Individual Abstract within a Delegate Designed Symposium 2025 Joint Meeting of the COSA ASM and IPOS Congress

The position of adult children as caregivers of seriously ill parents - a Danish qualitative study of adult children’s experiences (126038)

Esben Gejl 1 2 , Tine Tjørnhøj-Thomsen 3 , Kira Lauritzen 2 , Cæcilie B Myrhøj 2 4 , Mary Jarden 4 , Christoffer Johansen 2 , Annika von Heymann 2
  1. Department of Psychology, University of Copenhagen, Copenhagen, Denmark
  2. Department of Oncology, Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark
  3. National Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark
  4. Department of Haematology, Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark

Purpose

Adult children caregivers (ACCs) of seriously ill parents are the second largest group of family caregivers but remain under-researched. Due to their unique role as a child caring for a parent, ACCs may be positioned differently as caregivers than patients’ partners. This study investigates the caregiving experiences of ACCs.

Sample and setting

Sixteen adult children (>18 years) supporting a parent with cancer (n=12), heart disease (n=2), or both (n=2) were recruited during the parent’s hospitalization or ambulatory consultation at the Department of Oncology and the Heart Centre, Rigshospitalet, Copenhagen University Hospital.

Procedures

Two focus group interviews (11 participants), three individual interviews, and one dyadic interview with a sibling pair were conducted using a semi-structured interview guide, probing ACCs’ caregiving experiences and supportive needs. Interviews were audio recorded, transcribed and analysed using open and closed thematic coding, inspired by ‘Abductive Analysis’.1

Results

ACCs (aged 29-58 years) had supported their parent for three months to five years (median 5.5 months); six were bereaved, three of whom were caring for one parent after previously losing the other. ACCs described complex, often unspoken negotiations around their caregiving role and tasks, with varying degrees of recognition from parents, family members, and the health care system. ACCs’ caregiving experience was often marked by tensions among the priorities of the parent, the ACC, and other family members, as well as their varying ability to influence caregiving circumstances, such as a parent’s acceptance of professional care or willingness to share information with the ACC and other family members.

Conclusions and clinical implications

ACCs report a lack of recognition of their caregiving role and responsibilities. This may limit the ability for ACCs to navigate the caregiving situation. Health care professionals should therefore pay particular attention to demands placed on ACCs and the support available to them.

  1. Timmermans S, Tavory I. Data Analysis in Qualitative Research: Theorizing with Abductive Analysis. Chicago, IL: University of Chicago Press, 2022