Predictors of quality of life for aging family caregivers of adults with autism

ABSTRACT Family caregivers provide the predominance of care for loved ones requiring caregiving support in the United States. Quality of life and caregiver burden are impacted as caregivers age and their health declines. The purpose of this study was to determine if the domains of caregiver burden (time dependence, developmental, emotional, and impact of finances on caregiving) and informal social support were predictors of quality of life for aging parental caregivers of adult children with autism spectrum disorder (ASD). Participants (N = 320) included caregivers who were at least 50 years of age and had an adult child (18+) diagnosed with ASD. The findings indicated that three variables (developmental burden, emotional burden, and informal social support) entered the multiple linear regression analysis as significant predictors of quality of life after controlling for caregiver age and self-reported health. Social workers and other health professionals should be cognizant of health declines in caregivers that could impact their ability to provide care. They also should encourage family and friends to assist caregivers by providing emotional support and helping with everyday tasks. When visiting aging caregivers, professionals should look for signs of declining health and suggest the caregiver visit his or her primary care provider.

[1]  L. López-López,et al.  The Caregiver Burden Inventory as a sleep disturbance screening tool for parents of children with autism spectrum disorder. , 2021, Journal of pediatric nursing.

[2]  J. Weiss,et al.  Examining the relationship between social support and stress for parents of individuals with autism , 2020, Research in Autism Spectrum Disorders.

[3]  B. Hall,et al.  Caregiving burden among informal caregivers of people with disability. , 2020, British journal of health psychology.

[4]  Z. Warren,et al.  Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016 , 2020, MMWR. Surveillance Summaries.

[5]  Dylan Colbert,et al.  Brief Report: Stress and Perceived Social Support in Parents of Children with ASD , 2020, Journal of autism and developmental disorders.

[6]  Dylan Colbert,et al.  Brief Report: Stress and Perceived Social Support in Parents of Children with ASD , 2020, Journal of Autism and Developmental Disorders.

[7]  W. Awan,et al.  Caregiver Burden among Parents of Hearing Impaired and Intellectually Disabled Children in Pakistan , 2020, Iranian journal of public health.

[8]  D. Shepherd,et al.  The Types and Functions of Social Supports Used by Parents Caring for a Child With Autism Spectrum Disorder , 2020, Journal of autism and developmental disorders.

[9]  Christina N. Marsack-Topolewski,et al.  “I worry about his future!” Challenges to future planning for adult children with ASD , 2020, Journal of Family Social Work.

[10]  N. Rogge,et al.  The Economic Costs of Autism Spectrum Disorder: A Literature Review , 2019, Journal of Autism and Developmental Disorders.

[11]  Steve Taylor,et al.  How perceived support relates to child autism symptoms and care-related stress in parents caring for a child with autism , 2019, Research in Autism Spectrum Disorders.

[12]  G. Bączyk,et al.  The role of demographic and clinical variables in assessing the quality of life of outpatients with rheumatoid arthritis , 2018, Archives of medical science : AMS.

[13]  R. Beidas,et al.  Influence of Community-Level Cultural Beliefs about Autism on Families’ and Professionals’ Care for Children , 2018, Transcultural psychiatry.

[14]  Tam E Perry,et al.  Aging in Place in Every Community: Social Exclusion Experiences of Parents of Adult children With Autism Spectrum Disorder , 2018, Research on aging.

[15]  Dana Yarbrough,et al.  Lessons Learned: Providing Peer Support to Culturally Diverse Families of Children with Disabilities or Special Health Care Needs. , 2018, Social work.

[16]  F. Floyd,et al.  Lifelong Parenting of Adults With Developmental Disabilities: Growth Trends Over 20 Years in Midlife and Later Life. , 2018, American journal on intellectual and developmental disabilities.

[17]  D. Amtmann,et al.  Life impact of caregiving for severe childhood epilepsy: Results of expert panels and caregiver focus groups , 2017, Epilepsy & Behavior.

[18]  Abir K. Bekhet,et al.  Risk and Protective Factors in the Lives of Caregivers of Persons With Autism: Caregivers’ Perspectives , 2017, Perspectives in psychiatric care.

[19]  P. Samuel,et al.  Mediating Effects of Social Support on Quality of Life for Parents of Adults with Autism , 2017, Journal of autism and developmental disorders.

[20]  A. Bello,et al.  Burden of Care and Quality of Life among Caregivers of Stroke Survivors: Influence of Clinical and Demographic Variables , 2017 .

[21]  Jun Tian Wu,et al.  Caregiving and Its Resulting Effects—The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore , 2016, Cancers.

[22]  M. Hardy,et al.  The Long-Term Effects of Caregiving on Women's Health and Mortality. , 2016, Journal of marriage and the family.

[23]  H. Ouellette-Kuntz,et al.  Informal Support and Burden among Parents of Adults with Intellectual and/or Developmental Disabilities. , 2016, Journal of applied research in intellectual disabilities : JARID.

[24]  B. Curbow,et al.  Burden, quality of life, and social support in caregivers of patients undergoing radiotherapy for head and neck cancer: A pilot study , 2016, Chronic illness.

[25]  B. Chamak,et al.  Trajectories, Long-Term Outcomes and Family Experiences of 76 Adults with Autism Spectrum Disorder , 2016, Journal of autism and developmental disorders.

[26]  B. Capistrant.  Caregiving for Older Adults and the Caregivers’ Health: an Epidemiologic Review , 2016, Current Epidemiology Reports.

[27]  E. Barker,et al.  The Impact of Formal and Informal Support on Health in the Context of Caregiving Stress , 2016 .

[28]  P. De Fazio,et al.  Depressive symptoms in caregivers of patients with dementia: demographic variables and burden , 2015, Clinical interventions in aging.

[29]  S. Lindsay,et al.  Parents’ Experiences of Caring for a Child With Autism Spectrum Disorder , 2015, Qualitative health research.

[30]  C. Crespo,et al.  Parents’ Perceptions About Their Child’s Illness in Pediatric Cancer: Links with Caregiving Burden and Quality of Life , 2015 .

[31]  P. Howlin,et al.  Cognitive, language, social and behavioural outcomes in adults with autism spectrum disorders: a systematic review of longitudinal follow-up studies in adulthood. , 2014, Clinical psychology review.

[32]  J. Greenberg,et al.  Social Support and Well-being at Mid-Life Among Mothers of Adolescents and Adults with Autism Spectrum Disorders , 2012, Journal of autism and developmental disorders.

[33]  S. Koritsas,et al.  The impact of caring for adults with intellectual disability on the quality of life of parents. , 2012, Journal of intellectual disability research : JIDR.

[34]  Wang On Li,et al.  Difficulty and burden experienced by principal family caregivers of people with intellectual disabilities in Hong Kong , 2012 .

[35]  P. Bryden,et al.  The Costs of Caring for a Child with an Autism Spectrum Disorder , 2012, Issues in comprehensive pediatric nursing.

[36]  F. Floyd,et al.  Midlife and aging parents of adults with intellectual and developmental disabilities: impacts of lifelong parenting. , 2011, American journal on intellectual and developmental disabilities.

[37]  Y. Chou,et al.  Health status, social support, and quality of life among family carers of adults with profound intellectual and multiple disabilities (PIMD) in Taiwan , 2010, Journal of intellectual & developmental disability.

[38]  B. Gottlieb,et al.  Social support concepts and measures. , 2010, Journal of psychosomatic research.

[39]  K. Dillenburger,et al.  ‘How long are we able to go on?’ Issues faced by older family caregivers of adults with disabilities , 2010 .

[40]  T. Spruill.  Chronic Psychosocial Stress and Hypertension , 2010, Current hypertension reports.

[41]  Nancy Kelley-Gillespie.  An Integrated Conceptual Model of Quality of Life for Older Adults Based on a Synthesis of the Literature , 2009 .

[42]  B. J. Myers,et al.  “My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives , 2009 .

[43]  Kenneth W. Phelps,et al.  Enrichment, stress, and growth from parenting an individual with an autism spectrum disorder , 2009, Journal of intellectual & developmental disability.

[44]  S. von Kluge,et al.  Searching for acceptance: Challenges encountered while raising a child with autism , 2009, Journal of intellectual & developmental disability.

[45]  S. Ostwald.  Who Is Caring for the Caregiver?: Promoting Spousal Caregiver's Health , 2009, Family & community health.

[46]  J. Kiecolt-Glaser,et al.  Immune Dysregulation and Chronic Stress among Older Adults: A Review , 2008, Neuroimmunomodulation.

[47]  L. Lee,et al.  Children with Autism: Quality of Life and Parental Concerns , 2008, Journal of autism and developmental disorders.

[48]  Fong Chan,et al.  Confirmatory Factor Analysis of the World Health Organization Quality of Life Questionnaire—Brief Version for Individuals With Spinal Cord Injury , 2008 .

[49]  Catherine Lord,et al.  Change in Autism Symptoms and Maladaptive Behaviors in Adolescents and Adults with an Autism Spectrum Disorder , 2007, Journal of autism and developmental disorders.

[50]  W. Mak,et al.  Caregiving Perceptions of Chinese Mothers of Children with Intellectual Disability in Hong Kong , 2007 .

[51]  J. Spertus,et al.  Testing the performance of the ENRICHD Social Support Instrument in cardiac patients , 2004, Health and quality of life outcomes.

[52]  Gael Orsmond,et al.  The Symptoms of Autism Spectrum Disorders in Adolescence and Adulthood , 2003, Journal of autism and developmental disorders.

[53]  Gail Ironson,et al.  A short social support measure for patients recovering from myocardial infarction: the ENRICHD Social Support Inventory. , 2003, Journal of cardiopulmonary rehabilitation.

[54]  K. Chou,et al.  The Measurement of Caregiver Burden , 2003 .

[55]  Karen Donelan,et al.  When the caregiver needs care: the plight of vulnerable caregivers. , 2002, American journal of public health.

[56]  M. Caserta,et al.  Exploring the Caregiver Burden Inventory (CBI): Further Evidence for a Multidimensional View of Burden , 1996, International journal of aging & human development.

[57]  B. Given,et al.  The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. , 1992, Research in nursing & health.

[58]  M. Novak,et al.  Application of a multidimensional caregiver burden inventory. , 1989, The Gerontologist.

[59]  L. Zwaigenbaum,et al.  The impact of autism services on mothers' psychological wellbeing , 2017, Child: care, health and development.

[60]  W. Chaplin,et al.  The role of interpersonal sensitivity, social support, and quality of life in rural older adults , 2017, Geriatric nursing.

[61]  I. Abdollahpour,et al.  Caregiver Burden , 2014, Journal of geriatric psychiatry and neurology.

[62]  M. Srivastava,et al.  BURDEN OF CARE AND QUALITY OF LIFE (QOL) IN OPIOID AND ALCOHOL ABUSING SUBJECTS , 2013 .