Care for thy neighbour: A study of neighbours’ caregiving intentions by likelihood of reciprocity and previous caregiving experience

Given in the increase in share of older people as well as the decrease in family size, it can be expected that more and more informal care will fall onto the shoulders of non-kin, such as neighbors. Currently, neighbors rarely provide informal care and knowledge on their characteristics and motivations is limited. Our study advances our knowledge of neighbor caregivers by examining the impact of anticipated reciprocity and previous (negative) caregiving experience. Combining retrospective and factorial survey data on caregiving, we show that people have higher intentions to provide care to a neighbor when likelihood of reciprocity is high (compared to low), and that prior caregiving experience is irrelevant for intentions to provide care to neighbors. However, our study suggests that the impact of reciprocity may depend on previous caregiving experience; having actual caregiving experience overrides expectations regarding the general norm of reciprocity, but only if the previous caregiver did not experience caregiver burden. With these results, the study indicates that neighbors can form potential safety net for those who cannot rely on their family members for care.

Burden and benefits of caregiving experiences can coexist. The objective of this research is to describe and compare the predictors of the two intertwined caregiving experiences. This study examines how the variations in caregiving experiences can be explained in terms of both positive and negative aspects of caregiving, respectively by demographic characteristics and care related contexts. The Caregiving, Aging, and Financial Experiences study is a national survey intended to examine social conditions and well-being among a representative sample of 4,010 Canadians between age 65 and 85. Within the sample, 1,641 informal caregivers are the focus of the current analysis. Scales of positive and negative caregiving experiences are employed. Findings based on principal axis factor analysis shows that there is clear separate factor loadings between the positive and negative caregiving experiences. Subsequent seemingly unrelated regression analysis shows that there are similarities as well as differences in predictors between the two caregiving experiences. Lastly, the variance explained differs markedly between the two measures, with over 26% of the variance in negative caregiving accounted for by demographic and caregiving factors, but less than 4% of the variance in positive caregiving. This study demonstrates that positive aspects of caregiving is not simply the flip-side of negative caregiving. Standard predictors do not sufficiently explain positive caregiving as well as negative caregiving. Consequently, greater attention to factors that account for positive aspects of caregiving is warranted for an inclusive understanding of caregiving experiences.

The experience of caregiving in severe mental illness is a valuable concept for research and clinical practice as it can provide access to the idiosyncratic assessment of negative and positive dimensions of informal caregiving, thus allowing the design of interventions focused on reducing risk factors and promoting protective factors. This study was aimed at testing explanatory models of negative and positive experiences of caregiving considering the role of the caregiver’s perceptions of difficulties, satisfaction, and coping. A convenience sample of 159 informal caregivers of patients with schizophrenia was used in this study. Different variables were considered: (1) perception of difficulties (Caregiver’s Assessment of Difficulties Index); (2) perception of satisfaction (Caregiver’s Assessment of Satisfaction Index); (3) perception of coping (Caregiver’s Assessment of Managing Index); and (4) the experience of caregiving (Experience of Caregiving Inventory). Using structural equation modeling, the results revealed the following: (1) the perception of difficulties and of satisfaction coexist; (2) the negative experiences of caregiving are predominantly explained by the perception of difficulties and of coping with stress; and (3) the positive experiences of caregiving are mainly explained by the perception of sources of intrapersonal satisfaction, while the perception of coping does not have robust predictive value.

Lockdowns, while limiting COVID-19 transmission, can affect care provision by family caregivers and their caregiving experience. We assessed, among 1094 family caregivers aged 50-79 years in Singapore, the (1) perceived effect of nationwide lockdown on their care provision, (2) correlates of different perceptions, and (3) association of the perceptions with negative and positive caregiving experiences. Caregivers reported whether their care provision became harder, easier, or remained the same during versus before the lockdown. Multinomial logistic regression assessed the association of caregiver, care-recipient, and caregiving-context characteristics with their perceptions. Linear regression models examined the association of their perceptions with subsequent negative and positive caregiving experiences. Care provision became harder for 36%, easier for 18% and remained the same for 46% caregivers. Care provision becoming harder (versus same) was more likely for caregivers who were male, Chinese, in worse health, caring for care-recipients with functional limitations, without caregiving support from cohabiting family before the lockdown, and with caregiving support from non-cohabiting family before the lockdown. Care provision becoming easier (versus same) was less likely among caregivers who were of higher age, unemployed, socially isolated and whose care-recipients had functional limitations. Caregivers for whom care provision became harder were worse off in negative caregiving experiences. A nationwide lockdown did not make care provision harder for all caregivers. However, those for whom it did had greater negative caregiving experiences. Heterogeneity of the effect of lockdowns and offering flexibility to non-cohabiting family who support caregiving should be considerations when implementing such disruptions.

This study examines the predictors of burdens and benefits of informal caregiving to caregivers by examining how demographic characteristics and care contexts simultaneously predict separate scales of positive and negative caregiving experiences. The Caregiving, Aging, and Financial Experiences study is a national survey which examines a representative sample of 4010 Canadians between the ages of 65 and 85, including 1641 informal caregivers that are the focus of the current analysis. Seemingly unrelated regression analyses show that there are similarities as well as differences in predictors between the two caregiving experiences. More frequent involvement in caregiving is associated with greater negative caregiving experiences but those are not significant predictors for less positive caregiving experiences. This study demonstrates that there are some overlaps of determinants of the two caregiving experiences, and a few of them are distinct. Further studies should warrant to identify additional, unobserved factors explaining variance in positive caregiving experience.

Introduction: Lockdowns, while limiting COVID-19 transmission, can affect provision of care by informal caregivers and their caregiving experience. We assessed, among informal caregivers in Singapore, (a) the perceived impact of a 2-month (April to May 2020) nationwide lockdown on their care provision, (b) correlates of different perceptions of the impact of the lockdown on care provision, and (c) association of different perceptions of the impact with negative and positive experiences of caregiving. Methods: In the August 2020 wave of the Singapore Life Panel (SLP; nationally representative, longitudinal monthly survey of Singapore citizens and permanent residents aged 50–70 years at baseline), 1,094 participants identified as informal caregivers reported whether their care provision became easier, remained the same, or became harder during the lockdown, compared to before the lockdown. We used multinomial logistic regression to assess the association of caregiver, care recipient, and caregiving context characteristics with their perceptions. Linear regression models examined the association of their perceptions with negative and positive experience domains of the modified Caregiver Reaction Assessment. Results: Just over one-third (36.1%) of the informal caregivers reported that their care provision became harder during the lockdown compared to before the lockdown. However, nearly one-fifth (18.0%) said that it became easier, and the rest (45.9%) said that it remained the same. Care provision was more likely to be perceived as having become harder among caregivers who were male, of Chinese ethnicity, in worse health, whose care recipients had functional limitations, who did not have caregiving support from cohabiting family members before the lockdown, and who had caregiving support from non-cohabiting family members before the lockdown. The perception that care provision became easier was less likely among caregivers who were of higher age, were unemployed, were socially isolated, and whose care recipients had functional limitations. Caregivers who perceived that care provision became harder during the lockdown were worse-off in negative experiences of caregiving. Conclusion: A nationwide lockdown did not make care provision harder for all informal caregivers. However, informal caregivers for whom it did were more likely to have greater negative experiences of caregiving. The heterogeneity of the impact of lockdowns and the possibility of offering flexibility to non-cohabiting family members who support caregiving should be important considerations when planning for such disruptions.

A thematic synthesis of qualitative literature was conducted. AMED, Medline, SPORTDiscus, CINAHL, and PubMed were electronically searched from inception until September of 2015. Studies were eligible if they included qualitative literature reporting on firsthand experience of informal caregivers of patients with MND, were published in English, and contained verbatim quotations. Critical appraisal was undertaken using a 13-item consolidated criteria for reporting qualitative studies (COREQ) checklist. A total of 10 studies met the inclusion criteria, with 148 (50 male) current or previous informal caregivers of pwMND identified. Critical appraisal demonstrated that study design and reflexivity were underreported. The synthesis derived three themes: (1) loss of control, (2) inability to choose, and (3) isolation. The synthesis highlighted the factors that contribute to both positive and negative caregiving experiences. Through these experiences, such suggestions for service provision as improving communication with healthcare professionals and having a single point of contact emerged. However, the outcome of such suggestions on the experience of caregivers is beyond the scope of our synthesis, so that further research is required.

Using data from the 2004 wave of the National Long-Term Care Survey, we examined how negative and positive caregiving experiences differ by caregivers' gender and relationship to care recipients. We further considered how their caregiving experiences are affected by caregivers' demographic characteristics, care recipients' problem behavior and dependency, caregivers' involvement, reciprocal help from care recipients, and social support available for caregivers. We found that female and adult-child caregivers, in general, reported having had more negative experiences than male and spouse caregivers, respectively. Wife caregivers were least likely to report positive experiences. We also found different risk factors for negative and positive caregiving experiences, and these factors varied depending on caregivers' gender and relationship to the care recipient. The findings underscore the heterogeneity of caregiving experiences. To sustain informal care, state and local agencies need to tailor services to wife, husband, daughter, and son caregivers' unique needs.

Objective: To compare the psychometric properties of the Caregiver Strain Index Expanded with those of the original Caregiver Strain Index among partners of stroke patients. Design and subjects: Cross-sectional validation study among 173 caregivers of stroke patients six months post-stroke. Main measures: Outcome measure: Caregiver Strain Index Expanded. Reference measures: Hospital Anxiety and Depression Scale, two questions on life satisfaction, Barthel Index and Montreal Cognitive Assessment. Additionally, National Institutes of Health Stroke Scale. Results: Neither the Caregiver Strain Index Expanded nor the original Caregiver Strain Index showed floor or ceiling effects. The sum score of the positive items showed a ceiling effect and was skewed to the right (2.20). Principal component analysis revealed no clear underlying item clustering. Alpha values of the Caregiver Strain Index Expanded and the original Caregiver Strain Index were good (0.82 and 0.83), but the alpha value of the positive subscale of the Caregiver Strain Index Expanded was too low (0.51). Convergent validity was confirmed for the Caregiver Strain Index Expanded, the original Caregiver Strain Index and the positive subscale. The Caregiver Strain Index Expanded and the original Caregiver Strain Index showed nearly identical correlations with the reference measures. Negative caregiving experiences were more strongly related to partners’ mood and life satisfaction than positive caregiving experiences. In the regression analyses, the positive subscale showed little added value in predicting partners’ mood and life satisfaction. Conclusion: The addition of five positively phrased items does not improve the psychometric properties of the Caregiver Strain Index.

Caregivers of schizophrenia play a major role in community-based care of patients. Recent studies have shed light on positive aspects of caregiving, in contrast to caregiving burden. There is limited research in this area in India. To assess the "experience of caregiving" and "coping strategies" in caregivers of patients with schizophrenia, and to study associations, if any, between them. 102 caregivers of out- and in-patients with schizophrenia were assessed on the "Experience of Caregiving Inventory" (ECI) and "COPE Inventory" (COPE). Sociodemographic profiles of patients and caregivers, and clinical histories of patients were also collected. Maximum perceived negative experience of caregiving was "effects on family" while "stigma" was the lowest. Other domains had moderate scores. Among positive experiences, "good aspects of relationship" scored higher than "positive personal experiences." A wide range of adaptive and maladaptive coping strategies were used. Statistically significant positive correlations emerged between positive experiences of caregiving and adaptive coping strategies, and between negative experiences of caregiving and maladaptive coping strategies. The association between experiences of caregiving and coping strategies suggests that caregiving experiences are influenced not only by the illness but also by the coping methods employed. Helping caregivers cope better might improve caregiving experience.

Caregiving Experiences as Mediators Between Caregiving Stressors and Anticipatory Grief in Severe Dementia: Findings From Longitudinal Path Analysis

Preliminary Analysis of Aspects of Caregiving among Spousal Caregivers and Adult Child Caregivers for Persons with Dementia

Bipolar affective disorder and schizophrenia are disabling illnesses and place a considerable degree of burden on the caregivers. Many studies from India have measured the burden of care in schizophrenia and some studies have measured the burden experienced by the caregivers of bipolar affective disorder. Few studies have compared this variable in these disorders. Experience of caregiving is a broader concept that takes into consideration both the negative and positive appraisal of the caregiving. However, no study from India has compared the experience of caregiving in bipolar affective disorder and schizophrenia. To study the experience of caregiving in a group of caregivers of bipolar patients and compare the same with caregivers of patients with schizophrenia. Seventy patients with a diagnosis of bipolar affective disorder and 70 with a diagnosis of schizophrenia were selected for the present study. Patients were assessed on the Hamilton Depression Rating Scale, the Young Mania Rating Scale and the Positive and Negative Syndrome Scale depending upon their diagnosis. They were also assessed on the Global Assessment of Functioning (GAF) scale. Caregivers of the patients were assessed on the General Health Questionnaire (GHQ) and the Experience of Caregiving Inventory (ECI). The maximum ECI score was seen in the domain of handling 'difficult behaviour' in both the groups. Compared to caregivers of patients with bipolar affective disorder, caregivers of patients with schizophrenia had overall more positive and negative appraisal of caregiving experience while caring for their ill relatives. The difference reached significant levels for all domains but for the domains of 'effects on family', 'need for back-up' and 'good aspect of relationship'. There were significant differences too for the total positive personal experience sub-score. There was a significant positive correlation between the negative and positive caregiving experience score for both schizophrenia and bipolar groups. The caregivers of both bipolar affective disorder and schizophrenia appraise the caregiving negatively, while at the same time appraising some positive aspects of it. Caregivers of schizophrenia patients appraise caregiving more negatively than those of bipolar affective disorder patients.

Caring for a person with schizophrenia entails considerable effort. The caregiving experience while caring for a person with schizophrenia has been described as both stressful and enriching. The literature on changes in caregiving experience with time has been fairly limited. The present analysis looks at the change in the caregiving experience of caregivers of patients with schizophrenia. This study had a sample of 50 caregivers of patients with schizophrenia who were followed up after a period of 6 to 10 months. Caregiving experience, knowledge of the mental illness, family functioning, coping, social support, psychological distress, quality of life, and spiritual, religious, and personal beliefs were assessed at the two time points. Among the negative caregiving experiences, caregivers' needfor back-upand patient dependency reduced significantly at follow-up as compared to baseline, though total negative or positive experiences of caregiving did not show a significant difference. Knowledge about mental illness did not significantly increase at follow-up, though issues related to poor communication and affective involvement in family functioning reduced over the period of time. Coping and social support remained largely the same, while psychological distress was reduced. All domains of quality of life improved over the follow-up period, while the hope, optimism, and inner peace aspects of spiritual, religious, and personal beliefs improved with time. Some aspects of caregiving experiences may change with time. As caregivers become more adjusted to caregiving roles, their distress may reduce, and their quality of life may improve.

Objectives: To analyze the experience of family caregivers in the home care for people with pressure injuries (PI). Methods: Qualitative and descriptive research carried out with family members who received support from the home care service and who were the main informal caregivers of people with PI from stage 3 onwards. A sociodemographic questionnaire and semi-structured interview were applied with the following stimulus for narration: tell me about your experience in the home care to your family member with PI? Data were analyzed according to Bardin's content analysis. Results: Four categories emerged: 1) Performance of family members in PI care; 2) Support of the home care service to the family and patients with PI; 3) Overload of family caregivers; 4) Satisfaction in repaying the care received. Conclusion: This study showed the importance of support to home care service and the difficulties experienced by family members in caring for people with PI, including financial and physical overload; lack of preparation of the caregiver to deal with PI; family conflicts; and the centralization of care responsibility, predominantly performed by women. However, many see in care the opportunity to return the love received, despite all physical and mental fatigue.