Family Wellness in Intellectual and Developmental Disabilities: a Balanced Approach
Purpose of Review
The current review explores the state of the literature on wellness among families living with intellectual or developmental disability (IDD).
Though wellness is often defined as a process of striving for and achieving positive health, quality of life and subjective wellbeing, much of the literature on wellness in IDD has centred on struggle and negative outcomes, including experiences of stress, crisis, and mental health problems. More recent work reveals that families living with IDD are not simply fraught with negativity, and that positive experiences, such as hope, optimism, and cohesiveness, are important aspects of wellness.
Many promising interventions have emerged to support the mental health of families, ultimately approaching wellness in a manner that contains both adaptive and maladaptive processes and outcomes. The current review provides an overview of this literature, describes evidence-based interventions in this context, and highlights areas for future research.
KeywordsIntellectual disability Autism Developmental disability Family Wellness Mental health
Intellectual and developmental disabilities
Compliance with Ethical Standards
Dr. Jonathan Weiss was supported by the Chair in Autism Spectrum Disorders Treatment and Care Research, funded by the Canadian Institutes of Health Research in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, Health Canada, Kids Brain Health Network (formerly NeuroDevNet), and the Sinneave Family Foundation. Additional funds from York University.
Conflict of Interest
Diana Tajik-Parvinchi, Andrea Maughan, and Johanna Lake declare no conflict of interests.
Human and Animal Rights and Informed Consent
This article does not contain any studies with human or animal subjects performed by any of the authors.
Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance
- 1.Corbin CB, Pangrazi RP. Toward a uniform definition of wellness: a commentary. President's Council on Physical Fitness and Sports Research Digest 2001;3(15):1–7.Google Scholar
- 4.•• Crnic KA, Neece CL, McIntyre LL, Blacher J, Baker BL. Intellectual disability and developmental risk: promoting intervention to improve child and family well-being. Child Dev. 2017; https://doi.org/10.1111/cdev.12740. In this article, Crnic and colleagues provide an excellent overview of the literature on stress in families of children with ID, including models of risk and resilience. The authors explore the complexities of these processes and relationships, and synthesize studies applying evidence-based interventions to directly or indirectly improve child and family outcomes.
- 7.• Totsika V, Hastings RP, Vagenas D. Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring. Health Soc Care Commun. 2017;25:951–61. https://doi.org/10.1111/hsc.12393. In this population-based study, Totsika and colleagues explore the wellness of informal caregivers of individuals with IDD. Results reveal the complex relationship between wellness and providing care to a person with IDD, including its effect on physical health, psychological health, and quality of life, as well as the influence of other sociodemographic variables. CrossRefGoogle Scholar
- 8.•• Hastings RP. Do children with intellectual and developmental disabilities have a negative impact on other family members? The case for rejecting a negative narrative. International review of research in developmental disabilities (Vol. 50). Elsevier Ltd. 2016; https://doi.org/10.1016/bs.irrdd.2016.05.002.This seminal chapter explores the notion that individuals with IDD have a negative impact on their families. Contrary to this assumption, many of the studies reviewed described the positive impact of having a family member with IDD. Findings also shed light on a number of important areas for future study including longitudinal studies, a focus on positive experiences, and the need to directly study and include the perceptions of all family members.
- 9.Kenny L, Hattersley C, Molins B, Buckley C, Povey C, Pellicano E. Which terms should be used to describe autism? Perspectives from the UK autism community. Autism. 2016; https://doi.org/10.1177/1362361315588200.
- 10.Sinclair J. Why I dislike “person first” language. Editorial. In: Autonomy, the Critical Journal of Interdisciplinary Autism Studies. 2013; http://www.larry-arnold.at/Autonomy/index.php/autonomy/article/view/ED2/html. Accessed: 5 Apr 2019
- 11.•• Tint A, Weiss JA. Family wellbeing of individuals with autism spectrum disorder: a scoping review. Autism. 2016; https://doi.org/10.1177/1362361315580442. This review summarizes the conceptualizations, measures, and results of the family wellbeing literature among families of children with autism. Findings highlight a number of significant methodological challenges, including how wellbeing is defined and measured, as well as several important directions for future study.
- 12.Turnbull AP, Summers JA, Lee S-H, Kyzar K. Conceptualization and measurement of family outcomes associated with families of individuals with intellectual disabilities. Ment Retard Dev Disabil Res Rev. 2007; https://doi.org/10.1002/mrdd.20174.
- 13.Totsika V, Hastings RP, Emerson E, Lancaster GA, Berridge DM. A population-based investigation of behavioural and emotional problems and maternal mental health: associations with autism spectrum disorder and intellectual disability. J Child Psychol Psychiatry. 2011; https://doi.org/10.1111/j.1469-7610.2010.02295.x.
- 14.Lloyd TJ, Hastings R. Hope as a psychological resilience factor in mothers and fathers of children with intellectual disabilities. J Intellect Disabil Res. 2009; https://doi.org/10.1111/j.1365-2788.2009.01206.x.
- 15.Ekas NV, Whitman TL, Shivers C. Religiosity, spirituality, and socioemotional functioning in mothers of children with autism spectrum disorder. J Autism Dev Disord. 2009; https://doi.org/10.1007/s10803-008-0673-4.
- 16.Ekas NV, Lickenbrock DM, Whitman TL. Optimism, social support, and well-being in mothers of children with autism spectrum disorder. J Autism Dev Disord. 2010; https://doi.org/10.1007/s10803-010-0986-y.
- 17.Greenberg JS, Seltzer MM, Krauss MW, Chou RJA, Hong J. The effect of quality of the relationship between mothers and adult children with schizophrenia, autism, or Down syndrome on maternal well-being: The mediating role of optimism. Am J Orthop. 2004; https://doi.org/10.1037/0002-94126.96.36.199.
- 18.Pit-ten Cate I. Positive gain in mothers of children with physical disabilities. Doctoral thesis. University of Southhampton: England, UK; 2003.Google Scholar
- 19.Lloyd TJ, Hastings R. Psychological variables as correlates of adjustment in mothers of children with intellectual disabilities: cross-sectional and longitudinal relationships. J Intellect Disabil Res. 2008; https://doi.org/10.1111/j.1365-2788.2007.00974.x.
- 20.Myers BJ, Mackintosh VH, Goin-Kochel RP. “My greatest joy and my greatest heartache”: parents’ own words on having a child in autism spectrum has affected their lives and their families’ lives. Res Autism Spectr Disord. 2009; https://doi.org/10.1016/j.rasd.2009.01.004.
- 21.McCubbin HI, Patterson JM. The family stress process: the double ABCX model of adjustment and adaptation. Marriage Fam Rev. 1983; https://doi.org/10.1300/J002v06n01_02.
- 22.• Pozo P, Sarriá E, Brioso A. Family quality of life and psychological well-being in parents of children with autism spectrum disorders: a double ABCX model. J Intellect Disabil Res. 2014; https://doi.org/10.1111/jir.12042. This article takes a novel approach to the stress-response model by applying the double ABCX framework to explore positive outcomes among parents of children with autism. Results emphasize the complex relationship between adaptation and stress, including the effects of child behaviour problems, parent coping strategies, and social supports.
- 23.Patterson JM. Families experiencing stress: I. The family adjustment and adaptation response model II. Applying the FAAR model to health-related issues for intervention and research. Fam Syst Med. 1988; https://doi.org/10.1037/h0089739.
- 24.Patterson JM. Integrating family resilience and family stress theory. J Marriage Fam. 2002; https://doi.org/10.1111/j.1741-3737.2002.00349.x.
- 25.Perry A. A model of stress in families of children with developmental disabilities: clinical and research applications. J Dev Disabil. 2004;11:1–16.Google Scholar
- 26.•• Minnes P, Perry A, Weiss JA. Predictors of distress and well-being in parents of young children with developmental delays and disabilities: the importance of parent perceptions. J Intellect Disabil Res. 2015; https://doi.org/10.1111/jir.12160. This study explored and compared predictors of distress and wellbeing among parents of children with IDD. Results demonstrate the powerful, positive effects of parent coping and empowerment, as well as highlight the importance of studying parent factors and positive outcomes.
- 27.Birnbrauer JS, Leach DJ. The murdoch early intervention program after 2 years. Behav Chang. 1993; https://doi.org/10.1017/S0813483900005556.
- 28.Bristol MM, Gallagher JJ, Holt KD. Maternal depressive symptoms in autism: response to psychoeducation intervention. Rehabil Psychol. 1993; https://doi.org/10.1037/h0080290.
- 29.Weiss JA, Diamond T. Stress in parents of adults with intellectual disabilities attending Special Olympics competitions. J Appl Res Intellect Disabil. 2005; https://doi.org/10.1111/j.1468-3148.2005.00234.x.
- 30.Weiss JA. Role of Special Olympics for mothers of adult athletes with intellectual disability. Am J Ment Retard. 2008; https://doi.org/10.1352/0895-8017(2008)113[241:ROSOFM]2.0.CO;2.Google Scholar
- 31.Hastings RP, Johnson E. Stress in UK families conducting intensive home-based behavioral intervention for their young child with autism. J Autism Dev Disord. 2001; https://doi.org/10.1023/A:1010799320795.
- 32.Wiggs L, Stores G. Behavioural treatment for sleep problems in children with severe intellectual disabilities and daytime challenging behaviour: effect on mothers and fathers. Br J Health Psychol. 2001; https://doi.org/10.1348/135910701169197.
- 33.Mactavish JB, Schleien SJ. Playing together growing together: parents’ perspectives on the benefits of family recreation in families that include children with a developmental disability. Ther Recreat J. 1998;32(3):207–30.Google Scholar
- 34.Maughan AL, Weiss JA. Parental outcomes following participation in cognitive behavior therapy for children with autism spectrum disorder. J Autism Dev Disord. 2017; https://doi.org/10.1007/s10803-017-3224-z.
- 35.Reaven J, Blakeley-Smith A, Beattie TL, Sullivan A, Moody EJ, Stern JA, et al. Improving transportability of a CBT intervention for anxiety in youth with ASD: results from a US-Canada collaboration. Autism. 2015; https://doi.org/10.1177/1362361313518124.
- 36.Sofronoff K, Attwood T, Hinton S. A randomised controlled trial of a CBT intervention for anxiety in children with Asperger syndrome. J Child Psychol Psychiatry. 2005; https://doi.org/10.1111/j.1469-7610.2005.00411.x.
- 37.Tonge B, Brereton A, Koimall M, Mackinnon A, King N, Rinehart N. Effects on parental mental health of an education and skills training program for parents of young children with autism: a randomized controlled trial. J Am Acad Child Adolesc Psychiatry. 2006; https://doi.org/10.1097/01.chi.0000205701.48324.26.
- 38.Matthews JM, Hudson AM. Guidelines for evaluating parent training programs. Fam Relat. 2001; https://doi.org/10.1111/j.1741-3729.2001.00077.x.
- 39.Bearss K, Burell TL, Stewart L, Scahill L. Parent training in autism spectrum disorder: what’s in a name? Clin Child Fam Psychol Rev. 2015; https://doi.org/10.1007/s10567-015-0179-5.
- 40.Tellegen CL, Sanders MR. Stepping stones triple P-positive parenting program for children with disability: a systematic review and meta-analysis. Res Dev Disabil. 2013; https://doi.org/10.1016/j.ridd.2013.01.022.
- 41.Floyd FJ, Harter KSM, Costigan CL, MacLean WE. Family problem-solving with children who have mental retardation. Am J Ment Retard. 2004; https://doi.org/10.1352/0895-8017(2004)109<507:FPWCWH>2.0.CO;2.
- 42.McIntyre LL. Parent training for young children with developmental disabilities: randomized controlled trial. Am J Ment Retard. 2008; https://doi.org/10.1352/2008.113:356-368.
- 43.Singer GH, Ethridge BL, Aldana SI. Primary and secondary effects of parenting and stress management interventions for parents of children with developmental disabilities: a meta-analysis. Ment Retard Dev Disabil Res Rev. 2007; https://doi.org/10.1002/mrdd.20175.
- 44.Webster-Stratton C. The Incredible Years: Parents and children videotape series: A parenting course (BASIC). Seattle, WA: Incredible Years; 2001.Google Scholar
- 45.Sanders MR, Mazzucchelli TG, Studman LJ. Stepping Stones Triple P: The theoretical basis and development of an evidence‐based positive parenting program for families with a child who has a disability. J Intellect Dev Disabil 2004;29(3):265–83.Google Scholar
- 46.Roberts C, Mazzucchelli T, Studman L, Sanders MR. Behavioural family intervention for children with developmental disabilities and behavioural problems. J Clin Child Adolesc Psychol. 2006; https://doi.org/10.1207/s15374424jccp3502_2.
- 47.Keen D, Couzens D, Muspratt S, Rodger S. The effects of a parent-focused intervention for children with a recent diagnosis of autism spectrum disorder on parenting stress and competence. Res Autism Spectr Disord. 2010; https://doi.org/10.1016/j.rasd.2009.09.009.
- 48.Sofronoff K, Farbotko M. The effectiveness of parent management training to increase self-efficacy in parents of children with Asperger syndrome. Autism. 2002; https://doi.org/10.1177/1362361302006003005.
- 49.Feinberg E, Augustyn M, Fitzgerald E, Sandler J, Suarez ZFC, Ferreira-Cesar S, et al. Improving maternal mental health after a child’s diagnosis of autism spectrum disorder: results from a randomized clinical trial. JAMA Pediatr. 2014; https://doi.org/10.1001/jamapediatrics.2013.3445.
- 50.Chan JB, Sigafoos J. Does respite care reduce parental stress in families with developmentally disabled children? Child Youth Care Forum. 2001; https://doi.org/10.1023/A:1014467226528.
- 51.Lunsky Y, Hastings RP, Weiss JA, Palucka AM, Hutton S, White K. Comparative effects of mindfulness and support and information group interventions for parents of adults with autism spectrum disorder and other developmental disabilities. J Autism Dev Disord. 2017; https://doi.org/10.1007/s10803-017-3099-z.
- 52.Pillay M, Alderson-Day B, Wright B, Williams C, Urwin B. Autism spectrum conditions—enhancing nurture and development (ASCEND): an evaluation of intervention support groups for parents. Clin Child Psychol Psychiatry. 2011; https://doi.org/10.1177/1359104509340945.
- 53.Weiss JA. Hardiness and social support as predictors of stress in mothers of typical children, children with autism, and children with mental retardation. Autism. 2002; https://doi.org/10.1177/1362361302006001009.
- 54.White N, Hastings RP. Social and professional support for parents of adolescents with severe intellectual disabilities. J Appl Res Intellect Disabil. 2004; https://doi.org/10.1111/j.1468-3148.2004.00197.x.
- 55.Gouin JP, Estrela C, Desmarais K, Barker ET. The impact of formal and informal support on health in the context of caregiving stress. Fam Relat. 2016; https://doi.org/10.1111/fare.12183.
- 56.Dunst CJ, Trivette CM, Hamby DW. Meta-analysis of family-centered helpgiving practices research. Dev Disabil Res Rev. 2007; https://doi.org/10.1002/mrdd.20176.
- 57.Freedman RI, Boyer NC. The power to choose: supports for families caring for individuals with developmental disabilities. Health Soc Work. 2000; https://doi.org/10.1093/hsw/25.1.59.
- 58.Sloper P, Turner S. Service needs of families of children with severe physical disability. Child Care Health Dev. 1992; https://doi.org/10.1111/j.1365-2214.1992.tb00359.x.
- 59.Wodehouse G, McGill P. Support for family carers of children and young people with developmental disabilities and challenging behaviour: what stops it being helpful? J Intellect Disabil Res. 2009; https://doi.org/10.1111/j.1365-2788.2009.01163.x.
- 60.Shilling V, Morris C, Thompson-Coon J, Ukoumunne O, Rogers M, Logan S. Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies. Dev Med Child Neurol. 2013; https://doi.org/10.1111/dmcn.12091.
- 61.Kerr SM, McIntosh JB. Coping when a child has a disability: exploring the impact of parent-to-parent support. Child Care Health Dev. 2000; https://doi.org/10.1046/j.1365-2214.2000.00149.x.
- 62.Solomon M, Pistrang N, Barker C. The benefits of mutual support groups for parents of children with disabilities. Am J Community Psychol. 2001; https://doi.org/10.1023/A:1005253514140.
- 63.Dykens EM, Fisher MH, Taylor JL, Lambert W, Miodrag N. Reducing distress in mothers of children with autism and other disabilities: a randomized trial. Pediatrics. 2014; https://doi.org/10.1542/peds.2013-3164.
- 64.Keng SL, Smoski MJ, Robins CJ. Effects of mindfulness on psychological health: a review of empirical studies. Clin Psychol Rev. 2011; https://doi.org/10.1016/j.cpr.2011.04.006.
- 65.Vøllestad J, Nielsen MB, Nielsen GH. Mindfulness-and acceptance-based interventions for anxiety disorders: a systematic review and meta-analysis. Br J Clin Psychol. 2012; https://doi.org/10.1111/j.2044-8260.2011.02024.x.
- 66.Kabat-Zinn J. Wherever you go, there you are: mindfulness meditation in everyday life. New York: Hachette Books Group; 2009.Google Scholar
- 67.Baer RA. Mindfulness training as a clinical intervention: a conceptual and empirical review. Clin Psychol Sci Pract. 2003; https://doi.org/10.1093/clipsy.bpg015.
- 68.Cachia RL, Anderson A, Moore DW. Mindfulness, stress and well-being in parents of children with autism spectrum disorder: a systematic review. J Child Fam Stud. 2016; https://doi.org/10.1007/s10826-015-0193-8.
- 69.Singh N, Lancioni GE, Winton ASW, Fisher BC, Wahler RG, Mcaleavey K, et al. Mindful parenting decreases aggression, noncompliance, and self-injury in children with autism. J Emot Behav Disord. 2006; https://doi.org/10.1177/10634266060140030401.
- 70.Blackledge JT, Hayes S. Using acceptance and commitment training in the support of parents of children diagnosed with autism. Child Fam Behav Ther. 2006; https://doi.org/10.1300/J019v28n01_01.
- 71.Reid C, Gill F, Gore N, Brady S. New ways of seeing and being: evaluating an acceptance and mindfulness group for parents of young people with intellectual disabilities who display challenging behaviour. J Intellect Disabil. 2016; https://doi.org/10.1177/1744629515584868.
- 72.Lunsky Y, Fung K, Lake J, Steel L, Bryce K. Evaluation of acceptance and commitment therapy (ACT) for mothers of children and youth with autism spectrum disorder. Mindfulness. 2017; https://doi.org/10.1007/s12671-017-0846-3.
- 73.Fung K, Lake J, Steel L, Bryce K, Lunsky Y. ACT processes in group intervention for mothers of children with autism spectrum disorder. J Autism Dev Disord. 2018; https://doi.org/10.1007/s10803-018-3525-x.
- 74.Schalock RL. The emerging disability paradigm and its implications for policy and practice. J Disabil Policy Stud. 2004; https://doi.org/10.1177/10442073040140040201.