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

被引:3
作者
Dueckert, Sophia [1 ]
Bart, Sabine [1 ,2 ]
Gewohn, Petia [1 ,3 ]
Koenig, Hannah [4 ]
Schoettle, Daniel [3 ]
Konnopka, Alexander [4 ]
Rahlff, Pascal [1 ]
Erik, Frank [1 ]
Vogeley, Kai [5 ]
Schulz, Holger [1 ]
David, Nicole [1 ]
Peth, Judith [1 ]
机构
[1] Univ Med Ctr Hamburg Eppendorf, Dept Med Psychol, Hamburg, Germany
[2] Hamburg Univ Appl Sci, Fac Life Sci, Dept Hlth Sci, Hamburg, Germany
[3] Univ Med Ctr Hamburg Eppendorf, Dept Psychiat & Psychotherapy, Hamburg, Germany
[4] Univ Med Ctr Hamburg Eppendorf, Dept Hlth Econ & Hlth Serv Res, Hamburg, Germany
[5] Univ Cologne, Univ Hosp Cologne, Fac Med, Dept Psychiat, Cologne, Germany
关键词
autism spectrum disorder; adults; family caregivers; quality of life; mental wellbeing; caregiver burden; SPECTRUM DISORDER; INTELLECTUAL DISABILITY; CARERQOL-INSTRUMENT; SOCIAL SUPPORT; MENTAL-HEALTH; SERVICE USE; CHILDREN; PARENTS; BURDEN; EXPERIENCES;
D O I
10.3389/fpsyt.2023.1290407
中图分类号
R749 [精神病学];
学科分类号
100205 ;
摘要
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.
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页数:12
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共 86 条
[51]   Informal Support, Health, and Burden Among Parents of Adult Children With Autism [J].
Marsack, Christina N. ;
Hopp, Faith P. .
GERONTOLOGIST, 2019, 59 (06) :1112-1121
[52]   Aging in Place in Every Community: Social Exclusion Experiences of Parents of Adult children With Autism Spectrum Disorder [J].
Marsack, Christina N. ;
Perry, Tam E. .
RESEARCH ON AGING, 2018, 40 (06) :535-557
[53]   Mediating Effects of Social Support on Quality of Life for Parents of Adults with Autism [J].
Marsack, Christina N. ;
Samuel, Preethy S. .
JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS, 2017, 47 (08) :2378-2389
[54]   Dimensions of Caregiver Burden between Compound and Noncompound Caregivers of Adults with Autism [J].
Marsack-Topolewski, Christina N. ;
Wang, Fei .
JOURNAL OF GERONTOLOGICAL SOCIAL WORK, 2022, 65 (04) :402-420
[55]   Mediating Effects of Social Support on Caregiver Burden and Quality of Life for Compound and Noncompound Caregivers [J].
Marsack-Topolewski, Christina N. .
FAMILIES IN SOCIETY-THE JOURNAL OF CONTEMPORARY SOCIAL SERVICES, 2021, 102 (02) :240-252
[56]   Relationship Between Symptom Severity and Caregiver Burden Experienced by Parents of Adults With Autism [J].
Marsack-Topolewski, Christina N. ;
Maragakis, Alexandros .
FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES, 2021, 36 (01) :57-65
[57]   Quality of Life among Compound Caregivers and Noncompound Caregivers of Adults with Autism [J].
Marsack-Topolewski, Christina N. .
JOURNAL OF GERONTOLOGICAL SOCIAL WORK, 2020, 63 (05) :379-391
[58]   Impact of Caregiver Burden on Quality of Life for Parents of Adult Children With Autism Spectrum Disorder [J].
Marsack-Topolewski, Christina N. ;
Church, Heather L. .
AJIDD-AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES, 2019, 124 (02) :145-156
[59]   Financial burden on spouses of patients suffering from schizophrenia, depression or anxiety disorder [J].
Mory, C ;
Jungbauer, J ;
Bischkopf, J ;
Angermeyer, MC .
FORTSCHRITTE DER NEUROLOGIE PSYCHIATRIE, 2002, 70 (02) :71-77
[60]   "Respect the way I need to communicate with you": Healthcare experiences of adults on the autism spectrum [J].
Nicolaidis, Christina ;
Raymaker, Dora M. ;
Ashkenazy, Elesia ;
McDonald, Katherine E. ;
Dern, Sebastian ;
Baggs, Amelia E. V. ;
Kapp, Steven K. ;
Weiner, Michael ;
Boisclair, W. Cody .
AUTISM, 2015, 19 (07) :824-831