Experiences of peer support amongst parents of children with neurodevelopmental disorders: A qualitative systematic review

Published:September 14, 2022DOI:


      • Parents seek peer support due to inadequacy of formal and family support systems.
      • Peer support provides emotional, appraisal, informational and instrumental support.
      • Success of peer support depends on attitude alignment and creation of safe space.
      • Cultural beliefs, inaccessibility, inferiority and unmet expectations are barriers.



      Peer support is a form of social support that can address the complexities of support needs and challenges of parenting children with Neurodevelopmental Disorders (NDDs). However, there is paucity of research on the roles and influences of peer support experienced amongst parents of neurodivergent children. This qualitative systematic review therefore aimed to consolidate and synthesize the experiences of peer support amongst parents caring for neurodivergent children.

      Eligibility criteria

      Articles were selected if they reported primary qualitative findings on the experiences of peer-support amongst parents of children diagnosed with at least one NDD as classified by DSM-5.


      Eleven articles were finalised and included in the review.


      Four themes emerged: (1) reasons for seeking peer support, (2) different roles of peer support, (3) contributing elements of successful peer support, and (4) barriers against facilitating peer support. The findings of this review revealed that peer support was a valuable social support resource that met the complex support needs of parents. It enabled parents to provide quality care for their children whilst living with quality of life for themselves.


      Peer support could be a valuable resource for parents of neurodivergent children as it could potentially enhance quality of life for parents while providing quality care for their children with complex needs.


      Healthcare providers should integrate peer support as an adjunct resource of social support to help ease caregiver burdens of parents with neurodivergent children.


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        • American Psychiatric Association
        Diagnostic and statistical manual of mental disorders.
        5th ed. 2013
        • Batchelor M.
        • Maguire S.
        • Shearn J.
        "They just get it" an exploration of father's experiences and perceptions of a support group for men caring for children with disabilities and/or developmental delay.
        Journal of Applied Research in Intellectual Disabilities. 2021; 34: 263-273
        • Berkanish P.
        • Pan S.
        • Viola A.
        • Rademaker Q.
        • Devine K.A.
        Technology-based peer support interventions for adolescents with chronic illness: A systematic review.
        Journal of Clinical Psychology in Medical Settings. 2022; : 1-32
        • Bilgin H.
        • Kucuk L.
        Raising an autistic child: Perspectives from Turkish mothers.
        Journal of Child and Adolescent Psychiatric Nursing. 2010; 23: 92-99
        • Braun V.
        • Clarke V.
        Using thematic analysis in psychology.
        Qualitative Research in Psychology. 2006; 3: 77-101
        • Bray L.
        • Carter B.
        • Sanders C.
        • Blake L.
        • Keegan K.
        Parent-to-parent peer support for parents of children with a disability: A mixed method study.
        Patient Education and Counseling. 2017; 100: 1537-1543
        • Canário A.C.
        • Byrne S.
        • Creasey N.
        • Kodyšová E.
        • Kömürcü Akik B.
        • Lewandowska-Walter A.
        • Leijten P.
        The use of information and communication technologies in family support across Europe: A narrative review.
        International Journal of Environmental Research and Public Health. 2022; 19: 1488
        • Carmona C.J.
        The role that autism parent-led support groups play in facilitating advocacy [doctoral dissertation, Walden University].
        ProQuest Dissertations Publishing, 2017
        • Clark L.
        • Canary H.E.
        • McDougle K.
        • Perkins R.
        • Tadesse R.
        • Holton A.E.
        Family sense-making after a down syndrome diagnosis.
        Qualitative Health Research. 2020; 30: 1783-1797
        • Cooper C.
        • Lovell R.
        • Husk K.
        • Booth A.
        • Garside R.
        Supplementary search methods were more effective and offered better value than bibliographic database searching: A case study from public health and environmental enhancement.
        Research Synthesis Methods. 2018; 9: 195-223
        • Craig F.
        • Operto F.F.
        • De Giacomo A.
        • Margari L.
        • Frolli A.
        • Conson M.
        • Margari F.
        Parenting stress among parents of children with neurodevelopmental disorders.
        Psychiatry Research. 2016; 242: 121-129
        • Dew A.
        • Collings S.
        • Dowse L.
        • Meltzer A.
        • Smith L.
        'I don't feel like I'm in this on my own': Peer support for mothers of children with intellectual disability and challenging behaviour.
        Journal of Intellectual Disabilities. 2019; 23: 344-358
        • Dodds R.L.
        • Singer G.H.S.
        Parent-to-parent support providers: How recruits are identified.
        Journal of Applied Research in Intellectual Disabilities. 2018; 31: 435-444
        • Dodds R.L.
        • Walch T.J.
        The glue that keeps everybody together: Peer support in mothers of young children with special health care needs.
        Child: Care, Health and Development, 2022
        • Family Action U.K.
        NDD family support volunteer.
        • Fernández-Ávalos M.I.
        • Pérez-Marfil M.N.
        • Ferrer-Cascales R.
        • Cruz-Quintana F.
        • Clement-Carbonell V.
        • Fernández-Alcántara M.
        Quality of life and concerns in parent caregivers of adult children diagnosed with intellectual disability: A qualitative study.
        International Journal of Environmental Research and Public Health. 2020; 17
        • Fletcher-Watson S.
        Transdiagnostic research and the neurodiversity paradigm: Commentary on the transdiagnostic revolution in neurodevelopmental disorders.
        Journal of Child Psychology and Psychiatry. 2022; 63: 418-420
        • Galpin J.
        • Barratt P.
        • Ashcroft E.
        • Greathead S.
        • Kenny L.
        • Pellicano E.
        ‘The dots just don’t join up’: Understanding the support needs of families of children on the autism spectrum.
        Autism. 2017; 22: 571-584
        • Giannotti M.
        • Bonatti S.M.
        • Tanaka S.
        • Kojima H.
        • de Falco S.
        Parenting stress and social style in mothers and fathers of children with autism spectrum disorder: A cross-cultural investigation in Italy and Japan.
        Brain Sciences. 2021; 11
        • Halstead E.J.
        • Griffith G.M.
        • Hastings R.P.
        Social support, coping, and positive perceptions as potential protective factors for the well-being of mothers of children with intellectual and developmental disabilities.
        International Journal of Developmental Disabilities. 2018; 64: 288-296
        • Hassanein E.E.A.
        • Adawi T.R.
        • Johnson E.S.
        Social support, resilience, and quality of life for families with children with intellectual disabilities.
        Research in Developmental Disabilities. 2021; 112103910
        • Hochman Y.
        • Shpigelman C.-N.
        • Holler R.
        • Werner S.
        “Together in a pressure cooker”: Parenting children with disabilities during the COVID-19 lockdown.
        Disability and Health Journal. 2022; 15101273
        • Hoffman C.D.
        • Sweeney D.P.
        • Hodge D.
        • Lopez-Wagner M.C.
        • Looney L.
        Parenting stress and closeness: Mothers of typically developing children and mothers of children with autism.
        Focus on Autism and Other Developmental Disabilities. 2009; 24: 178-187
        • House J.S.
        Work stress and social support.
        in: Addison-Wesley series on occupational stress. Addison-Wesley Publishing Company, 1981
        • Iscoe L.K.
        • Bordelon K.J.
        Pilot parents: Peer support for parents of handicapped children.
        Children’s Health Care. 1985; 14: 103-109
        • Jaarsma P.
        • Welin S.
        Autism as a natural human variation: Reflections on the claims of the neurodiversity movement.
        Health Care Analysis. 2012; 20: 20-30
        • Kingsnorth S.
        • Gall C.
        • Beayni S.
        • Rigby P.
        Parents as transition experts? Qualitative findings from a pilot parent-led peer support group.
        Child: Care, Health and Development. 2011; 37: 833-840
        • Klein O.
        • Walker C.
        • Aumann K.
        • Anjos K.
        • Terry J.
        Peer support groups for parent-carers of children with attention deficit hyperactivity disorder: The importance of solidarity as care.
        Disability & Society. 2019; 34: 1445-1461
        • Kuru N.
        • Piyal B.
        Perceived social support and quality of life of parents of children with autism.
        Nigerian Journal of Clinical Practice. 2018; 21: 1182-1189
        • Lindsey J.G.
        Program evaluation of a rural support group for parents of children with autism [doctoral dissertation, University of West Georgia].
        ProQuest Dissertations Publishing, 2020
        • Lockwood C.
        • Porrit K.
        • Munn Z.
        • Rittenmeyer L.
        • Salmond S.
        • Bjerrum M.
        • Stannard D.
        Systematic reviews of qualitative evidence.
        in: Joanna Briggs Institute reviewer’s manual [Internet]. The Joanna Briggs Institute, Adelaide2017
        • Lua V.Y.
        • Majeed N.M.
        • Hartanto A.
        • Leung A.K.-Y.
        Help-seeking tendencies and subjective well-being: A cross-cultural comparison of the United States and Japan.
        Social Psychology Quarterly. 2022; 85: 164-186
        • Mandell D.S.
        • Salzer M.S.
        Who joins support groups among parents of children with autism?.
        Autism. 2007; 11: 111-122
        • Mathes T.
        • Klaßen P.
        • Pieper D.
        Frequency of data extraction errors and methods to increase data extraction quality: A methodological review.
        BMC Medical Research Methodology. 2017; 17: 152
        • McCabe H.
        • McCabe K.
        Disability and family in the People’s Republic of China: Implementation, benefits, and comparison of two mutual support groups.
        Journal of Intellectual & Developmental Disability. 2013; 38: 12-22
        • McColl L.D.
        • Rideout P.E.
        • Parmar T.N.
        • Abba-Aji A.
        Peer support intervention through mobile application: An integrative literature review and future directions.
        Canadian Psychology/Psychologie Canadienne. 2014; 55: 250
        • Mead S.
        Defining peer support.
        An alternative approach, Intentional peer support2003
        • Morris-Rosendahl D.J.
        • Crocq M.A.
        Neurodevelopmental disorders-the history and future of a diagnostic concept.
        Dialogues in Clinical Neuroscience. 2020; 22: 65-72
        • Nelson N.
        Parent to parent support for parents of children with autism spectrum disorders: Perspectives of parents and program staff [doctoral dissertation, University of South Carolina].
        ProQuest Dissertations Publishing, 2015
        • Papageorgiou V.
        • Kalyva E.
        Self-reported needs and expectations of parents of children with autism spectrum disorders who participate in support groups.
        Research in Autism Spectrum Disorders. 2010; 4: 653-660
        • Peer J.W.
        • Hillman S.B.
        Stress and resilience for parents of children with intellectual and developmental disabilities: A review of key factors and recommendations for practitioners.
        Journal of Policy and Practice in Intellectual Disabilities. 2014; 11: 92-98
        • Persoff J.R.
        Poverty and early childhood developmental delay: Perspectives from Hispanic mothers [Educational Psychology 3500].
        Dissertation Abstracts International Section A: Humanities and Social Sciences. 1998; 59 (Dissertation Abstracts International): 1070
        • Programme C.A.S.
        CASP qualitative checklist.
        in: Critical appraisal skills programme. 2019 (Retrieved Dec 2021 from)
        • Ritchie H.
        Prevalence of autistic spectrum disorder, 1990 to 2017.
        Our World in Data, 2017
        • Ritchie H.
        Share of population with attention deficit/hyperactivity disorder (ADHD), 1990 to 2017.
        Our World in Data, 2017
        • Ritzema A.M.
        • Sladeczek I.E.
        Stress in parents of children with developmental disabilities over time.
        Journal on Developmental Disabilities. 2011; 17
        • Rodríguez-Madrid M.N.
        • Del Río-Lozano M.
        • Fernandez-Peña R.
        • Jiménez-Pernett J.
        • García-Mochón L.
        • Lupiañez-Castillo A.
        • García-Calvente M.D.M.
        Gender differences in social support received by informal caregivers: A personal network analysis approach.
        International Journal of Environmental Research and Public Health. 2018; 16: 91
        • Romero-Ayuso D.
        Future challenges in research in children with neurodevelopmental disorders.
        Children. 2021; 8
        • Sandelowski M.
        • Barroso J.
        Handbook for synthesizing qualitative research.
        Springer Publishing Company, Incorporated, New York2007
        • Savari K.
        • Naseri M.
        • Savari Y.
        Evaluating the role of perceived stress, social support, and resilience in predicting the quality of life among the parents of disabled children.
        International Journal of Disability, Development and Education. 2021; 1-15
        • Serchuk M.D.
        • Corrigan P.W.
        • Reed S.
        • Ohan J.L.
        Vicarious stigma and self-stigma experienced by parents of children with mental health and/or neurodevelopmental disorders.
        Community Mental Health Journal. 2021; 57: 1537-1546
        • Shilling V.
        • Bailey S.
        • Logan S.
        • Morris C.
        Peer support for parents of disabled children part 1: Perceived outcomes of a one-to-one service, a qualitative study.
        Child: Care, Health and Development. 2015; 41: 524-536
        • 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.
        Developmental Medicine and Child Neurology. 2013; 55: 602-609
        • Shorey S.
        • Chee C.Y.I.
        • Ng E.D.
        • Lau Y.
        • Dennis C.-L.
        • Chan Y.H.
        Evaluation of a technology-based peer-support intervention program for preventing postnatal depression (part 1): Randomized controlled trial.
        Journal of Medical Internet Research. 2019; 21e12410
        • Shorey S.
        • Lau L.S.T.
        • Tan J.X.
        • Ng E.D.
        • Aishworiya R.
        Families with children with neurodevelopmental disorders during COVID-19: A scoping review.
        Journal of Pediatric Psychology. 2021; 46: 514-525
        • Shorey S.
        • Ng E.D.
        • Haugan G.
        • Law E.
        The parenting experiences and needs of Asian primary caregivers of children with autism: A meta-synthesis.
        Autism. 2019; 24: 591-604
        • Shorey S.
        • Tan T.C.
        • Thilagamangai
        • Mathews J.
        • Lim S.H.
        • Shi L.
        • Chong Y.S.
        Perinatal support for couples during COVID-19: A descriptive qualitative study.
        Journal of Clinical Nursing. 2022;
        • Sohmaran C.
        • Shorey S.
        Psychological interventions in reducing stress, depression and anxiety among parents of children and adolescents with developmental disabilities: A systematic review and meta-analysis.
        Journal of Advanced Nursing. 2019; 75: 3316-3330
        • Solomon M.
        • Pistrang N.
        • Barker C.
        The benefits of mutual support groups for parents of children with disabilities.
        American Journal of Community Psychology. 2001; 29: 113-132
        • Tong A.
        • Flemming K.
        • McInnes E.
        • Oliver S.
        • Craig J.
        Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ.
        BMC Medical Research Methodology. 2012; 12: 181
        • Vermilion J.
        • Augustine E.
        • Adams H.R.
        • Vierhile A.
        • Lewin A.B.
        • Thatcher A.
        • Mink J.W.
        Tic disorders are associated with lower child and parent quality of life and worse family functioning.
        Pediatric Neurology. 2020; 105: 48-54
        • Walsh D.
        • Downe S.
        Appraising the quality of qualitative research.
        Midwifery. 2006; 22: 108-119
        • Wang S.-W.
        • Lau A.S.
        Mutual and non-mutual social support: Cultural differences in the psychological, behavioral, and biological effects of support seeking.
        Journal of Cross-Cultural Psychology. 2015; 46: 916-929
        • World Health Organisation
        Early childhood development and disability: A discussion paper.