Understanding the experience of adult daughters caring for an ageing parent, a qualitative study

Hartmann, Maja Lopez; Anthierens, Sibyl; Assche, Elisa Van; Welvaert, Joanna; Verhoeven, Véronique; Wens, Johan; Remmen, Roy

doi:10.1111/jocn.13195

Cited by 22 publications

(57 citation statements)

References 19 publications

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“…The results confirm the hypothesis of the recent qualitative study that feeling supported in providing informal care to frail older people is associated with developing caregiver burden [10]. In that study, adult daughters of community-dwelling frail older people who reported to feel sufficiently supported by friends and family tended to have a lower level of burden than women who were unsatisfied with the support they received.…”

Section: Resultssupporting

confidence: 89%

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Caring for a frail older person: the association between informal caregiver burden and being unsatisfied with support from family and friends

et al. 2019

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Background/objective although informal caregivers (ICG) find caring for a relative mainly satisfying, it can be difficult at times and it can lead to a state of subjective burden characterised by -among others- fatigue and stress. The objective of this study is to analyse the relationship between perceived social support and subjective burden in providing informal care to frail older people. Methods a descriptive cross-sectional study was conducted using data from a large nationwide longitudinal effectiveness study. Pearson correlations were calculated between the variables for support and burden. Logistic regression models were applied to determine the association between being unsatisfied with support and burden, taking into account multiple confounding variables. Results of the 13,229 frail older people included in this study, 85.9% (N = 11,363) had at least one informal caregiver. Almost 60% of the primary informal caregivers manifested subjective burden, measured with the 12-item Zarit-Burden-Interview (ZBI-12). The percentage of informal caregivers that were unsatisfied with support from family and friends was on average 11.5%. Logistic regression analysis showed that being unsatisfied with support is associated with burden (OR1.85; 95%CI1.53–2.23). These results were consistent for the three groups of impairment level of the frail older persons analysed. Conclusions the association between perceived social support and subjective caregiver burden was explored in the context of caring for frail older people. ICGs who were unsatisfied with support were more likely to experience burden. Our findings underline the importance of perceived social support in relation to caregiver burden reduction. Therefore efforts to improve perceived social support are worth evaluating.

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Section: Resultssupporting

confidence: 89%

“…Studies on social support in the context of informal caregiving show positive effects of social support on psychological outcomes like subjective burden [7,[9][10][11]. In a recent comprehensive meta-analysis, del-Pino-Casado-et-al-(2018) studied the association between social support and burden in caregivers of adults and older adults.…”

Section: Introductionmentioning

confidence: 99%

Caring for a frail older person: the association between informal caregiver burden and being unsatisfied with support from family and friends

et al. 2019

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“…We found similar interpersonal dynamics to those reported in the general population by caregivers for older relatives: homeless older adults conceptualized caregiving as an act of reciprocity for past actions, they occasionally resented it, and they recognized it as a part of their life-stage (Lopez Hartmann et al, 2016; Pope et al, 2012; Tretteteig et al, 2017). We found evidence that caregiving can both lead to homelessness among older adults and that older homeless adults used caregiving as a strategy to exit homelessness.…”

Section: Discussionsupporting

confidence: 77%

“…And I’m sick of it, I’m really gettin’ tired.” He resented always needing to look after her: “At night I be sleepin’ and she wakin’ me up, callin’, come help me, I’m sick of this.” Some participants expressed resentment and frustration when describing their current or previous roles as caregivers for their family members. Caregiving takes a physical and emotional toll: Many caregivers experience a sense of grief when becoming caregivers, as well as a lack of social support, a loss of privacy, or resentment (Lopez Hartmann et al, 2016; Pope et al, 2012; Tretteteig et al, 2017).…”

Section: Resultsmentioning

confidence: 99%

“We Really Help, Taking Care of Each Other”: Older Homeless Adults as Caregivers

Rosenwohl-Mack¹,

Kushel

Ramsey³

et al. 2019

Gerontology and Geriatric Medicine

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Objectives:Many older homeless adults maintain contact with family. We conducted a qualitative study examining the role of family caregiving for older homeless adults.Method:We conducted semi-structured qualitative interviews with a sample of 46 homeless participants who reported spending at least one night with a housed family member in the prior 6 months.Results:A total of 13 of 46 older adult participants provided caregiving. Themes included (a) the death of the care recipient led to the participant’s homelessness; (b) feeling a duty to act as caregivers; (c) providing care in exchange for housing; (d) caregivers’ ability to stay was tenuous; (e) providing care conflicted with the caregiver’s needs; and (f) resentment when family was ungrateful.Discussion:In a sample of older homeless adults in contact with family, many provided caregiving for housed family. For some, caregiving precipitated homelessness; for others, caregiving provided temporary respite from homelessness, and for others, caregiving continued during homelessness.

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“…Moreover, living alone was associated with greater perceptions of support within the closest family, and being the child of the patient was associated with less perception of such support – both these variables were selected in the final model. The former may have to do with the difficulty of managing multiple household responsibilities in addition to giving care to the patient and/or violations of expectations concerning how much support one’s household should provide [ 28 , 29 ]. The latter effect may have to do with the special circumstances and burden associated with caring for an aged parent [ 28 , 29 ].…”

Section: Discussionmentioning

confidence: 99%

Sense of support within the family: a cross-sectional study of family members in palliative home care

et al. 2020

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Background: Despite evidence that family members' support to each other can be of importance to its members, there are limited studies of factors related to family members' sense of such support during palliative care. Aim: Based on the family systems approach, we evaluated which factors were associated with family members' sense of support within their closest family in a palliative home care context and developed a model that predicts such sense of support. Design: A cross-sectional design was used. We interviewed 209 adult family members (69% of eligible) of adult patients with expected short survival receiving palliative home care. Methods: Generalised linear models were used to evaluate individual factors related to family members' sense of support within their closest family during palliative care. The Akaike Information Criterion (AIC) was applied in the model-building analyses. Results: Nineteen variables were identified that were significantly associated with the family members' sense of support within the closest family. Model building selected six variables for predicting this sense of support (decreasing Wald values): family member perceiving support from other more distant family members; feeling secure with the provided palliative home care; possibility of respite if family member needed a break; family member living alone; being a child of the patient (inverse relationship); perceiving that the patient was supported by other family members. Conclusions: Our findings support clinical application of the Family Systems Theory in the context of palliative care. The factors identified may be of value in assisting practitioners in detecting and treating family members sensing a low level of support within the closest family.

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Understanding the experience of adult daughters caring for an ageing parent, a qualitative study

Abstract: Consumer-led care and the active participation of the informal caregiver in the decision-making process for building the care plan need to become more prominent.

Cited by 22 publications

References 19 publications

Caring for a frail older person: the association between informal caregiver burden and being unsatisfied with support from family and friends

Caring for a frail older person: the association between informal caregiver burden and being unsatisfied with support from family and friends

“We Really Help, Taking Care of Each Other”: Older Homeless Adults as Caregivers

Sense of support within the family: a cross-sectional study of family members in palliative home care

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