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

Herbst, Franziska A.; Gawinski, Laura; Schneider, Nils; Stiel, Stephanie

doi:10.1136/bmjspcare-2019-001894

Cited by 10 publications

(7 citation statements)

References 39 publications

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“…In the proposed project, a greater number of interviews will be needed, because the project will apply purposeful sampling to include participants with heterogeneous characteristics, with regards to gender, age, immigrant background, employment status and urban/rural residency. Moreover, the study will consider a similar range of characteristics amongst care recipients, on the assumption that such features may reflect meaningful differences in experiences and needs [ 55 , 56 ]. For instance, the project will include patients of varying ages and kinship relations to the LD caregiver, in order to examine any effects of these variables [ 55 , 56 ].…”

Section: Methods and Designmentioning

confidence: 99%

“…Moreover, the study will consider a similar range of characteristics amongst care recipients, on the assumption that such features may reflect meaningful differences in experiences and needs [ 55 , 56 ]. For instance, the project will include patients of varying ages and kinship relations to the LD caregiver, in order to examine any effects of these variables [ 55 , 56 ]. In total, the project will enroll approximately 30–35 LD caregivers.…”

Section: Methods and Designmentioning

confidence: 99%

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Long-distance caregiving at the end of life: a protocol for an exploratory qualitative study in Germany

2022

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Background Of the approximately 4.7 million people in Germany caring for a relative, many live at a geographical distance from their loved one. The provision of remote care to a terminally ill patient is associated with specific challenges and burdens. In the German context, research is lacking on the specific experiences and needs of caregivers in end-of-life situations who are geographically distanced from their relative. Thus, the overarching goal of the proposed study is to detail the specifics of long-distance caregiving at the end of life in Germany, determining the role played by physical distance in shaping end-of-life caregiving and identifying the needs of long-distance caregivers in this situation. Methods The exploratory qualitative study will be guided by an inductive logic, drawing on one-time semi-structured interviews. To uncover the multiplicity of caregiving experiences, long-distance caregivers of both patients receiving early palliative care and patients at a very advanced stage of disease will be included. The study will be divided into five phases: (1) preparation and pretest, (2) data collection and primary analysis, (3) data analysis and interpretation, (4) advisory board workshop and (5) conclusions and recommendations. Discussion The study will aim at generating valuable insight regarding the experiences and needs of family caregivers of end-of-life patients. This is particularly relevant, given that families are becoming increasingly geographically dispersed. As this trend continues, it will challenge traditional models of family care and shed light on novel caregiving issues that will need to be addressed through social and health policy. Trial registration The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00024164; date of registration: January 25, 2021), and is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

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Section: Methods and Designmentioning

confidence: 99%

Section: Methods and Designmentioning

confidence: 99%

Long-distance caregiving at the end of life: a protocol for an exploratory qualitative study in Germany

2022

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“…A topical scoping review 10 showed that no study has examined adult child-parent relationships in the context of two specific dyads: (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children. The limited body of literature on adult child-parent caregiving relationships at the end of life indicates that, in both dyads, reciprocity and mutual support are perceived as constituent elements of the caregiving relationship.…”

Section: Introductionmentioning

confidence: 99%

‘Mums are sacred, and mums don’t die’: A mixed-methods study of adult child–parent dyadic relationships at the end of life

Herbst

Gawinski

Schneider

et al. 2021

Journal of Psychosocial Oncology

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Objectives:The aim of the present study was to report the specific challenges pertaining to the experiences and needs of (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children, regarding their relationship and relationship roles. The study sought to identify similar and differing relationship patterns between the two dyadic types. Design: This prospective observational study used an exploratory mixed-methods approach. Participants: Patients and caregivers were recruited (Feb. 2018 -Nov. 2019) via general and specialist palliative care providers in Germany. Methods: The study combined semi-structured interviews with quantitative questionnaires covering socio-demographic details, attachment style and emotional intimacy. Findings: A total of 65 patients and 42 family caregivers participated in the study. Interview data indicate that illness situation and dependencies were perceived in both dyads to represent a relationship role reversal contrary to the 'natural order'. With respect to dyad 1, adult children stressed their need for autonomy, whereas caregiving parents strived for greater intimacy in the relationship. Within dyad 2, terminally ill parents and adult children experienced a new relationship intensity. Questionnaire data showed that emotional intimacy was perceived by patients in both dyads and adult child caregivers as significantly higher in the current illness situation compared to the pre-illness situation. Conclusions: This was the first study to contribute to an understanding of the different needs of terminally ill adult children/parents and their parent/adult child caregivers, thus contributing to an understanding of the different needs of these parties, both within and between the dyadic forms. The results suggest that the dyads share similar themes, which should be integrated into general support interventions; however, some themes appear more relevant for one dyad, only.

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“…Regarding the desired levels of support in managing endof-life situations, both adult child caregivers and the parents of ill adult children seek information on the patient's illness and perceive such information as helpful, because it enables them to take some control over the situation [10][11][12][13]. The term "caregiver" is used in this article in a broad sense, encompassing family members who provide practical and/ or emotional support.…”

Section: Introductionmentioning

confidence: 99%

Consensus-based recommendations for psychosocial support measures for parents and adult children at the end of life: results of a Delphi study in Germany

Herbst

Gawinski

Schneider

et al. 2021

Support Care Cancer

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Purpose The availability of psychosocial support measures has a significant impact on the quality of life of terminally ill and dying patients and the burden experienced by their relatives. To date, no intervention has specifically focused on promoting interaction within the dyads of the following: (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children. A national Delphi study was conducted to provide appropriate recommendations for dyadic psychosocial support measures. Methods Recommendations were formulated from qualitative interview data on the experiences and wishes of patients and family caregivers within these two dyads. Experts from palliative and hospice care providers rated the relevance and feasibility of 21 recommendations on two 4-point Likert-type scales, respectively. Additional suggestions for improvement were captured via free text fields. Individual items were considered consented when ≥ 80% of participants scored 1 (strongly agree) or 2 (somewhat agree) regarding both relevance and feasibility. Results A total of 27 experts (35% response rate) completed two Delphi rounds. Following the first round, 13 recommendations were adjusted according to participants’ comments. After the second round, consensus was achieved for all 21 of the initially presented recommendations. Conclusion The Delphi-consented recommendations for parents and adult children at the end of life provide the first guidance for hands-on dyadic psychosocial support measures for parent–adult child relationships, specifically. The next step could involve the structured implementation of the recommendations, accompanied by scientific research. This study was registered on October 27, 2017, with the German Clinical Trials Register (DRKS00013206).

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

Cited by 10 publications

References 39 publications

Long-distance caregiving at the end of life: a protocol for an exploratory qualitative study in Germany

Long-distance caregiving at the end of life: a protocol for an exploratory qualitative study in Germany

‘Mums are sacred, and mums don’t die’: A mixed-methods study of adult child–parent dyadic relationships at the end of life

Consensus-based recommendations for psychosocial support measures for parents and adult children at the end of life: results of a Delphi study in Germany

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