Daughter Caregivers Research Articles

Daughters and daughters-in-law providing elderly care: a qualitative study from Karachi, Pakistan

Background and contextProviding care to the elderly is an emerging area of interest due to the increase in elderly population not only in the developed world but also in low and middle income countries. In Pakistan a country with an overall population of over 200 million, the elderly population amounts to 11.3 million. Caregiving of the elderly tends to occur within the kinship motivated by sociocultural norms as well as absence of government support facilities. While quantitative literature exists in Pakistan describing the “caregiver’s burden,” an in-depth analysis into the experiences of familial caregivers is missing.MethodsThe research used qualitative methods with the aim to explore the lived experiences of 7 daughters and 3 daughters-in-law, living in Karachi, Pakistan providing care to the elderly requiring assistance in at least two tasks of daily living.ResultsFive themes were developed inductively through the phenomenological method. All participants were Muslim and belonged to the upper economic strata of the society. Findings reveal that obligations to care are dominant in kinship circles particularly among women. Participants highlighted the importance of elderly in the Pakistani society, especially due to the religious lens that considers them as blessings. Daughter caregivers spoke about caregiving of their parents as a form of role reversal, emphasizing also upon the life-long emotional bond that served as a strong motivator. On the other hand, for daughter-in-law caregivers, motivations to care also stemmed from social expectations and kinship obligations. All participants reported multiple difficulties during the caregiving experience, despite existence of paid formal help, with respect to balancing multiple role demands and the nature of caregiving that requires constant effort. Results also illustrate that despite the desire to care for the elderly within a collectivist and patrilocal society, participants experienced multiple physical and emotional effects. However, a few also reported an increase in self-mastery and self-worth.ConclusionThis study reveals that despite increasing urbanization and more women working outside the home, providing care to the elderly appears to be centered within the kinship circle. The research makes important contributions to the ageing literature in Pakistan with relevance to other South Asian contexts.

The relationship at the heart of the experience of daughter caregivers of a parent with dementia: An interpretative phenomenological analysis.

Parents with dementia require emotional, physical, psychological and financial support from their child caregivers to continue living at home. Daughter caregivers have been shown to be more involved in self-care and household tasks and to experience higher levels of distress than son caregivers. The aim of this study was to investigate the experience of daughter caregivers who provide informal care for a parent with dementia living in their own home. Semi-structured interviews were conducted with 11 daughter caregivers of a parent with Alzheimer's disease. Interviews were analysed using Interpretative Phenomenological Analysis. Three axes emerged from the analyses: [1] the before conditions the after: the quality of the previous relationship with the parent with Alzheimer's disease is a determining factor and allows the identification of three profiles of daughter caregivers: 'the grateful', 'the resentful' and 'the ambivalent', [2] when the relationship protects against the sense of burden: the feeling of being invaded by the caregiving situation is influenced by the quality of the relationship with the parent with Alzheimer's disease, and [3] alone or almost: the support network is desired when it is absent but kept at arm's length when it is present. The results underline the importance of assessing the quality of attachment and supporting the relationship with the parent (especially when the relationship prior to the disease was difficult). Daughter caregivers should also be encouraged to delegate tasks and refocus their actions related to their values. Family mediation sessions may be planned to improve the organisation of care and set up an efficient collaboration.

FC31: Profiles of dementia caregivers according to psychosocial variables. Importance of kinship.

Objectives:Caring for a family member with dementia may have important negative psychological consequences on caregivers. The present study aims to analyze the existence of different profiles in family caregivers of people with dementia according to the levels manifested in different psychosocial variables, which are grouped into psychosocial variables (dysfunctional thoughts, familism, experiential avoidance) and resources (leisure and social support). In addition, it aims to study whether there are differences among those profiles in the levels of distress (depressive, anxious and guilt symptomatology) depending on the relationship of kinship with the cared-for person.Methods:288 family caregivers of people with dementia divided into four kinship groups (wives, husbands, sons and daughters) participated. Face-to-face interviews were conducted assessing sociodemographic variables, familism (family obligations), dysfunctional thoughts, experiential avoidance, leisure activities, perceived social support and depressive, anxious and guilt symptomatology. A hierarchical cluster analysis was performed using Ward's method and contingency tables were run between the clusters obtained and the variable of kinship and distress variables.Results:Five clusters were obtained: Low psychosocial vulnerability-High resources (mostly daughters), Low psychosocial vulnerability-Low resources (mostly daughters), Mixed (mostly sons), High psychosocial vulnerability-High resources (mostly husbands) and High psychosocial vulnerability-Low resources (mostly wives). Although with nuances, the clusters associated with lower distress are the Low psychosocial vulnerability-High resources profile and the High psychosocial vulnerability-High resources profile, and with higher distress the Low psychosocial vulnerability-Low resources profile and the Mixed profile.Conclusions:High levels of dysfunctional thoughts, familism and experiential avoidance are not always associated with greater psychological distress. In fact, profile 2 (Low psychosocial vulnerability-Low resources), in which most caregiving daughters are distributed, seems to be particularly vulnerable to presenting higher levels of emotional. Therefore, the identification of profiles of potential protection and vulnerability to psychological distress in family caregivers could help to increase the effectiveness of interventions aimed at this population.

Young Adult Caregiving Daughters and Diagnosed Mothers Navigating Breast Cancer Together: Open and Avoidant Communication and Psychosocial Outcomes.

For many diagnosed mothers and their daughters, breast cancer is a shared experience. However, they struggle to talk about cancer. This is particularly true when the daughter is in adolescence or young adulthood, as they tend to be more avoidant, which is associated with poorer biopsychosocial outcomes. When daughters are their mother's caregivers, daughters' burden and distress are heightened. Young adult caregiving daughters (YACDs) are the second most common family caregiver and encounter more distress and burden than other caregiver types. Yet, YACDs and their diagnosed mothers receive no guidance on how to talk about cancer. Thirty-nine mother/YACD pairs participated in an online survey to identify challenging topics and strategies for talking about cancer, and to explore associations between openness/avoidance and psychosocial outcomes. YACDs and mothers reported the same challenging topics (death, treatment-related issues, negative emotions, relational challenges, YACDs' disease risk) but differed on why they avoided the topic. YACDs and mothers identified the same helpful approaches to navigate conversations (openness, staying positive, third-party involvement, avoidance). Avoidance was correlated with more distress whereas openness was correlated with better psychosocial outcomes. These results provide a psychosocial map for a mother-YACD communication skills intervention, which is key to promoting healthy outcomes.

When Sons and Daughters Care for a Parent

Abstract: This study examines gender differences in offspring primary caregivers. We compared baseline data from 26 caregiving sons and 244 caregiving daughters. Caregiving sons had higher incomes, were less likely to be married, and provided care to parents less limited in their cognitive functions and instrumental activities of daily living. Daughters matched via propensity score matching to the sons regarding these variables did not differ significantly in coping and most other outcomes, though daughters did show more depressive symptoms and perceived fewer positive aspects of caregiving. This suggests that, although caregiving sons and daughters might differ in demographic variables as well as in caregiving intensity and stressors, they cope with caregiving similarly when the caregiving situation is comparable.

Medical conditions and depressive symptoms: A study of kinship profiles in dementia caregivers.

To analyze the association between diverse medical conditions and depressive symptoms in different profiles of dementia caregivers based on sex and kinship (wives, husbands, daughters, and sons). Individual interviews were conducted with 338 dementia family caregivers. Depressive symptoms were measured with the Spanish version of the Center for Epidemiologic Studies-Depression Scale. Medical conditions encompassed the following physical diseases: high cholesterol, osteoarthritis, hypertension, diabetes, cancer, and cardiovascular, brain, kidney, liver, and stomach diseases.Logistic regression analyses were carried out to identify determinants associated to thepresenceof depressive symptoms. High cholesterol was the most frequent disease among caregivers.Significant differences among groups were found in depressive symptoms: between wives (50.60%) and husbands (28.40%),(p=0.033), and between daughters (57.00%) and husbands (p=0.001). Half of the sonsreported thepresenceof depressive symptoms. In daughters, depressive symptomatology was significantly more likely whether they presented a worse reaction to disruptive behaviors, a poor assessment of global deterioration of care recipient, and less perceived health status. Furthermore, daughters were 1.94 times more likely to experience depressive symptoms if they presented medical conditions (p=0.017). Daughter caregivers that have depressive and physical diseases may be an especially vulnerable subgroup of caregivers that may not be the ideal population to provide care. Access to high-quality, evidence-based therapies focused on improving caregivers' physical health could have a positiveeffecton thepresenceof depressive symptoms, particularly in the case of daughter caregivers.

Care-giver wellbeing: exploring gender, relationship-to-care-recipient and care-giving demands in the Canadian Longitudinal Study on Aging

AbstractThe three-way intersection of gender, relationship-to-care-recipient and care-giving demands has not, to our knowledge, been examined in relation to the wellbeing of family care-givers. We explore inequalities in depressive symptoms and life satisfaction, comparing wives, husbands, daughters and sons providing very-intensive care (36+ hours/week) with those providing less care and disparities between these groups in the factors related to disadvantage. Data from the Canadian Longitudinal Study on Aging (N = 5,994) support the existence of differences between the groups. Very-intensive care-giving wives report the most depressive symptoms and lowest life satisfaction; less-intensive care-giving sons report the fewest depressive symptoms, and less-intensive care-giving daughters report the highest life satisfaction. However, group differences in life satisfaction disappear among very-intensive care-givers. Drawing on Intersectionality and Stress Process theories, data from regression analyses reveal a non-significant gender–relationship–demand interaction term, but, health, socio-economic and social support resources play a strong mediating role between care demand and wellbeing. Analyses of the eight groups separately reveal diversity in the care-giving experience. Among less-intensive care-givers, the mediating role of resources remains strong even as differences are evident. Among very-intensive care-givers, the role of resources is less and differences in wellbeing between the groups are magnified. Policy implications emphasise the imperative to personalise services to meet the varied needs of care-givers.

Experiences of Daughters Caring for a Parent With Alzheimer's Disease Living at Home.

The current study used purposeful and snowball sampling to interview 12 daughters who were care-givers to their parents with Alzheimer's disease. Data were collected through in-depth, semi-structured interviews and were analyzed using Colaizzi's descriptive phenomenological approach. Caregiving years ranged from 1 to 10 years, with a mean of 5 years. Six themes were uncovered: (a) Where Are You When I Need You?; (b) Safety First; (c) I Don't Know What to Say or How to Say It; (d) They Are Beautiful People, but They Aren't Trained; (e) Letting Go of Who They Were; and (f) It Affects Every Area of My Life. Findings suggest that caregiver daughters of parents with AD living at home are struggling and indicate a need for better support of caregivers. Implications for nursing practice, research, and education are significant and require a greater focus on the support of informal caregivers of persons with AD. [Research in Gerontological Nursing, 14(4), 191-199.].

Difference in Parent-Child Care Experience by Demographic Characteristics: Focusing on Stress, Needs, and Meaning

OBJECTIVE: In super aging society, unpaid caregivers play important roles. Therefore, they should be supported to realize the lives they want. However, it is unclear what caregivers’ particular needs are under different conditions. This study aimed to explore the difference in forms of stress and needs of caregivers by demographic characteristics. METHOD: Adult children who were caring for or had cared for their parents at home under the Japanese long-term care insurance system (n=653) completed the three open-ended questions concerning caregiving stress, unmet needs, and meaning, combined with a demographic survey. Data were analyzed using text mining approaches such as correspondence analysis and co-occurrence network analysis, which illustrated differences in description according to demographic variables. RESULT: 1) Caregivers of fathers felt stressed when rebuked by care-recipients, whereas daughter caregivers of mothers felt stressed in coping with care-recipient dementia and complaint, and balancing caregiving with parenting. 2) Caregivers in economic difficulty needed instrumental and financial support, whereas others needed flexible support and accessible consultation services. 3) Caregivers living with care-recipients found meaning in experience and repaying parents for raising them, whereas caregivers living away found meaning in improved parent-child relationships and images of care-recipients. Caregivers of persons with dementia found meanings in sharing time of tranquility with care-recipients. CONCLUSION: The study revealed differences in caregiving experience by care dyads, economic situation, living arrangement, and dementia etc. These results suggest that family caregivers should be provided with services to help find meanings in work and reduce stress levels, according to caregiving conditions.

Women and Men Presenting to a Rural and Remote Memory Clinic in Saskatchewan, Canada Show Similar Cognitive Findings for Dementia.

The course of dementia may differ between men and women. Men, for example, are more likely to exhibit aggression. It is unclear if sex differences are present at initial presentation. The present study examines sex differences among patients at initial referral to a memory clinic. Three hundred seventy-five (159 males, 216 females) patients referred to the University of Saskatchewan's Rural and Remote Memory Clinic participated. Data were collected from patients and caregivers at initial assessment. Cognitive, functional, and demographic information were compared between males and females. Males and females presented to the clinic at similar ages. Females were more likely to have a son or daughter caregiver and to live alone. Males were more likely to be currently working. No statistically significant differences were found for cognitive or functional assessment scores. Within this rural and remote sample, there was equivalence between male and female level of cognitive decline, function and neuropsychiatric symptoms at initial referral. Both sexes were of similar ages at the time of initial presentation. These findings may provide reassurance to patients and their family members as it does not appear that patients of one sex were referred later than the other.

Complexity of care: Stressors and strengths among low-income mother-daughter dyads

ABSTRACTResearch on informal care for older adults tends to consider middle- and upper-class individuals. Consequently, less is known about caregiving among low-income families. We present findings from an exploratory qualitative study of low-income African American mothers (n = 5) and their caregiving daughters (n = 5). Guided by a feminist framework, we consider how individual, familial, and societal factors contribute to the intersectional complexities of caregiving. Despite the unavailability of formal resources, we found the 10 women positive in their outlook. Furthermore, this study contributes to a growing body of research that identifies both negative and positive aspects of caregiving among an underrepresented population.

Perceived burden among spouse, adult child, and parent caregivers.

To identify what factors are associated with the caregiver burden of spouse caregivers, adult child caregivers, and parent caregivers. Caregivers often feel stressed and perceive caregiving as a burden. The caregiver burden has been little studied from the perspective of the personal relationship between caregiver and care recipient. Cross-sectional study. A random sample of 4,000 caregivers in Finland was drawn in 2014 and those who remained either spouse, adult child, or parent caregivers at data collection were included in the analysis (N=1,062). Data collection included recipients' characteristics. Caregivers' perceived burden was measured using the Caregivers of Older People in Europe index. General linear models were used to explain perceived caregiver burden. Care recipients' low level of cognitive function was associated with greater perceived burden. Higher quality of support was associated with lower perceived burden among female and male spouse caregivers, daughter caregivers, and mother caregivers. Low cognitive function explained 3-6% and high quality of support 2-5% of the total variation in the burden explained by the models, which ranged between 45-55%. Because cognitive challenges of care recipient are associated with greater perceived burden and high quality of support with lower burden among most of the caregiver groups, high-quality tailored nursing interventions will be needed especially for the caregivers of the most frail care recipients.

P.064 Sex differences in patients referred to a rural and remote memory clinic

Background: Dementia is more prevalent in women. Sex differences exist as the disease progresses (e.g. males are more likely to become aggressive). In many medical illnesses (e.g. cardiac disease), there are differences in presentation between men and women. The current study explores sex differences at the patients’ initial presentation to the Rural and Remote Memory Clinic (RRMC). Methods: Patients were referred to the RRMC in Saskatoon, Saskatchewan. Cognitive and demographic data were collected. Questionnaires included cognitive (e.g. Mini-Mental Status Examination) and daily living (e.g. Instrumental Activities of Daily Living) assessments. Results: Three hundred and seventy-five (159 male, 216 female) patients participated. Of these patients, 146 (49 male, 97 female) were diagnosed with Alzheimer’s disease. Males and females presented to the clinic at similar ages. Females were more likely to have a son or daughter caregiver and to live alone. Males were more likely to be currently working and to be a former smoker. No statistically significant differences were found for cognitive assessment scores. Conclusions: Analysis of the initial presentation of patients to the RRMC revealed females and males had similar presentation in measures of cognitive impairment. This may be reassuring for patients and their families knowing their family member, regardless of sex, is receiving equivalent referral to receive care.

Family cohesion: A study on caregiving daughters of parents with Alzheimer’s disease

In this regard, investigating these aspects might facilitate the evaluation of family relations and the development of interventions that create, keep, restore, or enhance the skills families need to better deal with the disease. Based on this information, the objective of this chapter is to present and discuss investigative research on family cohesion and hierarchy from the perspective of caregiver daughters of elderly with Alzheimer’s in four situations: before the disease, currently, in conflict, and ideally. 32 women caretakers and their respective parents (6 fathers and 26 mothers) diagnosed with possible or probable AD participated in the survey. The instruments used were the Mini-Mental State Examination (MMSE) in an Open Interview with a Semi-Structured Script, and the Family System Test (FAST). We observed that before onset of the disease, the caregivers generally perceived themselves to have more hierarchy than their siblings, χ2(2) = 4.92, p < .10. The current situation showed a greater number of caregivers in higher hierarchical positions than their siblings (72%), and a lesser number of siblings than expected in higher hierarchical positions than the caregivers, χ2(2) = 18.32, p < .001. The ideal representation showed that most caregivers did not want themselves or any of their siblings to have more power than the other (66.7%), χ2(2) = 14.89, p < .001. Comparing conflict representations to ideal representations showed that family members demonstrated lower cohesion in conflict situations than in ideal situations, z = -2.86, p < .01.

Compassion Fatigue in Adult Daughter Caregivers of a Parent with Dementia

Adult daughters face distinct challenges caring for parents with dementia and may experience compassion fatigue: the combination of helplessness, hopelessness, an inability to be empathic, and a sense of isolation resulting from prolonged exposure to perceived suffering. Prior research on compassion fatigue has focused on professional healthcare providers and has overlooked filial caregivers. This study attempts to identify and explore risk factors for compassion fatigue in adult daughter caregivers and to substantiate further study of compassion fatigue in family caregivers. We used content analysis of baseline interviews with 12 adult daughter caregivers of a parent with dementia who participated in a randomized trial of homecare training. Four themes were identified in adult daughter caregiver interviews: (a) uncertainty; (b) doubt; (c) attachment; and (d) strain. Findings indicated adult daughter caregivers are at risk for compassion fatigue, supporting the need for a larger study exploring compassion fatigue in this population.

Adult daughters providing post-stroke care to a parent: a qualitative study of the impact that role overload has on lifestyle, participation and family relationships

Objective: To qualitatively explore daughters’ experiences with and response to holding multiple roles while providing post-stroke care to a parent. Design: Qualitative study using a descriptive approach. Semi-structured interviewing was used. Interviews were recorded, transcribed and analyzed to develop themes. Setting: General community of a metropolitan city. Participants: Twenty-three adult daughters caring for a community-dwelling parent who had suffered a stroke. Interventions: Not applicable. Main outcome measures: Not applicable. Results: Role overload is a salient issue for daughter caregivers. This overload is best captured by the analogy of “juggling” multiple role demands and responsibilities. Two key themes suggest that role overload resulting from parent care affects daughters’: 1) valued relationships (e.g. challenges develop in their relationship with children and partner); and 2) ability to participate in valued activities (e.g. reduced involvement in leisure activities and restricted employment). Conclusions: Future support efforts should help daughters manage the caregiving role in light of other responsibilities. This can mitigate overload-related strain in valued relationships and decreased participation in valued activities, thereby contributing to better health and well-being for daughter caregivers.

Daughters providing poststroke care: perspectives on the parent-child relationship and well-being.

Stroke is a leading cause of disability and dependence on the family, specifically daughter caregivers. The quality of the parent-child relationship can influence the experiences and well-being of daughters. Little is known about this in the context of stroke caregiving. We aimed to explore daughters' perceptions of changes in the relationship with their parent and how these changes contribute to their well-being. We used a qualitative descriptive design. Twenty-three daughters completed one in-depth interview that was transcribed, reviewed, coded, and categorized to generate themes. The parent-child relationship was central to each of the three themes: It (a) led daughters to take on the caregiving role, (b) changed as a result of caregiving, and (c) contributed to daughters' physical and emotional health. Targeted counseling that addresses changes in the parent-child relationship can help mitigate losses in communication and intimacy between daughters and parents. Insight into temporal relationship changes is needed.

Informal care and caregiver's health.

This study aims to measure the causal effect of informal caregiving on the health and health care use of women who are caregivers, using instrumental variables. We use data from South Korea, where daughters and daughters-in-law are the prevalent source of caregivers for frail elderly parents and parents-in-law. A key insight of our instrumental variable approach is that having a parent-in-law with functional limitations increases the probability of providing informal care to that parent-in-law, but a parent-in-law's functional limitation does not directly affect the daughter-in-law's health. We compare results for the daughter-in-law and daughter samples to check the assumption of the excludability of the instruments for the daughter sample. Our results show that providing informal care has significant adverse effects along multiple dimensions of health for daughter-in-law and daughter caregivers in South Korea.

Mediators of the effect of the psycho-educational intervention on the psychological well-being of caregiving daughters and daughter in-laws of stroke survivors

Background: The objective of this study was to determine whether the randomly assigned intervention is associated with a change in the mediators including threat appraisal, coping behaviors, confidence in knowledge, and preparedness which is in turn accompanied by changes in the caregivers’ psychological well-being. Methods: A total of 96 caregiving daughters and daughter in-laws of stroke survivors participated in the study in which 49 cases were randomly assigned to the intervention and 47 to the control group. Data was collected before, immediately after and 12 weeks following interventions. Results: The results of mixed ANOVA revealed a statistically significant difference in psychological well-being score between intervention and control groups. Our findings from the multiple mediator analyses supported the mediating effect for only two of the five hypothesized mediators. The intervention affected psychological well-being indirectly through changes in threat appraisal and perceived preparedness. Multiple mediator models accounted for 34.3% of the variance in the psychological well-being change. Conclusion: The results of this study show the importance of mediators’ evaluation in interventional studies of stroke survivor caregivers.

Family conflict from the perspective of adult child caregivers

This study examines how care recipient impairment and family conflict affect adult children caregivers’ stress. A particular focus is on how the gender of the adult child moderates the relationships among care recipient impairment, family conflict, and caregiver stress. Based on a nationally representative sample of 861 adult child caregivers, structural equation modeling indicates that family conflict mediates the relationship between care recipient impairment and caregiver stress. In addition, gender plays a key moderator role; that is, the relationship between care recipient impairment and family conflict is stronger for caregiving sons than for caregiving daughters. Overall, however, adult sons and daughters experience the stress process similarly.