence-informed practice is practice based on the best available research, practice expertise, and available resources.

Guiding Principles

The NASW Standards for Social Work Practice in Health Care Settings reflect the following guiding principles of the social work profession:

� Self-determination: Social workers respect and promote the right of clients to self- determination and assist clients in their efforts to identify and clarify their goals.

� Cultural competency and affirmation of the dignity and worth of all people: Social workers treat each person in a caring and respectful fashion. With skills in cultural awareness and cultural competence, social workers affirm the worth and dignity of people of all cultures.

� Person-in-environment framework: Social workers understand that each individual experiences a mutually influential relationship with her or his physical and social environment and cannot be understood outside of that context. This ecological perspective recognizes that systemic injustice and oppression underlie many challenges faced by clients.

15

� Strengths perspective: Rather than focus on pathology, social workers elicit, support, and build on the resilience and potential for growth and development inherent in each individual.

� Primacy of the client–social worker relationship: The therapeutic relationship between the social worker and the client is integral to helping the client achieve her or his goals.

� Social justice: At all levels, from local to global, social workers promote and advocate for social, economic, political, and cultural values and institutions that are compatible with the realization of social justice.

� Importance of social work research: Social workers promote the value of research as a means of improving the well-being of individuals, families, and society; strengthening the current workforce; and maintaining the social work profession’s role in health care settings.

16

Standards

Standard 1. Ethics and Values

Social workers practicing in health care settings shall adhere to and promote the ethics and values of the social work profession, using the NASW Code of Ethics as a guide to ethical decision making (NASW, 2015a).

Interpretation

The primary mission of the social work profession is to enhance human well-being and help meet the basic human needs, with special attention to the needs of people and communities who are vulnerable, oppressed, or living in poverty. Social workers have an ethical obligation to address the health care needs of these groups and advocate for change to ensure access to quality care.

The profession’s mission is rooted in core values that have been embraced by social workers throughout the profession’s history and highlight social work’s distinct purpose and perspective. These values—service, social justice, dignity and worth of the person, importance of human relationships, compassion, integrity and competence—constitute the foundation of social work and underlie the practice of social work in health care settings.

The NASW Code of Ethics establishes the ethical responsibilities of all social workers with respect to their own practice, clients, colleagues, employees and employing organizations, the social work profession, and society. Acceptance of these responsibilities— which include upholding a client’s right to privacy and confidentiality and promoting

17

client self-determination—fosters competent social work practice in health care settings.

In a health care system characterized by technological advancement and rapid change in care delivery and financing of health care services, ethical dilemmas among and between clients, families, health care professionals, and organizations are potentially numerous and complex. The NASW Code of Ethics and prevailing clinical bioethics provide a foundation for social workers to manage such dilemmas. Health care social workers have the responsibility to know and comply with local, state, federal, and tribal legislation, regulations, and policies, addressing topics such as guardianship; parental rights; advance directives; and reporting requirements for abuse, neglect, exploitation, suicide, and threat of harm to others.

When an ethical dilemma or conflict occurs, the health care social worker is expected to employ available mechanisms, including social work supervision, peer review, institutional ethics committees, and external consultation, to resolve the dilemma.

Standard 2. Qualifications

Social workers practicing in health care settings shall possess a baccalaureate or master’s degree in social work from a school or program accredited by the Council on Social Work Education, shall comply with the licensing and certification requirements of the state(s) or jurisdiction(s) in which she or he practices, and shall possess the skills and professional experience necessary to practice social work in health care settings.

18

Interpretation

Social work degree programs provide the fundamental education and training required for all social work practice specialties. As an area of specialization within the social work profession, health care social work requires a distinct skill set and knowledge base, as outlined in these standards. Ideally, prospective health care social workers should have prior health care–related educational or employment experience. At a minimum, it is a health care social worker’s responsibility to

� Acquire and maintain social work licensure or certification, as available, for the social worker’s educational level and professional experience

� Abide by a defined scope of practice, as required by state law or regulation

� Adhere to supervision requirements � Pursue ongoing professional development

activities, to acquire the competence necessary to perform job responsibilities.

A health care social worker whose responsibilities include the diagnosis of mental and behavioral health conditions and/or the provision of psychotherapy must have a master’s degree in social work and should either be licensed at the clinical level or, if the licensing jurisdiction allows, perform clinical tasks under supervision.

Standard 3. Knowledge

Social workers practicing in health care settings shall acquire and maintain a working knowledge of current theory and evidence- informed practice, and shall use such information to ensure the quality of social work practice.

19

Interpretation

As health care professionals, social workers require specialized knowledge and skills. This knowledge and skill base can be obtained through multiple approaches, including coursework and field practice in a social work degree program, specialty practice credentials earned after graduation, health care–related employment experience, and ongoing continuing education. Developing a knowledge and skill base is a cumulative process that requires a commitment to career-long learning.

Given the growing complexity of services delivery systems and client needs, even experienced health care social workers may encounter situations requiring knowledge and skills beyond the scope of their usual practice setting. In such situations, the health care social worker seeks supervision, consultation, and continuing professional development, as described elsewhere in these standards, to ensure she or he has both the requisite knowledge of health care delivery systems and the skills to serve clients effectively. In addition, the social worker may need to collaborate with health care and other services providers on behalf of a client, or refer a client to other social workers whose expertise is more suitable to the client’s needs and circumstances.

Knowledge and skills that are essential to social work practice in health care settings include, but are not limited to, the following areas:

Physical and mental/behavioral health

� The interplay between the physiological elements of acute, chronic, and life-limiting illness and biopsychosocial–spiritual health and well-being

20

� Concepts and theories associated with life- span development, neurobiology, and behavioral change

� Grief, loss, and bereavement � Depression, anxiety, and other mental

health conditions � Addiction and other behavioral health

conditions � Sexual health � Concerns related to sexual orientation, gender

identity and expression, and gender roles � Basic medical terminology � Knowledge of common health conditions � Counseling and behavioral change

intervention

Health care delivery system issues

� The health care continuum � The unique needs of marginalized,

oppressed, and diverse populations � Health disparities and the social

determinants of health � Evidence-informed approaches to health

care, including the PCMH, integrated primary and behavioral health care, ACOs, and the chronic care model

� New health care policies and delivery system changes resulting from the ACA

� Basics of health insurance coverage, including Medicare, Medicaid, the Children’s Health Insurance Program, and commercial insurance plans

� Health care system trends, including ongoing health care infrastructure changes

� Accreditation and regulatory standards governing health care settings

� Thorough knowledge of community resources � Micro-, mezzo-, and macro-level preventive

health care

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Roles and responsibilities of social workers in

health care settings

� Understanding of common ethical and legal issues in social work practice in health care settings

� Biopsychosocial–spiritual assessment � Use of the strengths perspective � Client and family engagement in all aspects

of social work intervention � Case management/care management/care

coordination/health care navigation � Discharge and transition planning � Client concordance with and adherence to

the plan of care � Advance care planning � Palliative care, including pain and symptom

management � Hospice and end-of-life care � Identification of child/elder/vulnerable adult

abuse, trauma, neglect, and exploitation � Crisis intervention � Facilitation of benefits and resource

acquisition to assist clients and families, including an understanding of related policies, eligibility requirements, and financial and legal issues

� Advocacy with other members of the interdisciplinary team and within the health care institution to promote clients’ and families’ decision making and quality of life

� Client, family, interdisciplinary, and community education

� Family systems issues, including the impact of health care concerns, illness, and disease on family relationships; life cycles; and caregiving roles and support needs

Research and evaluation

� Research and evaluation methodology

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� Social work outcome/practice evaluation approaches

� Opportunities for social work participation in institutional quality improvement programs and research projects

� Client and family education regarding opportunities for clinical trial participation

� Ability to analyze research results and incorporate findings into practice, organizational quality improvement initiatives, and advancement of the social work profession

Standard 4. Cultural and Linguistic Competence

Social workers practicing in health care settings shall provide and facilitate access to culturally and linguistically appropriate services, consistent with the NASW Standards and Indicators for Cultural Competence in Social Work Practice (NASW, 2015b).

Interpretation

The increasing racial, ethnic, and linguistic diversity of the United States requires health care social workers to strive continuously for cultural competence. Recognition and affirmation of cultural and linguistic diversity are critical to both therapeutic alliances with clients and cooperative working relationships with colleagues. Given the many facets of culture, every interaction between a health care social worker and a client is potentially a cross-cultural exchange, as two individuals are unlikely to be identical in every aspect of cultural identity.

The practice of health care social work requires an understanding of the broad scope of diversity in the United States. Client diversity

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is expressed in many ways, including race, ethnicity, socioeconomic class, sexual orientation; gender, gender expression, and gender identity; religion, age, health and family status; cognitive, physical, or psychiatric ability; and sensory differences, preferred language, immigration status, degree of acculturation, level of formal education, and literacy, among others. Health care social workers must also recognize that cultural self- awareness is an integral component of cultural competence. Such awareness entails understanding how one’s own cultural values, beliefs, biases, experiences, and perceptions affect interactions with clients and colleagues.

Health care social workers must acquire a cross-cultural knowledge base to provide effective, culturally competent practice. In particular, social workers must develop and maintain an understanding of the history, traditions, rituals, values, family systems, and communication patterns of major client groups served, as well as an understanding of the influence of culture on help-seeking behaviors and perceptions of health, illness, health care treatments, disability, caregiving roles, and death and dying among client/patient groups served. Social workers should also recognize how societal oppression and privilege related to cultural and linguistic diversity (such as racism, sexism, homophobia, ageism, or xenophobia) affect clients’ biopsychosocial– spiritual well-being, access to and use of supports and services, and health outcomes.

Health care social workers should advocate for organizational practices and policies that promote and support cultural diversity among

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staff and throughout the health care organization. These may include hiring and retention policies that ensure various client groups are represented among personnel and institutionwide education and training programs to develop specialized expertise (such as bilingual and bicultural skills) among staff.

There is no endpoint in the achievement of cultural competence; rather, developing and maintaining cultural competence is a lifelong process of learning and self-reflection. To develop and promote cultural competence at the individual, institutional, or societal level, social workers should be guided by the NASW Standards and Indicators for Cultural Competence in Social Work Practice (NASW, 2015b). HHS’s National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care (HHS, 2013) may also serve as a guide for social workers.

Standard 5. Screening and Assessment

Social workers practicing in health care settings shall engage clients and, when appropriate, members of client support systems, in screening and assessment, by gathering information for use in developing evidence-informed care plans.

Interpretation

Screening for psychosocial issues is now common in health care settings. Within emergency departments, clinics, and other points of entry, individuals are often screened for pain, mental health disorders, domestic violence, substance use disorders, self-harm, and distress, among other concerns. Screening can also occur throughout a disease trajectory. The presence

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of psychosocial screening programs has become a criterion for institutional accreditation in certain health care settings.

Early identification of psychosocial issues can assist health care social work staff in effectively prioritizing situations that may affect client safety or indicate a high need for social work services. Preventive screening results can also inform a comprehensive client assessment. Social workers should be trained and demonstrate competency in the use of psychosocial screening tools used within their institutions and organizations. Social workers should also participate on institutional committees that implement and monitor psychosocial screening programs.

Biopsychosocial–spiritual assessment is a fundamental process of social work practice in health care settings. The foundation of client care planning is the comprehensive assessment, which requires social workers to engage clients in identifying their needs and strengths and supporting clients in establishing priorities and goals. In conducting an assessment, the health care social worker must use empathy, client- centered interviewing skills, and methods appropriate to clients’ capacity. In the assessment process, social workers may find standardized instruments helpful in identifying and responding to client concerns. Such instruments are viewed as starting points in the development and refinement of an individualized, comprehensive assessment.

Assessment is an ongoing activity, not a onetime event. During the reassessment process, the social worker and client (and, if

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appropriate, members of the client support system) revisit the needs, assets, and priorities identified in the initial assessment and discuss the client’s emerging concerns.

A comprehensive assessment may include the following: � Behavioral and mental health status, including

current level of functioning, coping style, crisis management skills, substance use history, and risk of suicide or homicide

� Physical and cognitive functioning � Psychosocial–spiritual well-being, including

ability to fulfill social roles � Cultural values, beliefs, and practices � Client strengths, protective factors, and

points of resilience � Employment, educational, or vocational

history, including challenges, goals, and objectives

� Living arrangements, including suitability and safety of the home environment

� Family composition, structure, and roles � Language preferences and proficiency levels � Degrees of literacy, including health,

behavioral health, and financial literacy � Risk of abuse, neglect, or exploitation of or

by the client, and underlying causes for such mistreatment

� Social supports, including formal and informal support systems

� Need for economic or other psychosocial resources, supports, and services

� Ability to navigate relevant service systems (such as educational, employment, health care, housing, legal, nutritional, social services, or transportation systems)

� Life-span planning (which may include advance care planning, anticipation of

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caregiving responsibilities, permanency planning for minor children, retirement planning, or other domains)

� Client’s perceptions of changes needed to improve her or his situation

� Identification of barriers to adherence to the plan of care.

Assessment processes should, to the extent possible, be customized for vulnerable populations, including children, people with severe and persistent mental illness, immigrants and refugees, people with substance use disorders, survivors of violence or trauma, people who are homeless, and people with physical or cognitive disabilities.

Standard 6. Care Planning and Intervention

Social workers practicing in health care settings shall develop and implement evidence-informed care plans that promote client well-being and ensure a client- and family-centered continuum of care.

Interpretation

Care plans outline the necessary steps— identified collaboratively by the social worker, the client, the client support system (at the competent client’s discretion), and other members of the health care team—to achieve the goals and objectives identified in a comprehensive biopsychosocial–spiritual assessment. Implementing care plans with individuals across the life span, and with different health conditions and cultures, requires health care social workers to tailor practice techniques to best meet client needs.

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Case management—a historical function of the social work profession—remains an efficient and cost-effective approach to care plan implementation that can optimize client functioning. Health care institutions have multiple titles for social workers who engage in case management functions. “Case manager,” “care manager,” “care transition manager,” “discharge planner,” “patient navigator,” and “care coordinator” describe work that resembles, to varying degrees, case management. Through case management, health care social workers engage clients in the collaborative process of identifying, planning, accessing, coordinating, monitoring, evaluating, and advocating for resources, supports, and services.

Clinical social workers who are employed or contracted to provide mental or behavioral health services should use evidence-informed treatment interventions with clients. These interventions may include cognitive–behavioral therapy, motivational interviewing, chronic disease self-management, psychoeducational services, brief intervention/brief therapy, and trauma-informed care, among other modalities.

When implementing care plans, social workers should strive to � Develop and maintain a therapeutic

relationship with the client and the client support system

� Engage the client in a culturally responsive manner and with a strengths-based approach that facilitates, supports, and recognizes the client’s capabilities, resources, and resiliency

� Apply evidence-informed practice models to facilitate the client’s accomplishment of goals and objectives

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� Facilitate access to a range of financial, housing, health, mental and behavioral health, education, and community resources

� Ensure care continuity through safe discharge, appropriate transition between different levels of care, and client follow-up

� Seek consultation from health care team members and social work supervisors, as necessary, to facilitate plan implementation

� Safeguard the privacy and confidentiality of client information.

Standard 7. Advocacy

Social workers practicing in health care settings shall advocate for the needs and interests of clients and client support systems and promote system-level change to improve outcomes, access to care, and delivery of services, particularly for marginalized, medically complex, or disadvantaged populations.

Interpretation

Social workers have a responsibility to advocate for the needs and interests of clients and client support systems. Social workers in health care settings serve as client advocates by promoting client access to health care, identifying and removing barriers to services delivery, and helping clients navigate between and among complex health and social services systems. Social workers also strive to promote clients’ self-advocacy skills and to enhance the capacity of communities to support clients’ biopsychosocial–spiritual quality of life.

To strengthen services and enhance client outcomes, social workers should promote and participate in quality improvement initiatives

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within their health care institutions. Quality improvement programs offer an opportunity for health social workers to advocate for the expansion of the profession’s role in health care settings. These programs can also build social work capacity for institutional leadership roles.

Social workers should play an active role in community education efforts, speaking on behalf of their health care institutions about disease prevention, health promotion, access to care, and other timely health-related topics.

Health social workers must understand the concept of health disparities—the disproportionate burden of preventable disease, death, and disability experienced by many minority communities, people living in poverty, and other disenfranchised groups. Health disparities are closely linked with the social determinants of health, that is, the social, economic, and environmental conditions that strongly influence heath status. Population health requires minimizing health disparities and promoting health equity among all socioeconomic groups. Social workers have an ethical obligation to address health disparities by educating colleagues, the media, allied professionals, decision makers and policymakers, and other stakeholders on the impact of health disparities and unequal access to health services and by engaging in social and political action to reduce health disparities.

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Standard 8. Interdisciplinary and

Interorganizational Collaboration

Social workers practicing in health care settings shall promote collaboration among health care team members, other colleagues, and organizations to support, enhance, and deliver effective services to clients and client support systems.

Interpretation

Collaboration between the social worker and the client is the foundation of health care social work practice. Therefore, the client (and when appropriate members of the client support system) is at the center of the health care team. Within health care settings, multiple practitioners are often involved in a client’s care, making teamwork and collaboration essential. Teamwork and good communication among health care practitioners can improve health care delivery, resulting in better client outcomes.

Social workers should be competent in different teamwork models that are common in health care settings, including multidisciplinary models (different disciplines working together, each drawing on their own knowledge); interdisciplinary models (different disciplines working in a coordinated fashion toward a common goal for the client); and transdisciplinary models (a team of health care professionals cooperating across disciplines to improve patient care through practice or research). Working effectively as members of a health care team also requires health care professionals, including social workers, to engage in interdisciplinary education programs. These efforts allow team members to learn about each other’s contributions to improving client outcomes.

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The health care social worker plays an integral role in fostering, maintaining, and strengthening collaborative partnerships on behalf of clients, families, and communities and should demonstrate the ability to � Articulate and fulfill the mission and functions

of the employing health care organization � Differentiate social work perspectives,

values, and interventions from those of other health care disciplines

� Ensure that the social work roles and responsibilities are clearly delineated and communicated to other members of the team

� Provide psychosocial insight, guidance, and recommendations to other members of the health care team regarding client and family well-being

� Describe the roles of other health care practitioners and organizations involved in supporting the client

� Ensure that the roles and responsibilities of each collaborating organization are clearly delineated and communicated

� Communicate effectively with all professionals, paraprofessionals, and volunteers involved in supporting social work clientele in the health care setting

� Advocate for the client’s or, when appropriate, the client support system’s integral role in team communications and care planning, delivery, and monitoring

� Communicate the client’s information in a respectful and objective manner while protecting the client’s confidentiality and privacy

� Foster an organizational culture that promotes effective, coordinated services for clients, families, and communities

� Develop and maintain partnerships across

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disciplines and organizations to enhance access to and continuity of care for social work clientele

� Share and, where appropriate, team leadership in planning and improving services to clients.

Standard 9. Practice Evaluation and Quality

Improvement

Social workers practicing in health care settings shall participate in ongoing formal evaluation of their practice to advance client health and well-being, assess the appropriateness and effectiveness of services and supports, ensure competence, and strengthen practice.

Interpretation

Evaluation of social work practice is an essential component of social work services delivery. Evaluation entails soliciting and integrating internal and external feedback on the process and outcomes of social work practice in health care settings. Ongoing formal practice evaluation is vital to ensure that services provided to clients are appropriate, effective, and timely in helping clients achieve their goals. Moreover, practice evaluation outcomes are increasingly used for position justification, performance review, practice standards, goal setting, risk management, utilization review, and research efforts. Social work evaluation methods may include peer review, self-evaluation, supervision, and other research methods.

Evaluation practices may include the following activities: � Application of appropriate tools such as

clinical indicators, practice guidelines, satisfaction surveys, and standardized

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performance assessments to evaluate client progress and satisfaction

� Solicitation and incorporation of feedback from clients regarding the extent to which social work services have helped them identify and achieve their goals

� Solicitation and incorporation of feedback from the interdisciplinary treatment team regarding the effectiveness of social work services and opportunities for increased or improved interdisciplinary collaboration

� Measurement of both process and outcome objectives

� Practitioner, program, and organizational self-evaluation

� Participation in qualitative and quantitative social work research to strengthen the evidence base for social work services in health care settings

� Dissemination of evaluative data to clients, payers, and other health care providers on request, and with consideration for clients’ rights to privacy and confidentiality

� Use of internal and external practice, program, or organizational evaluators

� Application of evaluation and research findings, including evidence-informed practice, to facilitate client goal setting and to enhance practice and program quality and outcomes

� Use of peer review, supervision, and consultation with other social workers and across disciplines.

Standard 10. Record Keeping and Confidentiality

Social workers practicing in health care settings shall maintain timely documentation that includes pertinent information regarding client assessment, and intervention, and outcomes,

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and shall safeguard the privacy and confidentiality of client information.

Interpretation

Clear, concise, and ongoing documentation of social work services in health care settings facilitates effective communication with other health care providers and organizations, thereby promoting continuity of services. Documentation serves as a foundation for care planning and for practice and program evaluation. In addition, professional documentation is often required for services reimbursement, utilization or legal review, and demonstration of organizational accountability to payers or funding sources. The purpose of documentation is to foster strong working relationships with, and services for, clients in health care settings.

Documentation of social work services should be recorded on paper or electronically and must be prepared, secured, and disclosed in accordance with regulatory, legislative, statutory, and organizational requirements.

High-quality social work documentation includes � The client’s identifying information � Screening results � Initial and subsequent biopsychosocial–

spiritual assessments � A client care plan, with procedures for

monitoring and quantifying progress toward accomplishment of client goals, services provided, and other information about plan implementation

� Referrals to or from other practitioners, organizations, or resources, including rationale for referrals, and other

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collaboration on behalf of the client � Dates, times, and descriptions of contact with

the client, the client’s support system, and other health care providers or organizations

� Quantifiable service outcomes � Supervision or consultation sought or

provided to enhance social work services � Transfer or termination of services � When indicated, written permission from

the client to release and obtain information � Documentation of compliance with

confidentiality and privacy rights and responsibilities

� Accounting of receipts and disbursements related to client services provision.

Health care social workers must safeguard all client information and adhere strictly to local, state, federal, and tribal requirements regarding confidentiality. They should inform clients both verbally and in writing of confidentiality requirements and limitations before services are initiated. This is necessary to ensure that the client has the information needed to provide informed consent and to facilitate the client’s understanding of how the social worker discloses client information to other health care professionals and how the health care organization responds to external requests for confidential information.

Technology, including e-mail, text messaging, videoconferences, and other mechanisms, may increase the efficiency of social work services, but must always be used in a professionally appropriate manner that ensures client confidentiality in all venues. Disclosure of identifying information should be avoided whenever possible. In particular, social

37

workers should refrain from disclosure of client information on social media.

Health care social workers should be knowledgeable about the confidentiality implications of electronic record keeping specific to health care settings. Social workers should receive training on and demonstrate competence in the health care organization’s electronic medical record (EMR) system and should demonstrate competency in its use, including an understanding of the EMR’s unique confidentiality and privacy implications. Health care social workers should also be knowledgeable about the Health Insurance Portability and Accountability Act of 1996, and the Health Information Technology for Economic and Clinical Health Act (2009).

Standard 11. Workload Sustainability

Social workers practicing in health care settings shall responsibly advocate for workloads and scope of work that permit efficient and high- quality social work services delivery.

Interpretation

Health care organizations, social work managers, and social work staff have joint responsibility for establishing and maintaining a workload that allows for adequate and appropriate interventions and monitoring of services and outcomes. A workload consists of any social work function, including direct contact with or on behalf of clients and administrative, policy, research, or educational functions performed in accordance with a health care social work position. The workload reflects the needs and goals of the clientele and the health care organization and may include social work coverage outside of regular office hours.

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A caseload, in contrast, refers to the number of clients served at a given point in time. Client caseload size directly affects a social worker’s capacity to establish relationships with and provide services to clients. Consequently, caseload size should allow for meaningful opportunities for client contact. The number of clients a health care social worker can serve effectively is limited by the degree to which health care organizations serve clients in acute, high-risk situations or other circumstances requiring intensive, frequent contact with clients. The workload also reflects the demands of the population served.

Multiple factors affect both caseload size and workload manageability within health care settings, including but not limited to � Complexity of client needs, including

patient acuity and requirements for care transitions and follow-up services

� Availability of institutional, community, and family resources to meet client needs and goals

� Number of clients the health care organization serves

� Administrative support and access to technology.

For maximum effectiveness, the size of the social work staff reflects the mission of the health care organization, the scope of the social work program, and the number and complexity of clients served. On behalf of health care social workers and their clientele, social workers should advocate for and support research to determine reasonable caseloads with diverse populations and within different health care practice settings, to provide ethical, quality-based services.

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Standard 12. Professional Development

Social workers practicing in health care settings shall assume personal responsibility for their own continued professional development, in accordance with the NASW Standards for Continuing Professional Education (NASW, 2003) and the licensure or certification requirements of the state(s) or jurisdiction(s) in which she or he practices.

Interpretation

Social workers must engage in ongoing professional development to maintain competence within their fields of practice. Professional development activities relevant to social work practice in health care settings may include developments in clinical care, research or technology, health care policy and legislation, community resources and services, ethics, and leadership and administration, among other topics. Numerous opportunities for professional development exist within NASW, allied professional organizations, schools of social work, health care institutions, and organizations providing services to or on behalf of various constituencies (such as children, older adults, or people with disabilities) at the local, state, national, and international levels.

Employing organizations should encourage and support social workers’ participation in professional development activities. This can be accomplished through organizational sponsorship of multidisciplinary and social work–specific continuing education programming; promotion of supervision and mentorship opportunities for social workers; and support for social work involvement in peer review, research, publication, and volunteer activities. To

40

advance the field, social workers must take an active role in opportunities, both within their employing institutions and within the larger social work community.

Standard 13. Supervision and Leadership

Social workers practicing in health care settings shall strive for leadership roles in educational, supervisory, administrative, and research efforts within their institutions and shall mentor others within the social work profession, to develop and maintain a robust health care social work workforce.

Interpretation

The purpose of social work supervision in health care settings is to enhance the professional skills and knowledge of a supervisee to increase her or his competence in providing quality services to clients and families. Supervision facilitates professional growth and development and improves clinical outcomes.

Best practice dictates that within health care settings, social work departments be directed by a master’s-level social worker with experience and expertise in health care practice. A licensed clinical social worker—be it the supervisor or another individual—should be available to provide clinical supervision for licensure, in accordance with state licensing laws. Qualifications for social work supervisors should be consistent with the Best Practice Standards in Social Work Supervision (NASW & Association of Social Work Boards, 2013).

Supervisors play a key role in the professional development of their supervisees. The actions and advice of the supervisor are keenly

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observed by supervisees and, consequently, influence much of the supervisees’ thinking and behavior. Teaching is an important function of the supervisor, who models the behavior the supervisees will emulate. Supervisors should create a supportive educational environment in which supervisees learn about the health care systems in which they work and the clients and communities they serve.

To sustain and nurture the practice of health care social work, all experienced social workers, regardless of their supervisory status, should offer guidance, mentoring, and consultation to students, interns, and their less experienced peers. Social workers in senior management roles should provide mentorship to other social workers aspiring to leadership positions within health care settings.

In addition, social workers should play an active role in all types of clinical research, as well as in health services and quality improvement research. Such involvement not only demonstrates the leadership capability of the social work profession, but also advances recognition among interdisciplinary colleagues of the essential role of biopsychosocial–spiritual intervention in quality care to clients and families.

In addition, social workers should play an active role in clinical, health services, and quality improvement research, to demonstrate the leadership capability of the social work profession and to advance recognition among colleagues in other disciplines of the essential role of biopsychosocial-spiritual intervention in quality services to clients and families.

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Experienced social workers should promote relationships with schools of social work in their states and communities to encourage interest in health care practice through field placement arrangements, joint research initiatives, and collaborative continuing education activities.

Social workers should initiate and participate in qualitative and quantitative social work research to strengthen the evidence base for social work services in health care settings and improve the broader health care system.

References

Agency for Healthcare Research and Quality. (n.d.-a). Patient-centered medical home resource center. Retrieved from http://pcmh.ahrq.gov/

Agency for Healthcare Research and Quality. (n.d.-b). Toolkit for implementing the chronic care model in an academic environment. Retrieved from www.ahrq.gov/professionals/education/ curriculum-tools/chronic caremodel/ chronic3a.html

Barker, R. L. (2013). The social work dictionary (6th ed.). Washington, DC: NASW Press.

Centers for Disease Control and Prevention. (n.d.). Social determinants of health. Retrieved from www.cdc.gov/socialdeterminants/ Definitions.html

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Centers for Medicare & Medicaid Services. (n.d.). Accountable care organizations (ACO). Retrieved from www.cms.gov/Medicare/ Medicare-Fee-for-Service-Payment/ACO/

Health Information Technology for Economic and Clinical Health Act, P.L. 111-5, div. A, title XIII, div. B, title IV, 123 Stat. 226, 467 (42 U.S.C. 300jj et seq.; 17901 et seq.) (February 17, 2009).

Health Insurance Portability and Accountability Act of 1996, P.L. 104-191, 110 Stat. 1936 (August 21, 1996).

Institute for Healthcare Improvement. (2014). The IHI Triple Aim initiative. Retrieved from www.ihi.org/Engage/Initiatives/TripleAim/ Pages/default.aspx

National Association of Social Workers. (2003). NASW standards for continuing professional education. Washington, DC: Author.

National Association of Social Workers. (2015a). Code of ethics of the National Association of Social Workers. Washington, DC: Author.

National Association of Social Workers. (2015b). Standards and indicators for cultural competence in social work practice. Washington, DC: Author.

National Association of Social Workers & Association of Social Work Boards. (2013). Best practice standards in social work supervision. Washington, DC: NASW Press.

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Patient Protection and Affordable Care Act, P.L. 111-148, 124 Stat. 1025 (2010).

Substance Abuse and Mental Health Services Administration & U.S. Department of Health and Human Services, Health Resources and Services Administration, Center for Integrated Health Solutions. (n.d.). What is integrated care. Retrieved from www.integration.samhsa.gov/about-us/ what-is-integrated-care

U.S. Census Bureau. (2014). Health insurance coverage in the United States: 2013 (Current Population Reports, P60-240). Washington, DC: U.S. Government Printing Office.

U.S. Department of Health and Human Services. (2013). Report of the Secretary’s Advisory Committee on national health promotion and disease prevention objectives for 2020. Retrieved from www.healthypeople.gov

U.S. Department of Health and Human Services, Office of Minority Health. (2013). The national culturally and linguistically appropriate services standards. Retrieved from www.thinkculturalhealth.hhs.gov/pdfs/ NationalCLASStandards FactSheet.pdf

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Acknowledgments

NASW gratefully acknowledges the work of the social work expert panelists for their contributions to the NASW Standards for Social Work Practice in Health Care Settings. NASW also thanks its health care specialty credential holders, Specialty Practice Section committees and members, and other members for their input in the standards development process.

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OF SOCIAL WORKERS

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Journal of Psychosocial Oncology

ISSN: 0734-7332 (Print) 1540-7586 (Online) Journal homepage: https://www.tandfonline.com/loi/wjpo20

“You’re too young for this”: Adolescent and Young Adults’ Perspectives on Cancer Survivorship

Erin E. Kent PhD , Carla Parry PhD , Michael J. Montoya PhD , Leonard S. Sender MD , Rebecca A. Morris MSG, MPH & Hoda Anton-Culver PhD

To cite this article: Erin E. Kent PhD , Carla Parry PhD , Michael J. Montoya PhD , Leonard S. Sender MD , Rebecca A. Morris MSG, MPH & Hoda Anton-Culver PhD (2012) “You’re too young for this”: Adolescent and Young Adults’ Perspectives on Cancer Survivorship, Journal of Psychosocial Oncology, 30:2, 260-279, DOI: 10.1080/07347332.2011.644396

To link to this article: https://doi.org/10.1080/07347332.2011.644396

Accepted author version posted online: 14 Dec 2011. Published online: 14 Mar 2012.

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Journal of Psychosocial Oncology, 30:260–279, 2012 Copyright © Taylor & Francis Group, LLC ISSN: 0734-7332 print / 1540-7586 online DOI: 10.1080/07347332.2011.644396

“You’re too young for this”: Adolescent and Young Adults’ Perspectives

on Cancer Survivorship

ERIN E. KENT, PhD Cancer Prevention Fellowship Program and Office of Cancer Survivorship, National Cancer

Institute, National Institutes of Health, Rockville, MD, and Department of Epidemiology, University of California–Irvine, Irvine, CA, USA

CARLA PARRY, PhD Office of Cancer Survivorship, National Cancer Institute, National Institutes of Health,

Rockville, MD, USA

MICHAEL J. MONTOYA, PhD Department of Anthropology, Department of Chicano/Latino Studies, and Department of

Population Health and Prevention, University of California–Irvine, Irvine, CA, USA

LEONARD S. SENDER, MD Chao Family Comprehensive Cancer Center, University of California–Irvine, Irvine, CA,

and CHOC Children’s Hospital of Orange County, Orange, CA, USA

REBECCA A. MORRIS, MSG, MPH CHOC Children’s Hospital of Orange County, Orange, CA, USA

HODA ANTON-CULVER, PhD Department of Epidemiology and Genetic Epidemiology Research Institute,

University of California–Irvine, Irvine, CA, USA

Adolescent and young adult cancer survivors face unique chal- lenges not systematically addressed by cancer clinicians. Four fo- cus groups and two individual interviews were conducted with 19 survivors to profile experiences and identify key concerns for future interventions. The resultant themes reflect cancer care continuum

The authors would like to acknowledge Janet Alexanian and Rachel Dioso-Villa for suggestions that greatly improved the manuscript. Work was carried out at the University of California, Irvine. Support for this work was provided by a University of California Institute for Mexico and the United States dissertation grant and a Centers for Disease Control and Prevention R36 Public Health Dissertation Grant (R36DP002012-01) to Erin E. Kent.

Address correspondence to Erin E. Kent, PhD, Cancer Prevention Fellowship, National Cancer Institute, 6116 Executive Blvd, Suite 404, Rockville, MD 20852. E-mail: erin.kent@ nih.gov

260

Young Adult Cancer Survivor Perspectives 261

challenges (such as delays in diagnosis, problems with adherence), psychosocial concerns (such as infertility and reproductive con- cerns, changing social relationships, financial burden), and the paradox of being diagnosed with cancer as a young adult. Future intervention development for adolescent and young adult survivors should involve patient voices at each stage of the research process.

KEYWORDS adolescent and young adult, qualitative research, focus groups, cancer survivorship

INTRODUCTION

Adolescents and young adult (AYA) cancer survivors have been a historically understudied research population. Work conducted by the National Cancer Institute (NCI) and LiveSTRONG has countered this trend by highlighting the experiences of individuals diagnosed with cancer between ages 15 and 39 (Adolescent and Young Adult Oncology Progress Review Group, 2006), a diverse range of life stages for whom illness can affect and disrupt de- velopmental milestones. Likewise, cancer advocacy organizations continue to push for increased recognition and responsiveness to AYA-specific needs (Bleyer, 2007). Adolescent and young adult survivors face challenges similar to those of older and younger survivors, including late effects of cancer and treatments, anxiety about recurrence, and an increased psychosocial needs burden as well as difficulties in accessing psychosocial services (Insitute of Medicine, 2006). However, AYAs also have unique survivorship experiences: shifts in educational and occupational trajectories, often at critical junctures; effects on dating, sexuality, and romantic partnerships that can have a last- ing impact; possible damage to fertility; and constraints on social support networks (Adolescent and Young Adult Oncology Progress Review Group, 2006; Hall et al., 2011). Feelings of uncertainty that accompany recovery, along with the recognition of the frailty of life, may influence survivors in how they manage their lives after cancer (Zebrack & Zeltzer, 2001). The impact of having to face this uncertainty for a long time and over several transitional life stages on AYAs, however, is not well understood.

Adolescent and young adult survivors are an understudied population, and little is known about their unique psychosocial needs. Using qualitative methods to illuminate survivor viewpoints in research legitimizes a role for local knowledge from survivors alongside that of health researchers and clin- icians and allows a forum for a truly patient-centered understanding of AYA needs. Surveys alone cannot accomplish this simply because they predeter- mine which issues are likely to be relevant and include only these issues (Muntaner & Gomez, 2003). By providing a space to listen to AYA survivors, and in particular to the interactions among them, researchers can gain insight

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into the mechanisms of AYAs’ experiences and the directions that future in- vestigations should take (Morgan, 1997). This study sought to profile the experiences of a selection of young adults living with cancer to better un- derstand the issues that are most salient to these cancer survivors. Although existing research has accomplished the task of identifying and quantifying the needs of the AYA survivorship population (Kazak et al., 2010; Zebrack, Hamilton, & Smith, 2009; Zebrack, Yi, Petersen, & Ganz, 2008), this article uses qualitative methods to explore AYAs’ priorities, and perspectives on the ways their unique situations affect psychosocial adjustment and interac- tions with the health care system. As such, this article deepens the extant knowledge base regarding the processes and factors distinguishing the AYA experience, and in doing so, provides conceptual and concrete guidance for health services delivery in this population.

METHOD

Focus group methodology was selected to elicit diverse perspectives through the process of engaging individuals who have shared a common interest (Morgan, 1997). In contrast with individual interviews, focus groups allow the facilitation of dialogue between multiple survivors, which provides an opportunity for participants to recognize the commonalities of their experi- ences and potentially feel more comfortable sharing commonalities. Focus groups also make it possible for participants to directly address other par- ticipants, and to drive the discussion, rather than just responding to and directing responses to the facilitator (Kieffer et al., 2005). We conducted four focus groups with young adult cancer survivors and conducted two individ- ual interviews with AYAs who could not join the groups due to scheduling constraints. The individual interview data were ultimately included with the group data in analyses as the emergent themes were complementary. Each of the focus groups consisted of three to six members, totaling 17 survivors. In addition, two survivors were interviewed individually, creating a total sample size of 19. Participants were between ages 16 and 40 at diagnosis, an age range that encompasses the NCI/LiveSTRONG AYA designation (15–39). One half of the participants were female. The majority of participants were non-Hispanic White (n = 15) but also included three Hispanic/Latino par- ticipants and one Asian American. All participants had been diagnosed with cancer between 6 months and 6 years ago.

The objective of the study was to inform researchers and practitioners about patterns of shared experience in AYA survivors from time of diagnosis onward. Purposive sampling by age at diagnosis, cancer type, and gender was used to create diverse groups of young adult survivors (Bernard, 2002). Participants were recruited from the local Orange County, California, chapter of an AYA survivor network (I’m Too Young for This) as well as from patient

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TABLE 1 Participant Information

Participant Age Range Age Range Tumor Treatment Alias at Diagnosisa at Interviewa Gender Type Phase

Adam 27–29 27–29 M NHL on treatment Amy 15–19 20–23 F Hodgkin’s survivorship Carly 24–26 27–29 F melanoma survivorship Chloe 24–26 27–29 F NHL survivorship Chris 20–23 24–26 M Wilm’s tumor survivorship Dan 27–29 30–33 M brain tumor survivorship Donald 24–26 30–33 M testicular survivorship Elaine 15–19 15–19 F ALL on treatment Evelyn 27–29 34–36 F Ewing’s sarcoma on treatment Hannah 24–26 30–33 F AML survivorship James 20–23 24–26 M NHL survivorship Jason 30–33 34–36 M Hodgkin’s survivorship John 20–23 24–26 M aplastic anemia survivorship Maggie 27–29 30–33 F ovarian survivorship Matt 34–36 37–39 M multiple myeloma survivorship Olivia 20–23 30–33 F NHL survivorship Rich 30–33 34–36 M brain tumor survivorship Taryn 34–36 34–36 F ovarian survivorship Tim 15–19 20–23 M ALL Survivorship

ALL = acute lymphoblastic leukemia; AML = acute myeloid leukemia; NHL = non-Hodgkin’s lymphoma. aSpecific ages were restricted to protect participants’ confidentiality.

records from the young adult cancer clinic at the University of California Irvine Medical Center. Depending on available contact information, potential participants were sent an e-mail, a letter, or telephoned about the study up to a total of 3 times. One individual and two of the groups were held in a college campus conference room, one group was conducted at a young adult cancer conference, and the remaining group met in the conference room of a local hospital where many of the participants had received treatment. One additional interview was held at a participant’s home, and the other at the campus conference room. Table 1 provides demographic information about the study participants.

The format of all interviews was semistructured, framed around the fol- lowing question: “What do scientists, doctors, and the general public not understand about adolescent and young adult cancer experiences?” Focus group methodology was employed to encourage interaction among partici- pants. Probes were kept to a minimum and used primarily for clarification, as the emphasis was on letting each focus group shape the discussion that un- folded from the initial question. Each group lasted approximately 90 minutes and included either lunch or dinner. Informed consent was granted verbally, and the discussions were audio-recorded and transcribed.1 The groups were facilitated by the primary author (and in one group, by the third author), and field notes were taken by three research assistants.

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Text from the transcripts was categorized according to theorized and emergent themes (Glaser & Strauss, 1967). A form of narrative analysis, hermeneutic phenomenology, was used to identify and code themes based on the frequency with which they appeared in the texts, and more important, the level of importance the speakers placed on those themes. Hermeneutic phenomenology is an interpretive method that relies on the following ele- ments: thick description of the encounters to be analyzed, critical reflection of the components and subcomponents of the text (words, then phrases, then passages) that relates each piece back to the whole, and a grounding of the phenomena under investigation within the context of the participants (Cohen, Kahn, & Steeves, 2000; Diekelmann & Ironside, 1998). The process of applying hermeneutic circles (a process of reading and rereading a text with careful attention each time to different portions of the text and how they relate) led to the identification of thematic universes2 for further analy- sis (Freire, 2000). A grounded theory approach guided coding of analytical categories that emerged from the transcripts (Glaser & Strauss, 1967). Specif- ically, transcribed interview text was read and reread multiple times by the authors to understand the content of the interviews and to identify common themes. Initial emergent themes were identified and discussed according to the emphasis placed on these topics by study participants and by their re- currence within and across texts. Each participant’s experiences were then reanalyzed within each thematic category to explore patterns of experience within a category. This approach led to the generation of the themes and subthemes reported in this article.

Data analysis was conducted and coding decisions were made by the two coauthors who facilitated the interviews. The rigor of the interpreta- tions was further extended by ongoing discussion and feedback on findings from study team members, two of whom are affiliated with the survivorship advocacy community, and one of whom possesses substantial experience working in clinical practice with AYAs.

RESULTS

The adolescent and young adult participants discussed many of the issues that were salient to their cancer experiences. Most of the content of their discussions fell within the following thematic areas related to survivorship: (1) cancer care continuum challenges, (2) psychosocial concerns, and (3) the AYA paradox, a metatheme (or pattern) that emerged from the analytic process. Branching across the other two themes, this theme describes how the AYA experience is unique because of the disjuncture between the de- velopmental expectations and experiences of young adults and the ways in which the cancer experience has been implicitly defined or understood

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TABLE 2 Thematic Categories and Subcategories of Hermeneutic Analysis

1. Challenges in the cancer care continuum Delays in diagnosis Problems with adherence

2. Psychosocial concerns Changing social relationships Financial burden

3. The AYA paradox Having cancer as an AYA

AYA = adolescent and young adult.

in terms of middle and later adulthood. Table 2 shows the categories and subcategories identified in analysis.

Challenges in the Cancer Care Continuum

The first theme represents participants’ accounts of diagnosis, treatment, and follow-up care. Doctors, nurses, and other providers were praised for the quality of their care and compassion. At the same time, many survivors highlighted challenges communicating with their health care providers in two aspects of care in particular: in receiving timely diagnoses and navigating care processes.

Delays in diagnosis. Diagnostic delays have been cited as a major chal- lenge facing AYA cancer patients (Martin et al., 2007) and were reflected in several participant comments. These comments illustrate a lack of awareness of potential signs and symptoms of cancer in AYAs on the part of patients and providers. One participant discussed not noticing changes in his health state:

I didn’t have [any symptoms]. That’s the scary part to me. That I didn’t feel anything. I almost hope that my experience helps the people . . . at least the people who were around me at the time, so if they see a little bump somewhere, they’ll take initiative and, like, go [seek medical attention]. (James, diagnosed with non-Hodgkin’s Lymphoma [NHL] in his early twenties)

Interactions with providers also seem to reflect incredulity at the possibility that a young adult could have cancer. This lack of awareness ultimately led to one survivor being diagnosed at a later stage:

Well, first of all, . . . the doctors . . . found a tumor on my ovary. And I said, ‘Could it be cancer?’ He said, ‘No, you’re too young for this.’ (Maggie, diagnosed with ovarian cancer in her late twenties)

Failing to recognize early signs and symptoms of cancer can con- tribute to later stage at diagnosis and poorer prognosis. Once diagnosed,

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participants continued to face challenges relating to their care, including difficulties communicating with clinicians.

Problems with adherence. Some participants related the challenges of understanding and adhering to complicated treatment regimens. One partic- ipant reported problems with medication adherence that included taking a higher dosage of steroids than intended. This individual referred to himself as an “idiot” for not knowing how to read the medication and warned:

Doctors, they shouldn’t underestimate how stupid you can be about misreading the pill bottles and things. (Matt, diagnosed with multiple myeloma in his midthirties)

Misreading and misunderstanding medication instructions is a common phenomenon that has little to do with intelligence (Nielsen-Bohlman, Panzer, & Kindig, 2004), yet at least two participants blamed themselves for these errors. Health care providers may be less likely to assume AYAs would be prone to medication errors, but anyone, regardless of age, who is ill or lacks experience with health care system could make such errors. Another participant underscored this point:

I wasn’t really well enough to pay attention to my medication and stuff. I had to do it all myself, but I didn’t know about medicine and the doctors didn’t really tell me enough details. And so, sometimes, I’d mess up with my medicine. One time, I was supposed to take these pills. And I took too many on accident. It was, like, sixteen pills on Monday. Once every two weeks. But I got it confused with sixteen pills every day. (Tim, diagnosed with acute lymphoblastic leukemia [ALL] in his midteens)

These comments illustrate the confusion that survivors can face in trying to comprehend and apply complicated medical instructions. They also support possible mechanisms driving lapses in adherence. Although AYA patients are often portrayed as noncompliant (Gesundheit, Greenberg, Or, & Koren, 2007), a portion of noncompliance may be involuntary, due to problems in provider communication and health literacy that are not limited to older adults, not to mention the stress of being ill that may further compromise capacity to fully comprehend and follow self-care instructions.

Problems relayed by participants with respect to communication and care coordination were consistent with problems already examined in the extant literature. These challenges included the depersonalization of care, a lack of empathy regarding the impact of diagnosis on one’s life, and the lack of communication about late and long-term effects. Although not unique to this age population, it is important to note that AYAs experience these challenges too.

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Psychosocial Concerns

Like older cancer survivors, AYAs face a wide array of psychosocial con- cerns as they transition into survivorship, including psychological and phys- ical health effects, changing social relationships, and financial consequences of their cancer. In terms of psychological health, one difficult aspect of AYA survivorship reported by study participants was ongoing anxiety about re- currence. Survivors discussed anxiety related to surveillance and follow-up visits; one participant dubbed the associated emotional state “scanxiety.” Given that population improvements in survival are accompanied by higher risk for recurrence, AYA survivors may have to negotiate this uncertainty and the accompanying anxiety for years. Among the concerns raised were issues of infertility and having children.

Infertility and reproductive concerns. Although infertility was not a topic that was explicitly probed, it emerged in the interviews as an important issue. For those who discussed fertility concerns, many expressed remorse about the possibility of being unable to have children. One woman’s quote reveals the impact of discovering her infertility concurrently with her cancer diagnosis:

So that was, like, a double diagnosis right there: infertility and cancer on the same day. (Maggie)

Her designation of “infertility” and “cancer” as diagnoses reveals how she placed equal importance on both pieces of news. Another participant was told her chance of having children was limited and described how this information contributed to lingering stress. Despite her odds, this survivor became a mother of two after recovery.

Although most of the participants who discussed challenges regarding fertility were female, one male participant mentioned fears that he and his wife shared about being unable to have children. The rest of the male participants did not raise this issue. It is unclear whether infertility was not a concern for these participants, whether they had not thought about their own fertility, or whether they did not feel comfortable discussing these concerns. Survivors’ primary psychosocial concerns were related to changing social relationships and financial concerns related to survivorship.

Changing social relationships. Participants in the study reported that social support allowed them time to recuperate from their illness and treat- ment; likewise a lack of social support created stress and hindered healing. The benefits of having a partner, family member, or other trusted persons to aid with financial responsibilities, child care, transportation, and emo- tional support were directly tied to survivors’ quality of life and outlook on cancer itself. Nearly all participants emphasized the importance of having social support from a wide variety of sources, including caregivers and other

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survivors in their broader communities. Some addressed feelings of being overprotected by their families. Others related stories of losing friendships or relationships as a result of their cancer experience. Although feelings of abandonment seem to be contradictory with feelings of being over-protected, many survivors reported the occurrence of social processes, often coming from different sources (for example, being over-protected by parents but abandoned by school friends).

Care received from parents, siblings, partners, and close friends was readily acknowledged by almost all participants. In this account, the cancer experience was described as creating a circle of supporters.

The friends and family that did find out have been so supportive. . . . It’s been very medicinal and healing having all of the love and support from my friends and family. (Adam, diagnosed with NHL is his late twenties)

Absence of family close by or willing to help or lack of a romantic part- ner posed unique challenges for young adults. Survivors with dependents discussed the drive they experienced to keep pushing forward, even when they felt scared or tired or sick from treatment. They described this drive as a function of the need to take care of others:

Whenever I get chemo, I don’t feel good and I have to be there for [my daughter] because she’s dependent on me. So I have to keep on going. (Elaine, diagnosed with ALL in her midteens)

Elaine’s comment reflects the intertwined experiences of fighting cancer and being a parent. These are two experiences that are deeply intense but also non-normative for an adolescent. Although her comment speaks to the role that dependents can play in helping to motivate AYAs, it also reveals how confusing it can be to become a cancer survivor and a mother at this age.

Some survivors expressed alternating appreciation and frustration for their family’s role in their care. Survivors discussed grappling with their own emotional responses to the cancer experience, which were compounded by the need to also mitigate their caregivers’ stress. The term helicopter (as in “helicopter parenting”) was also used to signify family members’ hovering and vigilance behaviors. These behaviors were described with positive and negative connotations; vigilance created a stable, supportive presence, but it also restricted privacy and independence. Some AYAs who had recently transitioned to living on their own found themselves living with their parents during and after cancer treatment. This presented benefits and challenges: the benefits of being cared for and supported and the challenges of feeling infantilized by their families and situations.

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Another topic that emerged in changing social relationships was the im- portance of connecting with other survivors. Past research has suggested that connecting with other survivors is an important aspect of the healing process for young adults with cancer (Zebrack, Bleyer, Albritton, Medearis, & Tang, 2006). Many participants discussed how much they valued the relationships they had made with other survivors:

They called us “the three musketeers.” One of them was through every- thing, including the transplant. The next one, in the middle, she was . . . doing her chemo for her transplant. And I was the last one. . . . So I was the newbie on the block . . . [a]nd . . . there’s times of feeling alone and no one has any idea—from your mother to your boyfriend—has any idea of what you’re going through. So, I formed relationships and bonds with these two ladies and [we talked] all night long on the phone. (Hannah, diagnosed with acute myeloid leukemia [AML] in her midtwenties).

Although many survivors reported the value of finding a community of other survivors, some found it difficult to find survivors close in age and with similar interests:

When I was in treatment, the support groups that were available to me were men and women in their ‘50s and ‘60s. The men were all prostate cancer survivors and the majority of the women [had] breast cancers and here I am with my lymphoma as a 32-year-old, thinking I just want to get better because summer’s coming. I want to go to concerts and baseball games. (Jason, diagnosed with Hodgkin’s lymphoma in his early thirties)

Jason’s comment reflects the social isolation that AYA cancer survivors may face when attempting to establish peer groups or survivor networks that share common interests and face similar challenges. This issue is salient because it not only affects survivors’ social networks but may also affect their participation in research studies. For example, several participants indicated their participation in the current study was driven by an interest in meeting other survivors.

For many survivors, the experience of having cancer was catalytic in changing social relationships, either enhancing intimacy or creating distance. Some survivors who reported a loss of friends attributed this phenomenon to cancer and the discomfort it engendered in others:

Once you get diagnosed, you’re instantaneously probably going to lose about 90% of your friends because they get uncomfortable. It’s almost like we remind them of mortality and they don’t understand that just because, just because we have cancer doesn’t mean we’re going to die. (Dan, diagnosed with a brain tumor in his late twenties)

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This phenomenon was not isolated to casual acquaintances; as one survivor noted, even close relationships could change and erode:

I actually lost my best friend through this whole thing. My best friend in the world . . . He just wasn’t there for me. . . . And it was my best friend since we were 5 years old . . . he just wasn’t there for me at all. And he didn’t even call to see how I was doing. (James)

Two of the female participants reported getting divorced during treat- ment. Each expressed that the cancer experience catalyzed the breakups because their partners were not willing or able to support them through their disease. Many participants asserted that having cancer pushed them to be more direct and honest about the status of relationships and to be ready to end relationships that they could no longer prioritize.

Challenges related to initiating new romantic relationships and main- taining current relationships also surfaced. Most participants agreed that the experience of having cancer puts significant stress on new relationships. Most single participants either avoided the topic of dating, or mentioned they were not ready to begin dating. One of the participants reported diffi- culty believing he would be able to find someone to love him again, lacking the confidence and trust to begin dating. One aspect of the AYA experience that was not fully captured in the discussions was discussion of sexuality. Sexuality can be a difficult topic for cancer survivors to broach, regardless of age, and the focus group format of this study may have influenced survivors’ discussion (or nondiscussion) of this sensitive topic.

Financial burden. Survivors described the challenges they faced re- lated to securing and maintaining health insurance and supporting them- selves and their families. Their comments reveal high levels of stress and worry and personalize the realities of being un- or underinsured as an AYA. Decreased survival for young adult cancer patients who lack health insur- ance at the time of diagnosis has been reported previously (Kent et al., 2010; Kent, Sender, Largent, & Anton-Culver, 2009), and the stories relayed in this study explain why: diagnostic delays, receipt of treatment in emer- gency rooms, and the concurrent stress of maintaining employment while undergoing treatment may exacerbate illness. Many young adults are inde- pendent and/or supporting young children and have difficulties suspending competing demands on their time and energy when undergoing treatment.

Approximately one third of the participants mentioned difficulties in acquiring or maintaining health insurance. Some lacked insurance before their diagnosis because they could not afford coverage and/or felt that they did not need coverage. Others had insurance at the time of diagnosis but worried about future insurability. It is common for young adults to begin their careers at jobs in which they are not offered health insurance coverage by their employers. Young adults may also experience a gap in coverage

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between high school, college, and full-tune employment. Survivors may find themselves unable to be covered by their parents but not in a position to obtain other insurance. Affordability and access to insurance was also a problem for participants who were working but did not receive coverage through their employers. This scenario can force AYAs to seek treatment in an emergency room, a nonoptimal strategy given crowding, wait times, and lack of continuity of care (Olson, 1994).

One day, a lump came out right here on my neck, as big as an egg. And then they did an X-ray and they found that all the lymph nodes on my spinal column and all over my body was really, really big. That it was a really growing . . . fast-growing cancer . . . I was going to the doctors. And I was paying cash. We didn’t have insurance at that time. And when they found out from the labs that I had cancer, I went to the emergency room because I was almost dying. (Chloe, diagnosed with NHL in her midtwenties)

Chloe’s account exemplifies the situation of being forced to visit an emer- gency room due to lack of insurance. Although the reasons for being unin- sured varied, participants who lacked insurance at the time of diagnosis related stories of crisis. Lacking a health care home, a clear treatment plan, or strategy for paying for treatment compounded cancer-related stress. Par- ticipants who lacked insurance reported eventually being able to secure government-assisted insurance (usually Medicaid), but in all cases, they re- ported that this process delayed their treatment.

Young adults are often fulfilling and developing multiple new roles, given that early adulthood is often spent starting a career and raising a fam- ily. The perceived disregard by clinicians for the competing responsibilities that young adult cancer patients may have, such as taking care of young children, was evident in discussions. Although all cancer patients experience interruption in their daily activities, the concerns expressed by AYAs suggest a gap in support and services aimed at assisting with needs such as childcare, transportation, and elder care.

The AYA Paradox

The AYA survivors who participated in this study revealed insights into the paradox of having cancer (a set of diseases more prevalent in older age groups) while being young and the resulting tension between being ill and necessarily more dependent on others while in the process of transitioning to independence. In most cases, the cancer diagnosis interrupted develop- mentally normative life plans, and in some cases delayed or prevented the attainment of important milestones such as attending prom, studying abroad, going to graduate school, getting married, and having children. Revenson and

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Pranikoff (2005) discussed the concept of “off-schedule” illness, in which sur- vivors are diagnosed at younger ages often have few age peers to relate to and no time to prepare for disease onset, which then leads to difficulty in securing resources and coping. One participant summed up this interruption:

I think, no matter how old you are when you’re diagnosed, there’s al- ways interesting circumstances that happen in that point in time, but particularly in high school, there’s prom; there’s getting your driver’s li- cense. There’s all those different types of things that get postponed or colored because of your experience while you’re sick. (Amy, diagnosed with Hodgkin’s lymphoma in her midteens)

Participants themselves expressed a feeling of surprise about having to deal with cancer at this point in their lives. They felt it represented a more significant roadblock than it would for either an older or younger patient.

I think what a lot of people don’t understand is that when you’re diag- nosed and going through this cancer, you are . . . you’re not the same as everyone else in the room. You go to see the oncologist and everybody else looks different. They’re all, typically, much older than you. . . . In my case, they were more sick than I was. They have different concerns. My wife would go to a support group and everybody there definitely had different concerns. She was interested in will she be able to have a baby and they’re all interested in will they be alive. (Donald, diagnosed with testicular cancer in his midtwenties)

Some of the participants indirectly referred to symbols or metaphors that reflect the perceived exclusion of their age range in cancer care and research. One group joked about the magazine selection for patients receiv- ing treatment in cancer centers, noting the selection included only children’s magazines (e.g., Highlights) and magazines for older adults (e.g., AARP - The Association for the Advancement of Retired People). One survivor referred to the generational gap as a “diapers vs. dentures” issue. These comments reflect that not only is it difficult for AYAs to come to terms with their illness at their current life stage, they also struggle to find a place to belong in the health care system.

DISCUSSION

The young adults who participated in this study revealed deep insight about issues related to surviving cancer in adolescence and young adulthood. The themes that emerged from discussions with these young survivors reflect not only unmet needs but also a level of complexity should be recognized with interventions that are tailored to the needs of young adults. Results

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support five key implications for future research in AYA survivors: improving survivor outreach across the cancer care continuum, addressing family and social relationships, increasing access and affordability of health insurance, providing career and educational counseling, and recognizing AYAs as a unique survivorship population.

Improving Communication Across the Cancer Care Continuum

Survivors’ stories reveal opportunities for improving communication about cancer, treatment, side effects, and adherence to treatment and medication regimens. Past research has identified that AYA survivors need comprehen- sive information for treatment decision making, multidisciplinary provider teams, opportunities to connect with other young adult patients, and consis- tent and adequate health insurance coverage (Zebrack, 2008; Zebrack et al., 2006; Zebrack, Chesler, & Kaplan, 2009). The participants of this study sug- gest that a consistent and accessible system for organizing relevant health information is imperative, and that health care providers should consider how AYAs might prefer to receive this information. Current efforts to expand and standardize survivorship care planning (Institute of Medicine, 2006) should also consider the many life phases AYAs undergo as they transition through their cancer journey. Many may be highly mobile during this time period and may need a way to access their records remotely. Some may be transi- tioning off follow-up care at a pediatric center and may need to find a new medical home for their care. Care coordination over time, though critical for all cancer survivors, must be considered carefully for AYA survivors.

Addressing Family and Social Relationship Issues

The effects of cancer on relationships emerged as a dominant theme in the findings. The participants reported that in addition to providing care, family and friends serve other important roles in the coping and healing process, such as providing support and motivation. One study found sig- nificant discrepancies in the level of importance placed on connecting with peer survivors between patients and providers (Zebrack et al., 2006). Patients placed this as a top priority, whereas doctors and nurses ranked this signif- icantly lower. The benefits of pairing newly diagnosed patients with other survivors or survivor networks have been increasingly recognized by oncol- ogy care providers, but awareness of opportunities to connect AYA patients to such outlets remain limited, as evidenced by the reports of several par- ticipants. Several support and advocacy organizations now provide services to help connect newly diagnosed patients with online networks. However, in-person peer support is limited, and avenues for creating such programs

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should be further explored (Treadgold & Kuperberg, 2010). Furthermore, support services should be available along the cancer care continuum to help AYA survivors link to needed support to address their needs at diag- nosis, during treatment, as they transition to recovery and years later as new developmental challenges history emerge (e.g., partnering and having chil- dren). Finally, information provision and counseling services for survivors and their support-givers to help with communication and managing rela- tionships should be included in comprehensive survivorship care plans and integrated into follow-up care (Institute of Medicine, 2008).

Increased Access and Affordability of Health Insurance

Young adults in the United States are the least likely of all age groups to have adequate health insurance (Ward et al., 2008). Lack of health insur- ance can lead to delays in diagnosis (Martin et al., 2007), delays in receiving treatment (Burg et al., 2010), and decreased survival (Kent et al., 2009; Kent et al., 2010) in young adults with cancer. In addition to improving health care coverage for the general population in this age range, policies to provide insurance for young adults with cancer throughout their lifespan are neces- sary and long overdue. The Unites States Affordable Care Act of 2010 now allows individuals younger than age 26 to be covered by their parent’s health insurance, prohibits lifetime limits, and phases out annual limits for coverage for essential benefits (Bleyer, 2010). These provisions have the potential to increase access to insurance and reduce some degree of financial burden, which could remedy delays in diagnosis and treatment for AYAs. However, AYAs may still experience difficulties as they age out of the coverage period. More comprehensive health care reform not tied to an arbitrary age limit and designed to promote preventive health care could shorten the time many individuals wait to seek medical attention, improve diagnostic and treatment delays, and reduce the financial burden and stress associated with being ill and uninsured.

Career and Educational Counseling

In addition to increased access to health insurance, AYAs need assistance with navigating career and educational trajectories and these concerns need to be integrated into comprehensive survivorship care. Survivors’ reports about competing responsibilities while undergoing treatment underscore the need for health care providers to consider the many roles that young adult patients play and to remember that these may be new roles for young adults who are not well established in the workforce. Adolescent and young adult survivors in particular may need more assistance managing transportation

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needs, child care, and reentry to school and to the workforce (Thompson, Palmer, & Dyson, 2009). Furthermore, guidance about employment protec- tions for those with a disability or history of cancer should be routinely provided (Taskila & Lindbohm, 2007).

Recognizing AYAs as a Unique Survivorship Population

From diagnosis through treatment and follow-up, the results demonstrate instances in which AYAs felt the medical care system could have been more sensitive to AYAs’ age and life stage. Some survivors suggested physician education programs in AYA medicine, to help train general practitioners and oncologists to recognize and respond to AYA issues. Challenges such as overcoming assumptions about AYA patient compliance (Gesundheit et al., 2007; Windebank & Spinetta, 2008), improving communication about treat- ment options (Zebrack, Chesler, et al., 2009) and fertility preservation (Fallat & Hutter, 2008; Hart, 2008), and maintaining better and more consistent long-term follow-up (Absolom et al., 2009) were highlighted in this study.

Limitations

This study has some limitations inherent to focus group methodology, in- cluding the restriction of only observing verbal behavior and self-reported data, in particular what is chosen and said aloud (Morgan, 1997). Participants are aware of being in a formal setting, of their distance from the facilitator, and of the presence of a recorder. In addition to the setting, the impact that the facilitator may have had on the discussion is not ignorable, although as the discussion progressed, participants tended to be more and more relaxed with their comments, indicating increasing comfort with the discussion. Al- though the number of participants was small, the sample yielded patterns that emerged with some consistency from the first to the last group and in- dicating that enough data were gathered to have gained complete accounts of the experience (referred to as “saturation”; Cohen et al., 2000). Further- more, the use of thick description to highlight specific social context that the survivors in this study encountered as AYAs strengthens the likelihood that our findings are likely transferable to AYAs with other tumor diagnoses and from other regions (Lincoln & Guba, 1985).

Some AYA perspectives may have been omitted due to the composi- tion of the sample. Although the sample includes individuals with a diverse range of diagnoses (representative of the most common cancer types in AYAs; Bleyer, Viny, & Barr, 2006) and is representative of both genders, it underrepresents individuals in the Asian Pacific and African American racial groups. Because of the sample composition, the experiences of these

276 E. E. Kent et al.

individuals, as well as non-White AYAs more broadly, are underrepresented, as in most AYA research. This topic warrants future research, due to the unique ways in which disparities in detection, surveillance, and access to care during and after treatment may unfold for AYAs in underserved groups. Finally, study participants were recruited through an AYA survivor network and a comprehensive cancer center. All individuals were currently on treat- ment, actively engaged in follow-up care, or engaged in an AYA network. It is likely that those receiving care from a comprehensive cancer center were receiving relatively high-quality care and some degree of follow-up. More- over, those who were involved in the AYA survivor network were familiar with AYAs as a “brand” and/or identity. The implication of these two inter- secting factors is twofold. First, the study participants may be more aware and/or articulate about the needs and unique contributions of AYAs than the general population of AYA survivors. Second, this group may have had rel- atively better experiences with the health care system than individuals who are not actively engaged in treatment or follow-up care with a health care system. The implications of this are that we may have underestimated the overall impact of cancer on AYAs in many ways, such as financial burden, social isolation, and effects on education and career trajectories.

Future Directions

This study represents one of the few qualitative studies documenting cancer experiences in young adults (Jones et al., 2010; Miedema, Hamilton, & Easley, 2007; Peterson-Sweeney, 2005; Thompson et al., 2009; Yi & Zebrack, 2010; Zebrack, Chesler, et al., 2009). As such, it provides specific information about how and why AYAs’ experiences are similar to yet unique from other cancer survivors’ experiences. The accounts reported herein may aid future quanti- tative investigations by pinpointing key areas for exploration. Future inquiry regarding challenges faced by this population in seeking treatment should explore experiences leading up to diagnosis and should identify any barri- ers (self-imposed or external) that may postpone medical attention seeking. Inquiries into financial challenges faced by AYAs should include but not be limited to health insurance; rather, investigations should also seek to explore issues related to the competing responsibilities of maintaining employment and/or finding new employment during treatment and survivorship when one is at an early stage of career and job experience.

This study highlights specific unmet psychosocial needs that AYAs face along with insight into the paradox of being young and having cancer. Questions about how to best meet these needs remain, and as AYAs continue to grow in number, a long-range view on the dynamic needs of survivors is important for researchers and clinicians to maintain. We hope that studies using focus groups and other qualitative methods continue to provide a space

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for survivor voices particularly as interventions continue to be developed and tailored for AYAs.

NOTES

1. Aliases were given to the participants for identifying their statements in this article. 2. “Thematic universe,” a concept put forth by Paulo Freire (2000), refers to the “complex of gen-

erative themes” (p. 96) and involves meaning making that can only be born out of dialogical interactions among people. The term is used deliberately here to signify the interaction of multiple levels of themes that actually exist in the social world.

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Hart, R. (2008). Preservation of fertility in adults and children diagnosed with cancer. British Medical Journal, 337, 1045–1048.

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Oncology Social Work in

W ith regard to cancer, two facts are clear: cancer is the second leading cause of death in the USA,1 and the consequences of unmet psychosocial needs for those with terminal cancer have

evastating consequences for quality of life experienced.2 The medical iterature on this topic recognizes the importance of addressing these eeds and recommends that the education and training for oncologists nclude skills necessary for assessing and handling psychosocial issues.3-5

This body of literature, however, does not address the importance of oncologists understanding the role of the oncology social worker, whose training and experience is focused exclusively on insuring that the psycho- social needs of individuals diagnosed with cancer are addressed. The oncology social worker is an important resource for oncologists, whose time allotted to patients is often focused out of necessity on medical issues and less on psychosocial needs. As the number of palliative care teams continues to grow, oncologists and oncology social workers will increas- ingly find themselves working together. If the team is to address holistically the needs of individuals with cancer, capitalizing on the social worker’s expertise and skills will be crucial.

This article seeks to heighten the awareness and understanding of oncology social work, as well as the contribution this profession can make to oncologists and other members of the palliative care team. First, the reported psychosocial needs of cancer patients and their families are discussed. Next, the skills, knowledge, and theoretical approaches a social worker uses to meet those needs are detailed. Finally, the relationship between oncology social workers and the oncologists with whom they work daily is addressed. It is hoped that the information provided in this article will result in an increased recognition of what oncology social work has to offer individuals grappling with the devastating effects of cancer, and to the oncologists who work to provide these individuals with

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sychosocial Needs of Patients Diagnosed with erminal Cancer Much has been written about the psychosocial needs of individuals iagnosed with terminal diseases, many of whom had a cancer diagnosis. ne line of research that has contributed a great deal of insight into the sychosocial needs of individuals at the end of life is the study of the actors that motivate individuals diagnosed with cancer and other terminal llnesses to consider a hastened death. Research has been conducted both retrospectively with health care rofessionals and family members and prospectively with terminally ill ndividuals. In regard to the retrospective reporting, individuals who ought a hastened death were motivated by psychosocial factors, such as ack of enjoyment in life,6 loss of control,6,7 fear of future pain,6,8 loss of eaning in life,9 feelings of being a burden,6,9 and loss of dignity6,9 and

utonomy.6 Prospectively, terminally ill individuals, many of whom were iagnosed with cancer, reported the same psychosocial factors as those eported retrospectively, as well as others. In regard to social support, ndividuals reported having few social supports,10,11 a lower quality of ocial support,10,12,13 conflictual social support,11 low satisfaction with ocial support,14 and a lack of social support.15 In addition to social upport needs, individuals also reported anxiety,12 depression,12,13 a lack f enjoyment in life, feelings of being a burden and useless,16 and a lack f control.16

Studies focused solely on cancer patients have also found psychosocial eeds to be prevalent. In a large study of oncologists, 72% reported that heir patients experienced psychosocial distress over issues that included ogistics, coping with their illness and treatment, and addressing the oncerns of their partner and children.17 In a qualitative study, researchers nterviewed young adults diagnosed with cancer, who reported experi- nces with emotional distress and a lack of social support.18 Researchers onducted a review of studies on depression and cancer and discovered vidence that depression can make coping with cancer more difficult, and t can negatively affect immune functions.19 A major study of 4500 atients diagnosed with cancer found that 35% reported experiencing sychological distress, and this distress was greatest for respondents hose cancer had a poor prognosis.20 In another study, fatigue, a key

ymptom of cancer, was found to be correlated with depression.21 Finally, n a systematic review of 94 studies conducted on the prevalence of unmet sychosocial needs, such needs were determined to be present both during

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ypes and Times In studies of individuals diagnosed with cancer, evidence has been

ound concerning the psychosocial distress associated with a particular uncture in the cancer journey or with a particular type of cancer. In a ualitative study of 96 terminally ill elders, 15 reported 4 critical events n their dying process that resulted in psychosocial suffering: two-thirds f these individuals were diagnosed with cancer.23 These 4 events ncluded being given a terminal diagnosis in what was perceived of as an nsensitive and uncaring manner; suffering unbearable and untreated hysical pain; not addressing the feelings individuals had about having to eceive chemotherapy or radiation treatment; and receiving care in a tressful environment. Concerning types of cancer, researchers have ound that persons with lung cancer had a significantly high risk of xperiencing psychosocial problems, such as depression and anxiety, fter both diagnosis and treatment.24 Forty-seven percent of 236 newly iagnosed breast cancer patients were determined to have experienced igh levels of distress resulting from worry, nervousness, and depres- ion.25

Knowledge of the types of psychosocial issues experienced by individ- als diagnosed with cancer, as well as particular times of vulnerability nd cancers that may put people at higher risk of psychological distress, s key to determining how best to intervene and address such issues. onsistently, authors of these studies point out the need for psychological

creening and early intervention,16,20,25 particularly at the time of iagnosis.24 Researchers also agree on the need for more research to efine current assessment procedures and develop interventions that ddress more effectively emotional distress in individuals diagnosed with ancer. Both assessment of psychosocial issues and intervention are the ey areas of expertise possessed by trained oncology social workers.

ncology Social Work The main providers of psychosocial services in cancer centers and ealth care settings in the community are oncology social workers.26

hese professionals possess significant knowledge of cancer, the resulting sychosocial issues, and the intervention strategies for addressing such ssues. The training and skills provided to social workers through their graduate

ducation makes them uniquely suited to work with cancer patients. First, he social work profession is distinctive in its use of a person-in-

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etween the person and his or her environment, and how he or she is nfluenced by interactions with the environment. Social workers view ndividuals as being dynamically involved with systems in the environ- ent that include family, friends, work, social service organizations,

eligions, health care, educational, government, and culture, to name a ew. The person in his or her environment is a whole in which the person nd the situation are both cause and effect in a complex set of elationships. The social worker does not assess the person and then his r her environment; rather, social workers advocate treatment of the erson within the context of his or her environment. When seeking to ddress the psychosocial needs of a client, the social worker directs the ntervention at improving the interactions between the person and his or er environment. In regard to oncology social workers, this unique approach provides the

ocial worker with assessment skills that “reflect a patient’s place in a roader environment of relationships, resources, and copying history vailable to him as he struggles to integrate his prognosis and meet the emands of treatment.”27 The resulting assessment “communicates that he social worker is interested in the patient as a person who has a valued ife beyond cancer treatment.”27 Furthermore, it assists in creating and mplementing interventions aimed at concurrently strengthening the lient’s adaptation to being diagnosed with cancer, as well as strength- ning the environment’s responsiveness to that individual’s needs.26

The second aspect of social work training that prepares oncology ocial workers for their work is the practice of defining the unit of care s both the client and his or her family. This aspect evolves from the erson-in-environment approach and, as has been found by research- rs, recognizes that family members of cancer patients are also mpacted by a cancer diagnosis, particularly when the cancer is dvanced and incurable. Research has shown that providing care and upport to a loved one at the end of life can be both emotionally and hysically challenging; therefore, recognizing and being sensitive to amily members’ needs are crucial.28

Finally, advocacy and resource acquisition are also skills possessed by ocial workers, which relate directly to the work performed by those orking with individuals diagnosed with cancer. Individuals with ad- anced cancer may lack the strength necessary to advocate for their references concerning care and treatment provided. The oncology social orker can step in and serve as an advocate for the client with family embers and/or medical professionals, as well as advocate for family

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hat the social worker be skilled at acquiring the resources requested and eeded. Again, the person-in-environment approach comes into play in hat the social worker’s initial assessment of the client includes the nvironment in which he or she lives. Recognition of family, neighbor- ood, community, state, and federal systems provides the social worker ith knowledge of available resources and how to acquire them.

elationships with Oncologists on a Palliative are Team The growth of palliative care teams in hospitals has reportedly increased

rom 600� teams in the year 2000 to approximately 1500 in 2011, a rowth of about 138%.29 Data remain limited as to the effect of palliative are teams but some studies have found that family satisfaction is ncreased30; the benefit is greatest for home care,31 and experiencing egular oncological care along with the early involvement of the palliative are team can lead to increased quality of life and survival.4 Evidence is vailable, however, showing that nonmedical team members experience hallenges concerning communication and collaboration with team mem- ers. In particular, the nonmedical team members have been shown to xpress some dissonance because of the dominance of physicians around ecision-making.32 The discord experienced between medical and non- edical team members may be due in part to a lack of education

oncerning the expertise and skills that each professional brings to the eam. Education on the part of all disciplines should include such nformation, as well as more training on working effectively as a team. In regard to the relationship between physicians and social workers, the

raining provided to each differs. Physicians are trained to be team leaders nd to serve as the “final authority for all decisions,” a trait that is nderlined by the life and death decisions they make, as well as the ossibility of malpractice suits.33 By contrast, social workers are trained o “collaborate and build consensus on teams and that they are experts in ommunications and counseling” such that decision-making is to be hared.”33 In addition to the differences in their training, personality, level f self-confidence, and control needs can also present as challenges. Recognition of differences and strengths may serve to contribute to a ore collaborative relationship between oncologists and oncology social orkers. It is hoped that articles such as this one will increase the

wareness of the role that oncology social workers can play in meeting

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onclusions The training and education provided to oncologists often focus on how

o initiate discussions of patients’ psychosocial issues, as well as how best o address them. Research continues to show, however, that although ncologists recognize the importance of doing so, a large proportion of hem do not follow through in practice.5 Just as the oncology social orker’s expertise lies with assessing and developing interventions to

ddress the psychosocial needs of cancer patients, the expertise of the ncologist is to address the medical needs of these patients. Working ogether on interdisciplinary palliative care teams, oncologists and oncol- gy social workers can each bring their expertise to the table and insure hat cancer patients and their families receive the quality holistic care they o richly deserve.

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2. Goldsmith J, Wittenberg-Lyles E, Rodriguez D, et al. Interdisciplinary geriatric and palliative care team narratives: Collaboration practices and barriers. Qual Health Res 2010;20(1):93-104.

3. Nadicksbernd JJ, Thornberry K, von Gunten CF. Social work and physician collaboration in palliative care. In: Altilio T, Otis-Green S, editors. Oxford Textbook of Palliative Social Work. New York: Oxford University Press, 2010. p. 471-6.

64 Curr Probl Cancer, November/December 2011

An Uninvited Guest: Addressing Students’ Death Anxiety in Oncology Social Work Field Placements Meuche, Glenn . Field Educator ; Boston  Vol. 7, Iss. 1,  (Spring 2017).

ProQuest document link

ABSTRACT (ENGLISH) Field placements present a wide breadth of challenges that afford students fertile ground to refine their clinical

skills of active listening, engagement, and relationship. The inclusion of a curriculum that encourages self-

reflection and centers on students’ attitudes and beliefs surrounding end-of-life care has a positive influence and

direct correlation to their comfort level and openness to speaking with their clients about death and dying. The

supervisory relationship has been heralded as the cornerstone in the development of effective clinicians and as

the quintessential learning experience for the clinician, the foundation of students’ educational growth and

development, and the therapeutic alliance in which supervisees develop their own style. (Sormanti, 1994, p. 75)

Death anxiety and unfamiliarity with regard to skills that are solicited in oncology social work and end-of-life care

may account for students’ difficulty in recognizing the clinical dimension of these field placements. The clinical

skills employed in oncology social work placements are unique and often different from interventions used for

instance, in mental health venues. Students discover themselves struggling with the clinical skills of the capacity

to sit with the silence and offer the gift of presence in end-of-life care. “Curricula that include discussions about

the psychology of illness, including defenses and their usefulness in helping people adapt to the many anxieties

raised by severe and life-threatening illnesses, would prepare students better for oncology placements” (Sormanti,

1994, p. 84). Bridging the academic component with the affective dimension of social work practice is integral to

the development of clinical acuity... FULL TEXT Social work student internships are an indispensable ingredient in the formation of students’ professional identity.

Field placements present a wide breadth of challenges that afford students fertile ground to refine their clinical

skills of active listening, engagement, and relationship. The issues that are addressed by students specializing in

psychosocial oncology and end-of-life care are unique. Students in these field placements are not only confronted

by their clients’ dying and death, but forced simultaneously to reconcile themselves to their own mortality as well.

Why, you may ask, take on this unpleasant, frightening subject? Why stare into the sun? Why grapple with the most

terrible, the darkest and most unchangeable aspect of life? […] Death […] is always with us, scratching at some

inner door, whirring softly, barely audibly, just under the membrane of consciousness. (Yalom, 2008, p. 9)

Death is an inescapable mortal wound that everyone experiences. Engaging with those who are dying is not an

isolated event, but instead, a collective experience. “Dying is a relational event, and the clinician cannot be neutral,

absent, or objective” (Berzoff, 2008, p. 182). The realization of death can become a wellspring, therefore, for

opportunity and growth. Its inevitability provides the impetus for us to engage with others in personal and intimate

ways.

Although the universality of death has the potential to connect human beings to one another on a deeper level, it

can lend itself to an existential crisis and heightened experience of death anxiety. Anxiety surrounding death

references “the perceived amount of emotional distress provoked by the anticipated total nonexistence of the self”

(Hui, Bond, &Ng, 2007, p. 200). Fear of death repeatedly is the “pink elephant in the room.” Its presence is palpable

and yet it often remains unspoken. Death anxiety can range from a fear of ego-dissolution and annihilation to fear

of the dead. It may reveal itself in anxiety over the process of dying and fear of the unknown. Field instructors can

help students embrace these fears, reframe them, and understand how death anxiety can enhance the therapeutic

relationship and their capacity to share in the suffering of the other.

Clinically, the experience of death anxiety may contribute to students’ difficulty in establishing alliances and

facilitating rapport with their clients. The fear of death for instance, can manifest itself in students’ reticence in

initiating dialogue with their clients and sharing in meaningful conversation pertinent to death and dying. Students

may attempt to change the subject because of concern over upsetting their clients or engage in positive thinking

or reframing of their clients’ experience. In its worse scenario, death anxiety may translate to an avoidance of the

person who is at the end-of-life.

Professionals in end-of-life care have directed their attention to social work education and criticized the absence of

adequate training at times within the arena of death, dying, and loss. “Social work educators and clinicians have

repeatedly pointed out the need for social work curricula to place more emphasis on social workers’ attitudes

toward death, dying and bereavement” (McClatchey &King, 2015, p. 347). The inclusion of a curriculum that

encourages self-reflection and centers on students’ attitudes and beliefs surrounding end-of-life care has a

positive influence and direct correlation to their comfort level and openness to speaking with their clients about

death and dying.

The importance of death education to impart content knowledge about the death process and gaining insight into

the death attitudes of helping professionals has been emphasized by students, practitioners, educators, and

ethicists. It is clear there is a near universal agreement on the need for the inclusion of death education in the

training of helping professionals. (McClatchey &King, 2015, p. 346)

Therefore, it is critical that field placements situate emphasis on the experiential as well as the academic and

clinical component. Supervisors can encourage introspection and help student interns begin the process of

examining their insecurities and vulnerabilities pertaining to death, dying, and loss. This, however, would also

require field instructors to exhibit a willingness to recognize and connect with their own death anxiety and the

manner in which this impacts and directs their clinical work. Students not only model the clinical skills we impart

to them, but also with their clients they mirror the supervisory experience.

The supervisory relationship has been heralded as the cornerstone in the development of effective clinicians and

as the quintessential learning experience for the clinician, the foundation of students’ educational growth and

development, and the therapeutic alliance in which supervisees develop their own style. (Sormanti, 1994, p. 75)

Death anxiety and unfamiliarity with regard to skills that are solicited in oncology social work and end-of-life care

may account for students’ difficulty in recognizing the clinical dimension of these field placements. “Students

sometimes expressed concern that an oncology setting is ‘not clinical enough’ and that they feel they cannot apply

what they are learning in social work classes to their fieldwork” (Sormanti, 1994, p. 80). The clinical skills employed

in oncology social work placements are unique and often different from interventions used for instance, in mental

health venues. “Students describe clinical work as treatments with patients who can be labeled with a […]

diagnosis and as work that can be done in an office setting in 50-minute hours under a mutually agreed-on client-

worker contract” (Sormanti, 1994, p. 80). Students discover themselves struggling with the clinical skills of the

capacity to sit with the silence and offer the gift of presence in end-of-life care. “Many students are uncomfortable

with emotionality, in part related to their own histories, but also because they may not know ‘how to sit with it’ or

what to ‘do with it’ professionally” (Urdang, 2010, p. 531). Students’ discomfort with these skills may preclude their

ability to establish and foster therapeutic relationships with those who are dying. Beginning where the person is

entails the recognition of the innateness of suffering in the human condition and readiness, therefore, to begin

where death and dying are. “Being present means tolerating one’s own anxiety about death in order to be able to

help clients and families to tolerate their own” (Berzoff, 2008, p.179).

The following excerpt illustrates the discomfort that students experience. S was a student intern working with a

woman whose husband was diagnosed with stage IV metastatic pancreatic cancer. Her husband’s prognosis was

poor and although death was present, it nonetheless remained the “pink elephant” as the student was reticent in

opening the door. In addition to feeling confused and frightened by the prospect of her husband’s dying and death,

S’s client also articulated struggling with anger over which she subsequently experienced guilt.

Student: I see. It’s good that you’re reaching out to us. We’re here to listen. So I understand that he’s receiving

treatment for his pneumonia? How did that go?

Client: He’s doing well. He’s already back at home. Next month I’m going to meet with the oncologist. They said he

still has a 4mm tumor left. They shrank it down from 6mm. They’re talking about putting him on additional

chemotherapy to shrink the rest. He may even undergo a clinical trial. But my husband, he doesn’t want to. He said

his body is not able to handle it right now. And I don’t blame him. I won’t force him to go back. But I’m sure he will

change his mind once he talks to the doctor.

Student: Chemo must have been rough for him.

Client: Yeah it was. You know, he lost all of his hair. When it first started, he would just put his hand through his

hair and a bunch of hair could come out. He decided to shave it all off. Now he wants to wear hats. I always joke

with him and use humor to keep me positive.

Student: That’s admirable. Using humor is a very creative and effective way to cope. I’m glad you’re able to stay

positive through all this.

Client: But, you know, I also get angry over all this as well. It just isn’t fair what is happening to him. And then I feel

guilty for feeling this way. It’s hard sometimes.

Student: I understand that you and your husband moved recently?

Client: Yeah, I mean our families are here so there are always people checking in on us.

Student: I’m glad to hear that you have supportive people around you to help you cope with your husband’s

diagnosis.

Client: I won’t give up. I always know that God is out there looking out for me and my mother in heaven is looking

down on me.

In reflecting upon what transpired in the session, S was uncertain as to whether or not attention should center on

anticipatory loss or, instead, the client’s anger and guilt. The student writes, “It seems like the client wanted a place

to vent her worries that she cannot share with her husband. She mentioned feeling angry and that this might

perhaps be a goal for her to work on. I did not dwell on it further as our time was up and I was not sure if the anger

has anything to do with the cancer. However, this is a topic that can be clarified and possibly pursued if it

surrounds her husband’s cancer. Maybe I should go over goal setting with her instead of letting her vent? Even

though her initial request for counseling was simply to ‘have someone to talk to’ how do I shape this into a more

structured and organized discussion?”

The establishment of the therapeutic relationship is an integral aspect of oncology social work and end-of-life care.

Students discover themselves struggling at times with use of self and what they should disclose and reveal to

clients within the session. Many students, for instance, who herald from mental health settings, are dissuaded

from engaging in self-disclosure.

Several supervisors shared stories about students who were afraid to acknowledge that they used interventions

such as physical contact and sharing of personal information, which the supervisors believed was appropriate to

use, but students were discouraged from doing so in class. (Sormanti, 1994, p. 80)

Field instructors can respond to students’ concerns by helping them feel more comfortable with the clinical skills

that are encompassed in their work with the dying. Helping students develop the art of presence and encouraging

deep listening will enable them to interact with their clients in rich and profoundly empathic ways. In attempting to

transcend narratives that have been solely reduced to clinical technique, Frank (1998) suggests that:

The deeply ill person is the immediately needy one, and this person’s story deserves primary attention. Clinicians

may share parts of their own stories, but they do so in response to the ill person’s story. Reciprocity is sustained in

the appreciation with which the clinician receives the patient’s stories. To give the gift of listening is to appreciate

receiving the gift of a story. Not just understanding this reciprocity but embracing it seems to me to be the

beginning of clinical work. (p. 200)

Oncology social work and end-of-life care are emotionally laden field placements and students may feel

overwhelmed and stressed by continually witnessing their clients suffering. The intensity and range of emotions

that are articulated by clients can instill feelings of impotency in students. Field instructors have indicated an array

of challenges oncology social work presents to students and have underscored several factors that can contribute

to the complexity of supervising interns in these settings. The most notable influences on students are:

[…] constant confrontation with loss, dying, and death; exposure to physical mutilation and pain; negotiation

between social worker and clients of intense affective responses over a long period; immediate and strong

countertransference reactions; helplessness and frustration at ultimately being unable to save patients; and use of

a less restricted, unconventional set of boundaries. (Sormanti, 1994, p. 78)

Students may discover they are unprepared for this work and field placements sometimes lack the support that is

necessary to assuage the risk of vicarious trauma and compassion fatigue. Supervision, therefore, becomes more

complicated and field instructors may assume greater responsibility with regards to addressing their students’

needs.

Encouraging self-reflection among students can prove beneficial in promoting professional growth and

competency. The creation of a secure environment where students are able to engage in introspection is

paramount to developing insight into their beliefs and values surrounding death, dying, and end-of-life care.

“Students need educational support and direction to deepen their capacity to develop a professional self, including

an ability to recognize, understand, and utilize their feelings and insights on behalf of their clients” (Urdang, 2010,

p. 532). Working in oncology social work can become a potential battleground. A venue where students can

process the clinical work and address countertransference may help to mitigate the risk for burnout.

CancerCare’s student internship program acknowledges the significance of individual supervision and student

peer support groups as crucial in strengthening students’ resilience and enabling them to address the needs and

concerns of their clients who are living with cancer or may be at the end-of-life. Social work professionals have

emphasized the role of intersubjectivity in the therapeutic relationship, especially as it pertains to transference and

countertransference. Urdang (2010) has issued a call for process oriented clinical work and states that:

Students need to understand the interactional nature of work with clients, how to process this internally, and, when

appropriate, directly with clients; they first must learn how to process basic interview crunches before they can

move on to more intense crunches […] from clients. (p. 532)

Utilizing process recordings, for instance, not only serves as a vital tool in promoting self-reflection but elucidates

conscious as well as unconscious interpersonal dynamics between the student and client.

Recognizing the importance of death education in abating the impact of death anxiety, CancerCare has

established “Let’s Talk about Death” round-table discussions.

Helping those coping with death, dying, and bereavement can provoke confusing and frightening existential

questions and painful feelings of personal loss. Coming to terms with death involves both internal and

interpersonal processes that are influenced by individual and societal death attitudes. These attitudes profoundly

influence how one copes with death on an ‘up close and personal’ level as well as an abstract and complex

concept. (McClatchey &King, 2015, p. 345)

In these discussions, students are afforded an opportunity to share and process feelings and fears they may

harbor surrounding death and dying. In addition, CancerCare offers a variety of in-service programs that are

designed to expand students’ comprehension of cancer, treatment, and loss. “Curricula that include discussions

about the psychology of illness, including defenses and their usefulness in helping people adapt to the many

anxieties raised by severe and life-threatening illnesses, would prepare students better for oncology placements”

(Sormanti, 1994, p. 84). Bridging the academic component with the affective dimension of social work practice is

integral to the development of clinical acuity in oncology social work and end-of-life care. “It is imperative that

[students] are not only knowledgeable about the dying process but also feel a certain comfort level working with

this population and have increased insight into their personal attitudes and feelings about death, dying, and

bereavement” (McClatchey &King, 2015, p. 358).

Although death is an uninvited guest and is often depicted metaphorically as the Grim Reaper, it also has the

potential of opening doors to greater interiority and increasing the depth of human relationships. R, a second-year

student in CancerCare’s internship program, reflects:

The internship definitely guided me to raising self-awareness and comfort when having the conversation of death

and dying with others. There seemed to have been emphasis on meeting the clients where they are in their journey

- which I think is unique as CancerCare encourages this. I felt that the topic of death is very abstract and looking

back at my experience, CancerCare seems to be open-minded and supportive in this area.

Students working in oncology social work field placements may find their clinical skills challenged by death

anxiety. Supportive field instructors who are sensitive to the impact of death anxiety on students can help

ameliorate their fear of dying. Students will then become empowered and can begin the process of embracing the

challenge in order to enhance their connection to clients who may be at the end-of-life.

References

Berzoff, J. (2008). Working at the end of life: Providing clinically based psychosocial care. Clinical Social Work

Journal, 36(2), 177-184. doi:10.1007/s10615-007-0119-z

Frank, A. W. (1998). Just listening: Narrative and deep illness. Families, Systems &Health, 16(3), 197-212.

doi:10.1037/h0089849

Hui, V. K., Bond, M. H., &Ng, T. S. W. (2007). General beliefs about the world as defense mechanisms against death

anxiety. OMEGA: Journal of Death and Dying, 54(3), 199-214. doi:10.2190/8NQ6-1420-4347-H1G1

McClatchey, I. S., &King, S. (2015). The impact of death education on fear of death and death anxiety among

human services students. OMEGA: Journal of Death and Dying, 71(4), 343-361. doi:10.1177/0030222815572606

Sormanti, M. (1994). Fieldwork instruction in oncology social work: Supervisory issues. Journal of Psychosocial

Oncology, 12(3), 73-87. doi:10.1300/J077V12N03_05

Urdang, E. (2010). Awareness of self-A critical tool. Social Work Education, 29(5), 523-538. doi:

10.1080/02615470903164950

Yalom, I. D. (2008). Staring at the sun: Overcoming the terror of death. San Francisco, CA: Jossey-Bass. DETAILS

Subject: Internships; Students; Fear &phobias; Curricula; Palliative care; Anxieties; Oncology;

Social work; Professionals; Attitudes; Education; Learning; Field study; Death &dying

Publication title: Field Educator; Boston

Volume: 7

Issue: 1

Publication year: 2017

Publication date: Spring 2017

Publisher: Simmons College

Place of publication: Boston

Country of publication: United States, Boston

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Copyright: Copyright Simmons College Spring 2017

Last updated: 2017-07-31

Database: ProQuest Central

HW11

MGMT 650 Summer 2020 Week 11 Homework Questions (Last updated 4/1/2020)

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