A typology of caregiving spouses of geriatric patients without dementia: caring, worried, desperate

Background An increasing number of older people in Germany receive care at home from family members, particularly from spouses. Family care has been associated not only with subjective burden but also with negative effects on caregivers’ health. A heterogeneous group, caregivers are confronted with individual situational demands and use different available coping strategies. To date, little is known about the relationship between burden and coping by spousal caregivers, particularly in the context of geriatric patients without dementia. Objectives The aim of this study is to explore the burden and coping strategies of caregiving spouses of geriatric patients without dementia and with a hospitalization within the last year. To help explore this population, a typology is presented that has been based on reported perceptions of home care burden and individual coping strategies. Furthermore, a case study is presented for each type of spousal caregiver. Methods The study used a concurrent mixed method design with a sample of nine spousal caregivers (mean age: 78.9 years). Four women and five men were recruited in an acute hospital setting during the TIGER study. Quantitative data were collected using a self-questionnaire and qualitative data were gathered through nine problem-centered interviews with spousal caregivers. The latter were subsequently analyzed utilizing the structured content analysis method. The data were then summarized to nine individual cases. Finally, the results were clustered using the empirically grounded construction of types and typologies. Each type of spousal caregiver is presented by a case study. Results Three types of caregiving spouses were identified: “The Caring Partner”, “The Worried Manager” and “The Desperate Overburdened”. These types differ primarily in the level of subjective burden and caregiving stress, the coping strategies, the motivation for caregiving, and expressed emotions. Conclusions The development of this new typology of caregiving spouses could help health care professionals better understand caregiving arrangements and thus provide more targeted advice. Trial registration The TIGER study was registered with clinicaltrials.gov: NCT03513159. Registered on April 17, 2018.

Financial distress and its associated burden in couples coping with an advanced cancer

Purpose As the economic burden and financial distress (FD) resulting from cancer care are increasingly recognized, FD remains inadequately understood from the perspective of patients and their spousal caregiver, the relational context where most financial and treatment decisions are navigated. Therefore, we assessed FD in both patients with advanced cancer and their spouses to identify symptom and QOL correlates. We additionally examined if illness communication moderated the association between FD and QOL. Methods Patients undergoing treatment for stage III/IV lung cancer or grade III/IV primary brain tumor and their spouses completed measures of their own FD, QOL, symptoms, perception of their spouse’s symptoms, and overall illness communication. Results Patients (62.7%) and spouses (64.7%) endorsed FD; however, spouses rated FD with greater relative severity. For both, FD was associated with greater anxiety, depression, and poorer physical QOL. For patients, FD was additionally associated with poorer mental QOL. Spousal caregivers accurately perceived patient FD, yet patients underreported spouse’s FD by a clinically meaningful difference. A 3-way interaction (FD X role X illness communication) revealed (b = .40, p = .041) that illness communication moderated the association between FD and physical QOL for spouses only. Conclusion In the advanced cancer setting, FD is prevalent in both patients and their caregivers and associated with psychological distress and poor physical QOL. Results suggest that optimal FD interventions should include patients and spouses. As illness communication appears to buffer the negative association of FD with physical QOL, studies targeting illness communication deficits in couples facing advanced disease are warranted.

Comparing adult child and spousal caregiver burden and potential causes.

12127 Background: Adult children caring for a parent with cancer comprise a significant segment of caregivers. Demographic trends indicate this caregiving population will grow as the baby boomer generation ages. Yet little is known about adult child caregivers’ needs and experiences and how they differ from the well-studied spousal caregiver. This knowledge gap may hinder efforts to ameliorate adult children’s caregiver burden and its impact on patients. Methods: We analyzed adult child and spousal/partner caregivers’ surveys from the Cancer Care Outcomes Research and Surveillance consortium, a multi-regional population-based study of approximately 10,000 persons with newly diagnosed colorectal and lung cancer. We used t-tests and a series of multivariate regression models to assess whether adult child and spousal caregivers’ caregiving responsibilities, social/emotional burden, and financial burden (scaled 0-10) differed and examined patient and caregiver characteristics’ mediation of variation in burden. Results: Compared to spouses/partners (N=1029), adult children (N=230) completed similar levels of caregiving tasks but spent less time (14 vs. 24 hours/week; p<0.001). However, adult children experienced higher social/emotional burden (2.9 vs. 2.4; p<0.01). In baseline models controlling for patient clinical factors, caregiving characteristics, and caregiver demographics, adult children’s average social/emotional and financial burdens were statistically higher than spouses/partners. Additional adjustment for caregivers’ childcare responsibilities and employment eliminated social/emotional and financial burden disparities. Additional adjustment to the baseline model for caregiver-patient gender concordance eliminated the social/emotional burden gap. Communication quality was a large and statistically significant predictor of both burdens (p<0.001). Conclusions: Adult children spend less time caregiving than spouses/partners but experience higher caregiving burden. Adult children’s childcare and career responsibilities help explain this increased burden. Gender concordance between caregiver and patient may also contribute to social/emotional burden, adding important context to prior research indicating female caregivers experience the greatest burden. Interventions to improve communication between caregivers and patients have the potential to reduce both adult child and spouses/partners caregiver burden.[Table: see text]

The Experienced Benefits of the 17-Item Benefit Finding Scale in Chinese Colorectal Cancer Survivor and Spousal Caregiver Couples

The specific aims of the present study were twofold: (i) to examine the psychometric properties of a Chinese version of the 17-item Benefit Finding Scale (BFS-C), and (ii) to explore the experienced benefits in colorectal cancer (CRC) survivors and their spousal caregivers (SCs). A total of 286 CRC survivors and SCs participated in the investigation, which assessed participant variables of demographic characteristics and benefit finding (BF). Statistical methods applied were confirmatory factor analysis (CFA), Cronbach’s α, Pearson’s correlation, Kappa coefficient, paired t-tests, and one-way ANOVAs. CFA analysis supported a three-factor model for structure validity. All Cronbach’s α for BFS-C was greater than 0.870 in both CRC survivors and SCs. The test–retest correlations at the scale level ranged from good to excellent for CRC survivors (r = 0.752–0.922), and from moderate to good for SCs (r = 0.469–0.654). There were moderate to high correlations between CRC survivors and SCs in all of the paired BFs (all Ps < 0.001, r = 0.332–0.575). This report provided the satisfactory psychometric properties of the BFS-C in such aspects as construct validity, internal, and test–retest reliability among couples coping with CRC in China. Healthcare professionals need to treat couples as a unit and develop dyadic interventions to improve dyadic BF when supporting CRC survivors.

Marital Quality and Mental Health Among Caregiving Dyads

We examined whether the associations between marital quality and mental health were equally strong among dyads in which one spouse was providing care to a spouse (n = 155), parent (n = 61), or another adult (n = 176). Using Wave 2 of the NSHAP and actor-partner interdependence (APIM) models, we found significant differences (p=.004) among groups. Marital quality was negatively associated with one’s own depressive symptoms (b=-1.29) for husbands in the spousal caregiver group, whereas marital quality was negatively associated with one’s own depressive symptoms for wives in both the parental (b=-1.27) and other adult (b=-1.96) caregiver groups. The only partner effect was the negative association between wives’ marital quality and husbands’ depressive symptoms (b=-2.59) among dyads in which one spouse was a parental caregiver. These results point to the importance of understanding the context of caregiving when examining the protective effect of spouses’ marital quality on mental health.

The Association Between Spousal Caregiver Status and Psychological Well-Being Among Older Adults

Older adults often bear the responsibility of taking care of their spouses who have physical or cognitive impairments. Although previous studies suggested various caregiving-related negative experiences might be related to older spousal caregivers’ mental health status, the components of psychological well-being (PSW) among older spousal caregivers have not been fully explored. This study examined the association between spousal caregiver status and PSW. Data were drawn from wave 2014 of the Health and Retirement Study. The sample consisted of 3,857 adults who were above 50, and 376 of the participants provided care in activities in daily life (ADL) or instrumental activities in daily life (IADL) to their spouses/partners. Three hundred and thirty-one of them had a spouse/partner who needed care, but did not provide the care to their spouse/partner. The majority of participants, 3,150 of them, did not provide care, and their spouse/partner did not need care. Four domains of PSW were assessed: purpose of life, life satisfaction, positive affect, and negative affect. Univariate analyses and multivariable linear regression were used for analyses. Spousal caregivers and non-caregivers with need had a worse PS status, compared to non-caregivers without need. But after adjusting for socio-economic resources, health status, or social support factor, the difference in their four domains of PSW was insignificant. Older spousal caregivers’ PSW could be protected by promoting that population’s socio-economic resources and health status. Future practice needs to address caregivers’ emotional need. Future research need to examine the long-term effect of caregiving on older spousal caregivers’ PSW.

Spousal Activity Limitations and Depressive Symptoms: Benefits of Spousal Caregiving and Costs of Spousal Pain

Experiencing difficulties in performing basic activities of daily living poses significant challenges for older adults living with such limitations and also for their spouses. A growing body of evidence demonstrates cross-spousal linkages between activity limitations and depressive symptoms. However, under what conditions these linkages may be strengthened or weakened has received little attention in the literature. We addressed this gap by examining whether a) providing spousal caregiving and b) spousal pain moderated the link between spousal activity limitations and one’s own depressive symptoms. We used seven waves of longitudinal household data from the Health and Retirement Study (2004-2016; N=12,369) to estimate within-person associations between spousal activity limitations and depressive symptoms, focusing on the moderating roles of caregiving behavior and spousal pain. In particular, asymmetric fixed effects models were used to estimate the unique effects of transitioning into a spousal caregiver role in the context of spousal activity limitations. Results from multilevel models were gendered. For wives (but not for husbands), transitioning into a caregiver role to provide spousal care alleviated depressive symptoms associated with spousal activity limitations, whereas depressive symptoms were increased when husbands with activity limitations also reported frequent, moderate to severe pain. Our findings indicate that the link between spousal activity limitations and depressive symptoms is not uniform, and that the cross-spousal association may best be understood when relevant contextual factors are considered. The findings are also in line with recent studies showing that caregiving may also lead to enhanced well-being and reduced mortality risk under some circumstances.

Dyadic approach to post-stroke hospitalizations: role of caregiver and patient characteristics

Aim To study the association of caregiver factors and stroke patient factors with rehospitalizations over the first 3 months and subsequent 3–12 months post-stroke in Singapore. Methods Patients with stroke and their caregivers were recruited in the Singapore Stroke Study, a prospective yearlong cohort. While caregiver and patient variables were taken from this study, hospitalization data were extracted from the national claims database. We used Poisson modelling to perform bivariate and multivariable analysis with counts of hospitalization as the outcome. Results Two hundred and fifty-six patient with stroke and caregiver dyads (N = 512) were analysed, with patients having spouse (60%), child (29%), sibling (4%) and other (7%) as their caregivers. Among all participants, 89% of index strokes were ischemic, 57% were mild in severity and more than half (59%) of the patients had moderate or severe disability post-stroke as measured on the Modified Rankin Scale. Having social support in the form of a foreign domestic worker for general help of caregiver reduced the hospitalization rate over 3 months post-stroke by 66% (IRR: 0.342; 95% CI: 0.180, 0.651). Compared to having a spousal caregiver, those with a child caregiver had an almost three times greater rate of hospitalizations over 3–12 months post-stroke (IRR: 2.896; 95% CI: 1.399, 5.992). Higher reported caregiving burden at the 3-month point was associated with the higher subsequent rate of hospitalization. Conclusion Recommendations include the adoption of a dyadic or holistic approach to post-stroke care provision by healthcare practitioners, giving due importance to both patients with stroke and their caregivers, integrating caregivers in the healthcare system to extend the care continuum to include informal care in the community and provision of timely support for caregivers.