Relational Deprivation Research Articles

Pre-onset relational investments and dementia caregiver wellbeing: Comparing theorizing from the investment model and the theory of resilience and relational load

ABSTRACT Dementia alters relationships between family caregivers and their relatives living with dementia. Drawing from the theory of resilience and relational load (TRRL) and the investment model, this study assesses the influence of dementia caregivers’ pre-onset relational investments in these relationships (relationship maintenance and communal orientation) on their individual and relational wellbeing (depression, personal growth, love/closeness). Two mediating mechanisms (relational deprivation, ongoing relationship maintenance) were examined, and disease severity was tested as a moderator. Using surveys from 454 dementia family caregivers (majority adult child and spousal caregivers), analysis revealed that pre-onset relational investments generally support caregiver wellbeing through ongoing relationship maintenance as a mediator. Disease severity moderated these associations. Findings are discussed in light of TRRL and investment model theorizing.

Relational Deprivation and Resilience Across Borders

Following a pattern of racially-motivated social violence enacted during the time of slavery and critiqued by many Black feminist thinkers, this paper argues that numerous U.S. immigration policies today inflict unjust and deeply damaging forms of relational deprivation on immigrant workers and their care communities. One form this relational deprivation takes is that of impinging on the ability to directly provide care to, or otherwise express care for, those whom one loves. When we recognize that caring for those that one loves is both a precious form of freedom and a genuine need, we establish the foundation for understanding how the shackling of this cherished ability can result in egregious injustice and harm. In highlighting this form of relational deprivation and others, the paper thus makes a case for why immigration policies must change.

MO898: Comparison of Quality of Life and Bio-Psychosocial Burden in Family Caregivers Between Dialysis Patients and Kidney Transplant Recipients

Abstract BACKGROUND AND AIMS Chronic kidney disease (CKD) is considered as a high-stress disease for patients, because of severe morbidity, chronicity and its life-long treatment often requiring dedicated family care. Caregivers’ burden is considered a multidimensional bio-psychosocial reaction of great importance both for caregivers’ and CKD patients’ Quality of Life (QoL). Kidney transplantation (KT) has been shown to improve patient's QoL, however the effect of KT on family's burden in comparison with dialysis has not been sufficiently studied. Aim of this cross-sectional, multicentre, observational study was to estimate and compare the QoL and burden between family caregivers of dialysis patients versus KT recipients (KTRs). METHOD We included 138 caregivers of dialysis patients and 33 of KTRs. We assessed caregivers’ QoL with SF-36 questionnaire and bio-psychosocial burden with Zarit Burden Interview scale (ZBI). RESULTS Mean age of caregivers did not differ between the two groups (56y dialysis versus 58y KTRs). The majority of KTRs (57.6%) and dialysis patients’ caregivers (68.1%) were women of whom 73% and 52% were spouses, respectively. Educational level and financial status did not differ between the two groups of caregivers. The results of the SF-36 and ZBI are comparatively presented in the Table 1. Dialysis patients’ caregivers had worse QoL compared with KTRs caregivers. There was a statistically significant difference in general health, bodily pain and social functioning role among KTRs versus dialysis caregivers. Dialysis caregivers showed a significantly higher burden in 3 sub-dimensions of ZBI (personal strain, role strain, relational deprivation) compared with KTRs caregivers. Moreover, the burden of KTRs caregivers found to be inverse correlated with educational level (P = 0.01), while in dialysis caregivers, older age, female gender and low income were directly associated with burden (P < 0.001, P = 0.019 and P = 0.005, respectively). CONCLUSION The caregivers of dialysis patients showed worse QoL and significantly higher burden compared with KTRs caregivers. Further studies of larger size will probably shed light to the potential benefits of ΚΤ in patients’ caregivers and families. Currently, implementation of programs for psychological support in high burdened caregivers of kidney disease patients’ could be of help.

Understanding Social Exclusion of the Low-caste Muslims in Kashmir

This paper attempts to establish the prevalence of the caste system among Muslims in Kashmir. This has been achieved by pointing to aspects like endogamy, ghettoization as well as hereditary passing of ‘menial’ jobs among the ‘low caste’ groups. Further, these findings have been substantiated by the fieldwork done over three months. The essential premise borrowed here to understand caste in Kashmir is that of social exclusion, which the low-caste groups face. Social exclusion, in the context of this study, can be understood as a process that places certain caste groups in a disadvantaged position. This especially stems from being kept out of the larger social networks, in addition to not being able to access employment and education. It is also rooted in the overlapping layers of socio-cultural and economic deprivation. Poverty, in terms of material depravity, is starkly reinforced by such a socio-cultural identity of being a low-caste person employed in a ‘menial’ job. The objective of this paper, as such, is to theorize social exclusion faced by low-caste groups in Kashmir through a capability framework. This paper also investigates the importance of relational deprivation which leads to the capability failure and hence poverty, as well as the dynamics of caste-class interaction in the similar framework of social exclusion.

The Role of Religious Coping in Caregiving Stress

Studies explaining how stressors and religious coping affect caregivers’ depression have been rarely conducted in the Indonesian context. Therefore, this study discusses stress process theory by examining the role of religious coping as a moderating variable between relational deprivation and loss of self on depression. In a quantitative study of 50 caregivers of persons with schizophrenia in Indonesia, this study analyzed the moderating variables using multiple regression. The results showed that higher relational deprivation will lead to increased depression, but religious coping mechanisms can reduce the effect of relational deprivation on depression (buffering effect). Religious coping can also minimize the effect of loss of self to depression. Subjective stressors and religious coping offer new theoretical insights and must be considered when studying caregiving stress. In this regard, mental health services aiming to enhance caregivers’ welfare need to be provided by the state and community.

Dementia Caregiving and Cognition: An Extension of the Stress Process Model

As cases of Alzheimer’s disease and related dementias (ADRD) continue to rise, informal caregivers are critical resources in providing dementia care, yet caregiving is associated with high levels of burden, stress, anxiety and depression. Caregiving can be a prolonged and stressful experience, and impaired cognitive functioning in caregivers could impact their own health and quality of life and compromise the quality of care provided to their care-recipient. Thus, the purpose of the current study is to use the Stress Process Model as a guiding theoretical framework to identify whether primary stressors (e.g., care recipient functional status, cognitive problems) or secondary stressors (e.g., loss of self, economic conflict) predict performance across seven domains of cognition in 50 primary ADRD caregivers. Hierarchical regression analyses were used to examine which primary and secondary stressors emerge as predictors of cognitive performance. Results indicated that primary stressors (e.g., problematic dementia behaviors and relational deprivation) significantly predicted working memory performance and secondary stressors (e.g., economic strain, loss of self) significantly predicted implicit memory performance. Additionally, higher levels of caregiver burden predicted worse performance on executive functioning and implicit memory measures. Overall, the findings of this study indicate that the stress associated with caregiving may have adverse effects beyond psychosocial outcomes, and findings can be used to inform policies and practices with regard to caregiver health and well-being.

EXPLORING THE CAREGIVING CAREER: VARIATIONS IN SPOUSES’ CONCERNS

Caregiver identity theory posits that family caregivers’ relationship identity changes across five phases of the caregiving career. As the career unfolds, the relationship identity changes from one comprised primarily of the spousal role (phase 1) to one comprised equally by spousal and caregiver roles (phase 3), and one comprised primarily by the caregiver role (phase 5). This study investigated whether spouses/partners’ most important concerns about caregiving varied across the caregiving career. Participants included 135 caregivers of spouses/partners with a chronic condition. They were asked to identify their most important concern related to caregiving, along with demographic questions. Thematic analyses of their concerns yielded eight themes focused on the caregiver or dyad. Caregiver focused themes included burden, providing best possible care, worry about ability to care, physical health, financial concerns, and needing/managing help. Dyadic themes were communication and relational deprivation. Differences across the caregiving career were found in terms of ranked proportion of concerns. The most common concerns in phase 1 were equally distributed across communication, needing/managing help, and providing best possible care. Phase 2’s most common concern was providing the best possible care. Phase 3’s most common concern was worry about ability to care. The most common concerns in phase 4 were equally distributed across burden and worry about ability to care. Phase 5’s most common concern was burden. Findings reveal there are differential concerns across the caregiving career that align with a greater focus on relational factors earlier in the career and caregiver burden later in the career.

A brief measure of predeath grief in dementia caregivers: the Caregiver Grief Questionnaire.

The study of predeath grief is hampered by measures that are often lengthy and not clearly differentiated from other caregiving outcomes, most notably burden. We aimed to validate a new 11-item Caregiver Grief Questionnaire (CGQ) assessing two dimensions of predeath grief, namely relational deprivation and emotional pain. Cross-sectional survey. Community and psychogeriatric clinics. 173 Alzheimer (AD) caregivers who cared for relatives with different degrees of severity (63 mild, 60 moderate, and 50 severe). Besides the CGQ, measures of caregiver burden and depressive symptoms, and care-recipients' neuropsychiatric symptoms and functional impairment were assessed. Confirmatory factor analysis supported the hypothesized 2-factor over the 1-factor model, and both subscales were only moderately correlated with burden. Two-week test-retest reliabilities were excellent. Caregivers for mild AD reported less grief than those caring for more severe relatives. Z tests revealed significantly different correlational patterns for the two dimensions, with emotional pain more related to global burden and depressive symptoms, and relational deprivation more related to care-recipients' functional impairment. Both dimensions were mildly correlated with neuropsychiatric symptoms (especially disruptive behaviors and psychotic symptoms) of the care-recipient. Results supported the reliability and validity of the two-dimensional measure of predeath grief. As a brief measure, it can be readily added to research instruments to facilitate study of this important phenomenon along with other caregiving outcomes.

“The Heartbreak of Social Rejection”: Young Children’s Expressions about How They Experience Rejection from Peers in ECEC

ABSTRACT Playful interactions with peers have a significant role in children’s lives, and experiencing belongingness and acceptance through interpersonal relationships is a fundamental presupposition for children’s health and well-being. Peer rejections appear to be an inevitable component of peer interactions. Sometimes, rejection involves relational devaluation and deprivation of a sense of belonging. This article highlights the voice of the children and intends to contribute more knowledge about how peer rejections are experienced by the children in early childhood education and care (ECEC) institutions. The data were collected through video-recorded interviews with children between 3.5 and 6 years old and analysed within a phenomenological hermeneutical approach to examine the structures of their experiences. The findings reveal that the peer rejections are experienced as stressful and emotionally painful events, which affect the children’s emotional state and impact their social self-perception. This study emphasizes the children as relationally dependent subjects, and the findings highlight the importance of creating within ECECs an inclusive and nurturing social environment that prevents peer rejections.

Accepting Austerity or Grexit? Predicting Acceptance of Crisis Solution Strategies from People’s image of the Greece-Eu Relationship, their own Position and Norms of Justice

In recent years Greece has faced a terrible economic crisis that became social, political and humanitarian and challenged its relationship with the European Union. In this paper, through a survey research with an opportunity sample of Greek people (N = 739) of different ages and professions, we investigate whether participants’ image of the relationship between Greece and the EU relates to their agreement with a) harsh austerity and decrease of national sovereignty, b) decrease of the public sector and c) Grexit measures. We hypothesized and observed that this relationship is mediated by beliefs about norms of justice and beliefs of individual mobility and relative position. In particular, a positive relationship between Greece and EU predicts agreement with harsh austerity and decrease of the public sector through justice beliefs of equity whereas the relationship with Grexit is not mediated by beliefs about norms of justice. In addition, perceiving the GR-EU relationship as a relationship of domination predicts the different measures through feelings of personal or relational relative position. Legitimation of a relationship of domination and acceptance of harsh measures is observed the less people feel relatively deprived personally in comparison to their past position or in comparison to others, whereas this relationship with Grexit is observed the more relative relational deprivation is felt. These results highlight that perception of asymmetric relationships and status (at an individual or group level) between the national group and the EU and distribution of resources should be taken into account when discussing measures to combat the crisis.

From sanctuaries to prefigurative social change: Creating health-enabling spaces in East London community gardens

How do community gardens impact the psycho-social well-being of marginalized groups in urban settings? And to what extent are they examples of prefigurative social change, understood as the development of social relations that prefigure a more equal and empowering social world? We explore these issues through qualitative research with four community garden groups in East London, thematically analysing interviews and group discussions with 28 gardeners, Photovoice with 12 gardeners producing 250 photographs, and 40 hours of participant observation. We offer two unique insights: a novel understanding of how participation in community gardens affects well-being through creating ‘health-enabling social spaces’ (Campbell, C., & Cornish, F. (2010). Towards a “fourth generation” of approaches to HIV/AIDS management: Creating contexts for effective community mobilization. AIDS Care, 22(Suppl. 2), 1569-1579); and a discussion of how creating these spaces is an act of prefigurative social change. Our findings suggest that in East London, participation in community gardens is not based on a common political intention or self-conscious motive to prefigure a new society, but instead on the shared practice of gardening. This results in unintended benefits that often address participants’ personal adversities in ways that contribute to the material, relational and symbolic deprivation of their daily lives – opening up new possibilities for being, seeing and doing. In this sense, community gardens in East London offer an alternative to traditional notions of prefigurative social action that are predicated on strategic intention. We argue for an understanding of prefiguration that better accounts for what participants themselves would like to achieve in their own lives, rather than in relation to externally imposed notions of what counts as political change.

Diving into the Being of Resiliency from Addiction: A Nondual Approach

Addiction is a coping strategy for existence and is supported culturally, which leads to the inability to authentically connect. From the relational deprivation, individuals have been conditioned to function from false representations, which have lead to deeper holes of emptiness that are struggling to be filled through addictive tendencies. The authors utilize a nondual approach to demonstrate at the heart of addiction is the desire for specialness, ego inflation, and the narcissistic condition. Through a psychotherapy case study, the authors show how utilizing an Almaas nondual transformation of narcissism approach, clients can move from addiction and narcissism into authentic being and thus develop resiliency to addiction and narcissism from the past and freedom, resiliency, and self-growth for the future.

A typology of care-giving across neurodegenerative diseases presenting with dementia

ABSTRACTThe purpose of this study is to develop and extend our understanding of dementia care-giving by introducing a typology of informal care-giving across four different diseases. Care-giving factors were examined with respect to specific dementia presentation in mild cognitive impairment, Alzheimer's disease, dementia with Lewy bodies and Parkinson's disease-associated dementia. Informal care-giving literature in the four diseases was systematically searched to identify specific disease symptoms and resultant care-giving strains and outcomes. Key concepts were extracted and grouped thematically. The first classification, ‘role-shift’, reflects care-giving where cognitive deterioration results in changing roles, uncertainty and relational deprivation among married partners. The second classification, ‘consumed by care-giving’, refers to those caring for persons with dementia-motor decline that greatly increases worry and isolation. Finally, in the ‘service use’ classification, formal support is needed to help care-givers cope with daily responsibilities and behaviour changes. In each case, the dementia presentation uniquely impacts care-giver strains. A major conclusion is that the same support to all care-givers under the umbrella term ‘dementia’ is unwarranted; the development of targeted support is required.

Eldercare in the transnational setting: insights from Bangladeshi transnational families in the United States.

Little is known about the emotional impact of caregiving for elderly parents on migrant child in the transnational setting. To address this gap in the literature, this study examines the stressors, mediators, and outcomes of eldercare in the transnational context. Data were collected from 21 Bangladeshi immigrant men and women living in the United States who had living parents in Bangladesh over 60years old. Despite the geographic distance, the migrants provide care to their parents such as emotional support, financial assistance, and arranging for care. While the health status of the care recipients contributed to primary objective stressors, none of the transnational caregivers' narratives reflected the presence of any subjective stressors such as role overload, role captivity, and relational deprivation. Distance and depending on others for hands-on caregiving resulted in feelings of loss of control over the caregiving process. Caregivers experienced a range of emotions from guilt, excessive worrying, and distress over the unpredictability and uncertainty of their circumstances. Kin networks, communicative technologies, and a cultural norm of filial piety contributed to mediating stress. The findings underscore the importance of supportive institutional policies such as visa and travel policies, employment leave, and counseling services for caregivers who provide care for their elderly parents transnationally.

Predicting longitudinal patterns of psychological distress in older husband caregivers: Further analysis of existing data

Further analysis of existing data from a previous longitudinal study of older husband caregivers sought to determine whether primary objective and subjective stressors drawn from Pearlin's model of caregiving could predict three patterns of psychological distress observed in the sample over 1 year: (a) stable high (n = 115), (b) stable low (n = 44), and (c) rising (n = 46). Results of discriminant function analyses show that subjective stressors (level of role overload, role captivity and relational deprivation) at baseline, distinguish the stable low group of husbands from the stable-high. The results suggest that there is considerable stability over time. Many husband caregivers report high-psychological distress and need help, whereas there is a need of preventive interventions to keep psychological distress low. Implications for singular interventions that target specific factors according to group membership are discussed.

Depressed mood in informal caregivers of individuals with mild cognitive impairment.

This study estimates the prevalence of depressed mood in caregivers of individuals with mild cognitive impairment (MCI) and assesses whether demographics, stressors, intrapsychic strain, and gain are associated with depressed mood. A secondary analysis of baseline data from the Alzheimer's Disease Cooperative Study MCI trial was conducted using a cross-sectional, correlational design. Descriptive statistics to estimate the prevalence of caregiver depressed mood and univariate and block-wise logistic regression analyses were used. The prevalence of depressed mood in 769 caregivers was 24.6% (95% confidence interval, 21.5-27.7). The odds of being depressed were significantly higher in younger, nonspousal caregivers with less education, who cared for MCI patients with lower activities of daily living functioning, and who perceived greater relational deprivation, higher levels of self-loss, and personal gain. Controlling for relevant variables, relational deprivation and caregiver education continued to be significantly associated with depressed mood. Relational deprivation may be important for future interventions.

Stress among the family caregivers of liver transplant recipients

Family members of liver transplant patients continue caregiving activities for a lengthy period after transplantation. To assess the effect of stress-related factors on psychological distress and perceived health of family caregivers of liver transplant recipients. Twenty-four caregivers of liver transplant recipients treated at a liver unit serving the northern part of Israel. Pearlin's caregiving stress questionnaire was administered to assess the subscales of patients' symptoms as perceived by caregivers, caregiving activities, perceived overload, relational deprivation, personal gain, and social support; also, a depression questionnaire and a perceived caregivers' health questionnaire were administered to participants. Caregivers experienced considerable caregiving overload. Women reported performing more caregiving activities, higher perceived overload, and higher level of depression than men. Increasing passage of time since transplantation, higher perceived overload, higher sense of relational deprivation, and lower sense of personal gain were significantly associated with higher level of depression and worse perceived health. Perceived support and level of depression were not significantly associated with perceived health. Caregiving stress endures after transplantation. Professional intervention is needed to improve caregivers' quality of life and, consequently, that of transplant recipients as well.

Stress among the Family Caregivers of Liver Transplant Recipients

Family members of liver transplant patients continue caregiving activities for a lengthy period after transplantation. To assess the effect of stress-related factors on psychological distress and perceived health of family caregivers of liver transplant recipients. Twenty-four caregivers of liver transplant recipients treated at a liver unit serving the northern part of Israel. Pearlin's caregiving stress questionnaire was administered to assess the subscales of patients' symptoms as perceived by caregivers, caregiving activities, perceived overload, relational deprivation, personal gain, and social support; also, a depression questionnaire and a perceived caregivers' health questionnaire were administered to participants. Caregivers experienced considerable caregiving overload. Women reported performing more caregiving activities, higher perceived overload, and higher level of depression than men. Increasing passage of time since transplantation, higher perceived overload, higher sense of relational deprivation, and lower sense of personal gain were significantly associated with higher level of depression and worse perceived health. Perceived support and level of depression were not significantly associated with perceived health. Caregiving stress endures after transplantation. Professional intervention is needed to improve caregivers' quality of life and, consequently, that of transplant recipients as well.

Does couple identity mediate the stress experienced by caregiving spouses?

For caregivers, the stress process is multifaceted, involving primary stressors, which stem directly from the needs of the patient, and secondary stressors, which relate to the subjective burden of caregiving. According to stress proliferation theories, both primary and secondary stressors can exacerbate caregiver distress. However, individuals vary considerably in their reactions to caregiving. This study explored whether seeing oneself as part of a couple and incorporating one's relationship into one's self-concept (couple identity) alleviates the negative effects of primary and secondary stressors on caregiver mental health. The sample comprised 92 healthy spouses who had been caregiving for a partner with a chronic physical illness for an average of 5.9 years. Results showed that couple identity partially mediated the effects of negative primary (i.e., relational deprivation and overload) and secondary (i.e., loss of self and captivity) role stressors, and fully mediated the effects of positive secondary role stressors (i.e., caregiver self-esteem and competence) on caregiver mental health. Viewing the relationship as an extension of oneself, or high levels of couple identity, may thus help to minimize the negative effects and maximize the positive effects of the caregiving experience on caregiver mental health.

Older Husbands as Caregivers

The purpose of this study, based on Pearlin et al.'s model, was to determine the factors associated with the health of older husband caregivers and with their intention to end home caregiving for their wives. The results showed subjective stressors to be associated with outcomes. Role overload was linked to psychological distress and to lower self-perceived health, whereas role captivity was associated with psychological distress and the intention to end home caregiving. The likelihood of ceasing home caregiving increased when caregivers reported high relational deprivation. A high percentage of the variance in psychological distress was explained (51%). The quality of prior husband-wife relationships, the frequency of disruptive behaviors, family conflicts, and self-efficacy were associated with this variable. Selfefficacy had a mediating effect between subjective stressors and psychological distress, whereas the number of services received had a moderating effect on the intention to end home caregiving among husbands with high role captivity. This study provides avenues for interventions sensitive to male caregivers.