Exploring the Support and Involvement of Family Caregivers for Reablement Programs: A Qualitative Study

Abstract

Background

Reablement is a person-centered, holistic approach promoting older adults’ participation through social, leisure, and physical activities. Family caregivers are seldom involved in reablement services despite their wish to be an active member of the care team and expressing a need for more support and recognition. The voice of family caregivers is often forgotten when evaluating services such as reablement. Little is known how family caregivers can be involved and supported more effectively in reablement services, therefore the aim of our research is to investigate the perceived support and involvement of family caregivers.

Methods

As part of the TRANS-SENIOR project, we studied perceived support and involvement of family caregivers during and after geriatric rehabilitation, a setting in which principles of reablement, like goal setting and training of daily activities, are applied. In total, fourteen semi-structured interviews were conducted with family caregivers of people admitted to a geriatric rehabilitation facility. Thematic analysis was used.

Results

Results reflected four themes: (1) support for family caregivers, (2) involvement in care, (3) trusting care professionals, and (4) asking for and accepting support. Family caregivers’ experiences with support from care professionals were mainly ambivalent. While caregivers expressing a lack of support and information whilst also indicating that they do not expect to be supported by care professionals. Regarding involvement, caregivers wanted to be involved; ie express their opinion and be involved in decision-making. However, more involvement could also lead to a higher burden.

Conclusion

There is a discrepancy between the perceived support and involvement of family caregivers, their expressed needs, and their expectations of care professionals. A personalized approach is needed to create room for the family caregiver to be an active participant in the care process while also providing the right amount of support, when preferred by the caregiver.

Keywords:

• informal care
• geriatric rehabilitation
• primary care
• home care

Abbreviations

ADL, Activities of daily living; QoL, Quality of life; COREQ, Consolidated criteria for reporting qualitative research.

Data Sharing Statement

The data presented in this study are available on request from the corresponding author. The data are not publicly available due to their containing information that could compromise the privacy or consent of research participants.

Ethics Approval and Informed Consent

The study was conducted according to the guidelines of the Declaration of Helsinki, and approved by the Ethics Committee of Maastricht University, Faculty of Health, Medicine and Life Sciences (approval number FHML-REC/2022/041, approved on the 25 April, 2022). Participants voluntarily signed informed consent after they were fully informed about the purpose and procedures of the study and had the opportunity to ask additional questions or raise any concerns. The informed consent stated that participation in this study is completely voluntary and withdrawal from the study is possible at any moment, with or without providing a reason, by contacting one of the researchers. Additionally, the informed consent included publication of anonymized responses.

Acknowledgments

We would like to thank all the family caregivers who participated in the interviews. Additionally, we would like to thank MeanderGroep Zuid-Limburg and Vitala+ for their participation and help with the recruitment of family caregivers. In particular, we would like to thank Hella Senden (MeanderGroep Zuid-Limburg) and Anjo Franssen (Vitala+) for their help herein.

Author Contributions

All authors made a significant contribution to the work reported, whether that is in the conception, study design, execution, acquisition of data, analysis and interpretation, or in all these areas; took part in drafting, revising or critically reviewing the article; gave final approval of the version to be published; have agreed on the journal to which the article has been submitted; and agree to be accountable for all aspects of the work.

Disclosure

The authors declare that there are no conflicts of interest in this work.

Additional information

Funding

This work was supported by the European Union’s Horizon 2020 research and innovation program under the Marie Skłodowska-Curie grant agreement No 812656 as part of the TRANS-SENIOR project (www.trans-senior.eu).