Non-kin caregivers of terminally ill people: Contributions, experiences, and needs: A protocol for a mixed-methods study

• Published in: PloS one 2024-06, Vol.19 (6), p.e0306282
• Main Authors: Heckel, Maria, Herbst, Franziska A
• Format: Article
• Language: English
• Subjects: Analysis; Biology and Life Sciences; Caregivers; Caregivers - psychology; Clinical trials; End of life; Family - psychology; Female; Humans; Illnesses; Long term health care; Male; Medical research; Medicine and Health Sciences; Medicine, Experimental; Methods; Palliative care; Palliative treatment; Population; Qualitative analysis; Questionnaires; Registers; Registration; Research and Analysis Methods; Social aspects; Social networks; Social Sciences; Social support; Socioeconomics; Statistical analysis; Study Protocol; Surveys and Questionnaires; Terminal Care - psychology; Terminally Ill - psychology; Web portals
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0306282

The role of non-kin caregivers, such as friends, neighbours, and acquaintances, in providing end-of-life care is significant but often overlooked in research and policy discussions. These caregivers provide extensive support for individuals in end-of-life care, in addition to or instead of family members. However, there is limited evidence in the literature regarding the experiences, burdens, and benefits of non-kin caregivers. The aim of this research is to examine the role and contributions of non-kin caregivers in end-of-life care. The study intends to uncover their experiences, associated challenges, benefits, and requirements for support. In order to achieve this objective, a mixed-methods approach will be employed, gathering data through structured questionnaires from approximately 150 non-kin caregivers and in-depth interviews with up to 25 participants. The questionnaires will measure the impact, burden, and benefits of caregiving. The Burden Scale for Family Caregivers, the Benefits of Being a Caregiver Scale, the Family Inventory of Needs, the Positive Mental Health Scale, a Graphic Closeness Scale, and selected items of the Eurofamcare Common Assessment Tool for socio-demographic and caregiving-related data will be used. Quantitative data will be analysed using IBM SPSS Statistics 28 for descriptive analysis and group comparison. The objective of the qualitative in-depth interviews is to obtain a comprehensive picture of the personal experiences, motivations and support needs of members of the non-kin caregivers cohort, who are as heterogeneous as possible in terms of gender, socio-economic status, and facility with the German language. The qualitative data from the interviews will be examined using MAXQDA software, adopting a grounded theory approach for analysis. This research will develop a comprehensive framework that captures the nuanced experiences of non-kin caregivers at the end of life. The framework will identify areas where support for non-kin caregivers is lacking and where further research is needed. The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00033889; date of registration: 05 April 2024). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.