Health-related quality of life in family caregivers of autistic adults
IntroductionFamily 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 fa...
| Main Authors: | , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2023-12-01
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| Series: | Frontiers in Psychiatry |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fpsyt.2023.1290407/full |
| _version_ | 1797387679199920128 |
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| author | Sophia Dückert Sabine Bart Sabine Bart Petia Gewohn Petia Gewohn Hannah König Daniel Schöttle Alexander Konnopka Pascal Rahlff Frank Erik Kai Vogeley Holger Schulz Nicole David Judith Peth |
| author_facet | Sophia Dückert Sabine Bart Sabine Bart Petia Gewohn Petia Gewohn Hannah König Daniel Schöttle Alexander Konnopka Pascal Rahlff Frank Erik Kai Vogeley Holger Schulz Nicole David Judith Peth |
| author_sort | Sophia Dückert |
| collection | DOAJ |
| description | IntroductionFamily 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.MethodsN = 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.ResultsFamily 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).DiscussionFindings 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. |
| first_indexed | 2024-03-08T22:29:32Z |
| format | Article |
| id | doaj.art-948c10fd564b4af89627613d367c69b8 |
| institution | Directory Open Access Journal |
| issn | 1664-0640 |
| language | English |
| last_indexed | 2024-03-08T22:29:32Z |
| publishDate | 2023-12-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Psychiatry |
| spelling | doaj.art-948c10fd564b4af89627613d367c69b82023-12-18T07:37:18ZengFrontiers Media S.A.Frontiers in Psychiatry1664-06402023-12-011410.3389/fpsyt.2023.12904071290407Health-related quality of life in family caregivers of autistic adultsSophia Dückert0Sabine Bart1Sabine Bart2Petia Gewohn3Petia Gewohn4Hannah König5Daniel Schöttle6Alexander Konnopka7Pascal Rahlff8Frank Erik9Kai Vogeley10Holger Schulz11Nicole David12Judith Peth13Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, GermanyDepartment of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, GermanyDepartment Health Sciences, Faculty Life Sciences, Hamburg University of Applied Sciences, Hamburg, GermanyDepartment of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, GermanyDepartment of Psychiatry and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, GermanyDepartment of Health Economics and Health Services Research, University Medical Center Hamburg-Eppendorf, Hamburg, GermanyDepartment of Psychiatry and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, GermanyDepartment of Health Economics and Health Services Research, University Medical Center Hamburg-Eppendorf, Hamburg, GermanyDepartment of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, GermanyDepartment of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, GermanyDepartment of Psychiatry, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, GermanyDepartment of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, GermanyDepartment of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, GermanyDepartment of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, GermanyIntroductionFamily 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.MethodsN = 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.ResultsFamily 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).DiscussionFindings 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.https://www.frontiersin.org/articles/10.3389/fpsyt.2023.1290407/fullautism spectrum disorderadultsfamily caregiversquality of lifemental wellbeingcaregiver burden |
| spellingShingle | Sophia Dückert Sabine Bart Sabine Bart Petia Gewohn Petia Gewohn Hannah König Daniel Schöttle Alexander Konnopka Pascal Rahlff Frank Erik Kai Vogeley Holger Schulz Nicole David Judith Peth Health-related quality of life in family caregivers of autistic adults Frontiers in Psychiatry autism spectrum disorder adults family caregivers quality of life mental wellbeing caregiver burden |
| title | Health-related quality of life in family caregivers of autistic adults |
| title_full | Health-related quality of life in family caregivers of autistic adults |
| title_fullStr | Health-related quality of life in family caregivers of autistic adults |
| title_full_unstemmed | Health-related quality of life in family caregivers of autistic adults |
| title_short | Health-related quality of life in family caregivers of autistic adults |
| title_sort | health related quality of life in family caregivers of autistic adults |
| topic | autism spectrum disorder adults family caregivers quality of life mental wellbeing caregiver burden |
| url | https://www.frontiersin.org/articles/10.3389/fpsyt.2023.1290407/full |
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