WK 10 Discussion SOCW 8205: Psychosocial Aspects of Cancer Cancer is often synonymous with fear, uncertainty, and death. A diagnosis of cancer begins a long journey that affects physical health, menta

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 .

Wo r r y .

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, determin ing important conse- quences in terms of psychophysical symptomatology. Howe ver, 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 858 Support Care Cancer (2016) 24:857–863 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]isthe 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 ”)to4( “astrong 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 Ta b l e 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 5years[%] 4 8 years [%] 23 13 years [%] 54 ≥16 years [%] 19 Support Care Cancer (2016) 24:857 –863 859 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 thep 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 –6points, 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 ANOVA was 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) 860 Support Care Cancer (2016) 24:857–863 Ta b l e 2Parametric 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, WDQ1scores for the Worry Domain Questionnaire domain 1, relationships, WDQ2scores for the Worry Domain Questionnaire domain 2, lack of confidence, WDQ3scores for the Worry Domain Questionnaire domain 3, aimless future, WDQ4scores for the Worry Domain Questionnaire domain 4, work, WDQ5scores 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-Rscores for the Psychophysiological Questionnaire Fig. 2BContent-dependent ^ worry (WDQ total score) resulted associated with physical symptoms (QPF-R total score) Support Care Cancer (2016) 24:857 –863 861 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, ”“Imakemistakesatwork, ”“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 “Ihaven ’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. 862 Support Care Cancer (2016) 24:857–863 Conflict of interestThe 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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