Health-related quality of life in family caregivers of autistic adults

Sophia Dückert; Sabine Bart; Petia Gewohn; Hannah König; Daniel Schöttle; Alexander Konnopka; Pascal Rahlff; Frank Erik; Kai Vogeley; Holger Schulz; Nicole David; Judith Peth

doi:10.3389/fpsyt.2023.1290407

Health-related quality of life in family caregivers of autistic adults

Front Psychiatry. 2023 Dec 18:14:1290407. doi: 10.3389/fpsyt.2023.1290407. eCollection 2023.

Authors

Sophia Dückert¹, Sabine Bart^{1

2}, Petia Gewohn^{1

3}, Hannah König⁴, Daniel Schöttle³, Alexander Konnopka⁴, Pascal Rahlff¹, Frank Erik¹, Kai Vogeley⁵, Holger Schulz¹, Nicole David¹, Judith Peth¹

Affiliations

¹ Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
² Department Health Sciences, Faculty Life Sciences, Hamburg University of Applied Sciences, Hamburg, Germany.
³ Department of Psychiatry and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
⁴ Department of Health Economics and Health Services Research, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
⁵ Department of Psychiatry, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany.

Abstract

Introduction: Family members of autistic individuals often provide support for their autistic relative throughout the lifespan which can lead to massive burden themselves. Reduced health-related Quality of Life (HRQoL) in family caregivers is assumed; however, only a handful studies on the HRQoL of family caregivers providing care to adult relatives exist as opposed to autistic children. Thus, the current study aimed to (i) investigate the current state of physical and mental HRQoL of family caregivers of autistic adults compared to the general population, and (ii) examine caregiver-related (e.g., age, subjective caregiver burden) and care recipient-related variables (e.g., symptom severity, utilization of formal services) explaining variance in the caregivers' HRQoL.

Methods: N = 149 family caregivers completed a nationwide online survey, including the Short-Form Health Survey (SF-8) in order to assess the HRQoL. T-tests were used to compare the HRQoL of family caregivers with the general population. Bivariate correlational and multiple linear regression analyses were conducted in order to identify predictors explaining variance in family caregivers' HRQoL.

Results: Family caregivers of autistic adults reported significantly lower physical (M = 46.71, SD = 8.72, Cohen's d = 0.42) and mental HRQoL (M = 40.15, SD = 11.28, Cohen's d = 1.35) compared to the general population. Multiple linear regression with the mental HRQoL as the outcome showed a significant model (F(11, 95) = 5.53, p < .001, adj. R² = .32) with increased subjective burden explaining most of the variance in mental HRQoL (ß = .32, GDW = .141, p < .001). Multiple linear regression analysis with the outcome physical HRQoL did not reveal a statistically significant model (F(11,95) = 1.09, p = .38). However, bivariate analyses also showed a positive correlation with the subjective caregiver burden (r= .20, p < .05).

Discussion: Findings highlight the need to consider HRQoL (and caregiver burden) of family caregivers of autistic adults in several healthcare settings to monitor a potential comprised health status in early stages, with the long-term goal to improve family caregivers' HRQoL.

Keywords: adults; autism spectrum disorder; caregiver burden; family caregivers; mental wellbeing; quality of life.

Grants and funding

The author(s) declare financial support was received for the research, authorship, and/or publication of this article. The study was funded by the Innovation Fund of the German Federal Joint Committee of Health Insurance Companies [Gemeinsamer Bundesausschuss, G-BA, study title “BarrierefreiASS” (01VSF19011)] and we acknowledge financial support from the Open Access Publication Fund of UKE – University Medical Center Hamburg-Eppendorf and DFG – German Research Foundation. The funding body had no role in the design of the study or in writing the manuscript, nor did they have a role in data collection, analyses or interpretation of data.