Aged parents’ experiences during a critical illness trajectory and after the death of an adult child: A review of the literature

Humbeeck, Liesbeth Van; Piers, Ruth; Camp, Sigrid Van; Dillen, Let; Verhaeghe, Sofie; Noortgate, Nele J. Van Den

doi:10.1177/0269216313483662

Cited by 20 publications

(23 citation statements)

References 42 publications

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“…To be confronted with a serious illness and impending death may affect the physical, psychological and social well-being of both patient and close family members 2. Relatives are in a vulnerable position in which they have to negotiate different needs, such as being close to the patient and being involved in care, while handling their own suffering 3 4.…”

Section: Introductionmentioning

confidence: 99%

“…However, these family dynamics are frequently not addressed by healthcare professionals 8. Especially parents facing their adult child’s death have been overlooked in favour of other close family members, such as spouses or underage children 2. Unlike parents of minor children, parents of seriously ill adult children are often not seen as primary caregivers.…”

Section: Introductionmentioning

confidence: 99%

“…They do not have the right to be informed and the legitimacy to be involved in decision-making. They rely on their child and the child’s partner to obtain information about illness progress which can cause feelings of exclusion and lack of control 2 8. Gilbar9 indicate a significant correlation between the parent’s and adult child’s psychological distress as a result of the adult child’s cancer even when parents are not primary, but secondary caregivers.…”

Section: Introductionmentioning

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: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

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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“…Likewise, no evidence-based psychosocial interventions exist for this dyad. Retrospective case studies examining psychosocial and physical health outcomes and levels of disordered grief found parents to experience mental and physical health impairment following their child’s life-threatening diagnosis and subsequent death [ 3 ]. Examining the specifics of the interaction between adult children suffering from a life-threatening disease and their parents in comparison to the interaction of terminally ill parents and their children may provide better understanding of the distinct psychosocial needs of both dyads and may decrease the likelihood of developing negative health outcomes while increasing quality of life.…”

Section: Introductionmentioning

confidence: 99%

“…This desire may be in conflict with their adult child’s sense of autonomy and the desire of their child’s romantic partner to serve as a main caretaker [ 12 , 17 ]. Hence, parents describe a transformation of the parent role from an active and directive caregiving role to a more passive one [ 3 ]. Likewise, interactions between terminally ill parents and their children can be challenging.…”

Section: Introductionmentioning

confidence: 99%

Exploring end-of-life interaction in dyads of parents and adult children: a protocol for a mixed-methods study

et al. 2018

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BackgroundA considerable number of terminally-ill adult children are outlived by at least one parent and receive palliative care prior to their death. At the same time, adult children continue to be confronted with their parents’ terminal illnesses and end-of-life situations. The current study explores the specifics of dyadic interaction at the end of life between a) adult children suffering from a life-threatening disease and their parents, and b) terminally ill parents and their adult children.MethodsThis prospective observational study aims at filling the existing gap on adult child-parent interaction specifics at the end of life using an exploratory mixed-methods framework. The mixed-methods framework combines a qualitative face-to face interview and quantitative self-report questionnaires to study the topic at hand. The qualitative interview will focus on experiences, expectations, and wishes with regard to dyadic communication, information about illness and prognosis, expressed and perceived burden and support as well as caregiving role at the end of life. The questionnaires will cover socio-demographics, loneliness, attachment style, social support, and emotional closeness.DiscussionThe research group is currently adjusting a semi-structured interview guide and questionnaire instructions based on the results of a multiprofessional scientific advisory board meeting (Jan. 2018). In a next step, and prior to qualitative and quantitative data collection, the questionnaires will be piloted on patients and their family members in a palliative care setting. The main expected results are i) a description of the specifics of the interaction within and between both dyads, ii) the development of hypotheses and a theoretical framework on the specifics, similarities, and differences for both study groups, and iii) clinical conclusions on specific psychosocial care needs of both groups.Trial registrationThe study was registered prospectively in the Health Services Research Germany register (Versorgungsforschung Deutschland – Datenbank) (Registration N° VfD_Dy@EoL_17_003897; date of registration: November 22, 2017) and in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00013206; date of registration: October 27, 2017). The study is visible in the International Clinical Trials Registry Platform Search Portal of the World Health Organization under the German Clinical Trials Register number.

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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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Aged parents’ experiences during a critical illness trajectory and after the death of an adult child: A review of the literature

Abstract: There is a need for more in-depth research to understand the lived experience of these parents and what health-care providers can do to assist them.

Cited by 20 publications

References 42 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

Exploring end-of-life interaction in dyads of parents and adult children: a protocol for a mixed-methods study

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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