The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life

Martz, Kim; Morse, Janice M.

doi:10.1177/1049732316649352

Cited by 24 publications

(25 citation statements)

References 55 publications

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“…When adult children had their own core families, parents had to acknowledge that they were not the primary caregivers and decision-makers and that their involvement depended on the adult child’s willingness to include their parents as well as on the relationship with the child’s family 22 23. In dyad 2, a feeling of filial responsibility influenced the adult child’s identity of being a caregiver 20 24 25. The influence of the social norm or obligation to care for a dying parent and the specific relationship with the parent was negotiated.…”

Section: Resultsmentioning

confidence: 99%

“…Societal norms linked with specific parental expectations or wishes were perceived as problematic when adult child caregivers were not able to fulfil the imposed duties. When adult children could no longer care for their parents at home, this potentially led to a fractured relationship 24 25…”

Section: Resultsmentioning

confidence: 99%

“…Mothers also experienced their home caregiving for their dying adult sons as a return to the relationship they had when their sons were children 17 21. While previous conflicts could often be resolved in the caregiving process, some cases indicated that conflicts during caregiving affected the relationship negatively 24 26…”

Section: Resultsmentioning

confidence: 99%

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Adult Child-Parent Dyadic Interactions at the End of Life: A Scoping Review

Herbst

Gawinski

Schneider

et al. 2019

BMJ Support Palliat Care

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BackgroundBeing terminally ill affects not only the life of patients but also that of their loved ones. Dyads of adult children and their parents at the end of life may face specific challenges with regard to their relationship and interactions that need to be further examined.AimThe aim was to identify, describe and summarise available evidence on adult child–parent interaction and psychosocial support needs at the end of life. Research gaps in the existing literature are disclosed and recommendations for future research are presented.DesignA type 4 scoping review according to Arksey and O’Malley’s (2005) methodological framework was conducted. The review includes studies regardless of study design and provides a descriptive account of foci of available research.Data sourcesThe PubMed, PsycINFO, CINAHL, Google Scholar and Web of Science databases were searched from inception to 16 August 2018. An additional hand search was conducted. A highly sensitive search strategy was employed to cover all potentially relevant results.ResultsThe authors screened 1832 records by title and abstract, retrieved 216 full-text articles and included 15 studies from the database search. One study was identified by way of hand search. The review identified six major themes: (1) adult child–parent relationship, (2) adult child–parent communication, (3) involvement in caregiving, (4) benefit and burden of caregiving, (5) coping strategies and (6) support and information for caregivers.ConclusionsThe scoping review accentuates the paucity of studies that address both patients’ and their parent/adult child caregivers’ relationship, interaction and psychosocial support needs.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Adult Child-Parent Dyadic Interactions at the End of Life: A Scoping Review

Herbst

Gawinski

Schneider

et al. 2019

BMJ Support Palliat Care

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Section: Literature Reviewmentioning

confidence: 99%

“…A recent publication by Martz and Morse () describe a theoretical model of the guilt experienced by caregivers. The authors again emphasise the lack of a conceptual definition of guilt (Martz & Morse, , p. 1007); however, this model situates caregiver guilt within the transitions of care necessitated by the older adult’s decline and ultimate passing. The findings of this grounded theory study include that guilt was experienced by the family member throughout the transition of care processes; yet justification of the care transition after death was used to resolve lingering guilt (Martz & Morse, ).…”

Section: Literature Reviewmentioning

confidence: 99%

Guilt experienced by caregivers to individuals with dementia: A concept analysis

Prunty

Foli

2019

Int J Older People Nursing

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Aim:To create a comprehensive understanding and definition of guilt in caregivers of individuals with dementia. Through this concept analysis, we hope to empower nurses to more accurately identify guilt in caregivers and tailor interventions to specifically reduce these symptoms of guilt.Background: Individuals with dementia are often cared for by relatives, friends and neighbours. Many caregivers express feelings of guilt, increasing the risk of depression and psychological burden. In turn, this impacts their availability to render care.Design: Concept analysis according to Walker and Avant (Strategies for theory construction in nursing. Boston, MA: Prentice Hall; 2011). Method:A literature search was completed utilising the following databases Cumulative Index to Nursing and Allied Health, PubMed, PsycINFO and Google Scholar for the years 2003-2017. Common definitions and lay usage were also considered. Results: The identified critical attributes of guilt experienced by caregivers to individuals with dementia include the following: (a) The expectation of a moral responsibility to care for the individual with dementia; (b) a negative, subjective appraisal of one's own caregiving performance, including neglecting other roles and responsibilities and self-neglect; and (c) a sense of transgression or violation of a moral standard as a caregiver to the individual with dementia. These defining attributes were then applied in three cases: model, borderline and contrary. Pertinent antecedents and consequences to the concept of guilt in caregivers to individuals with dementia were identified.Discussion: As a result of the guilt, the caregiver may experience poor mental and physical health, symptoms of anxiety and depression, and a greater sense of caregiver burden. Conclusion:A new, comprehensive conceptual definition of guilt in caregivers to individuals with dementia is described. Implications for practice: A conceptual definition of guilt in caregivers of individualswith dementia allows nurses to assess and identify caregivers at risk for, or currently experiencing, guilt and help direct caregivers to appropriate interventions and supportive services. K E Y W O R D Scaregivers, concept analysis, dementia, guilt, nursing

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Communication in dyads of adult children at the end of life with their parents and parents at the end of life with their adult children: Findings from a mixed‐methods study

et al. 2021

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Objective Patient–family member communication plays a decisive role in coping with an end‐of‐life situation and is strongly influenced by the dyadic relationship. There is a lack of research exploring and comparing the specifics of communication between (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children. The present study aimed at describing and comparing communication specifics within these two dyads. Methods As part of the research project Dy@EoL on parent–adult child interactions, this mixed‐methods study combined qualitative interviews and the Berlin Social Support Scales self‐report questionnaire. Participants in both dyads were recruited via 12 inpatient and ambulatory palliative/hospice care providers between February 2018 and September 2019. Results Participants included 65 patients (dyad 1: 19; dyad 2: 46) and 42 family members (dyad 1: 13; dyad 2: 29). Qualitative interviews revealed communication changes in the terminal illness situation and provided insight into each dyad partner's perception of openness and avoidance in the dyadic communication. The quantitative results showed that patients in both dyads provided significantly less informational support relative to family members. A strong similarity present in both dyads was the central motivation for limiting information sharing. Conclusions Individual preferences for information sharing suggest that the divergent needs of dyad partners must be carefully negotiated to ensure that patients are able to address important topics without putting too great an emotional burden on their family members. Tailored psychosocial support measures are needed to achieve this goal. The study was registered prospectively in the German Clinical Trials Register (registration N° DRKS00013206).

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The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life

Cited by 24 publications

References 55 publications

Adult Child-Parent Dyadic Interactions at the End of Life: A Scoping Review

Adult Child-Parent Dyadic Interactions at the End of Life: A Scoping Review

Guilt experienced by caregivers to individuals with dementia: A concept analysis

Communication in dyads of adult children at the end of life with their parents and parents at the end of life with their adult children: Findings from a mixed‐methods study

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