‘They Got It’:  How professionals can support the emotional wellbeing of parents of a child with a learning disability, or who are autistic.

Joanna Griffin

doi:10.24377/EJQRP.article3185

Authors

Joanna Griffin Metanoia Author

DOI:

https://doi.org/10.24377/EJQRP.article3185

Keywords:

parentcarers, parenting, emotional wellbeing, disability , learning disability

Abstract

Studies suggest that parents of children with a learning disability or who are autistic (i.e., parent carers) are at greater risk of poorer mental health. Several models and interventions have been utilised to support parent carer wellbeing; few have asked parents themselves what they find helpful. Furthermore, there is limited information for practitioners supporting this group. An interpretive phenomenological study explored emotional wellbeing with 17 parent carers. Themes were developed using Template analysis. Participants reported myriad factors that helped their wellbeing that were developed into three broad themes: i) Relationship with others ii) Protecting their sense of self, and iii) Managing the ongoing emotional rollercoaster. Participants also identified ways in which professionals could better support their wellbeing including: providing a safe reflective space, flexibility of support and awareness of the parents’ context (e.g., disability awareness; the systems around the child). Flexibility included offering online appointments and enabling parents to ‘dip in and out’ of counselling at key points in the child’s life. Furthermore, the breadth of wellbeing strategies identified by participants suggests that an integrative approach may be best placed for ongoing support of parent carer wellbeing.

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References

Apanasionok, M. M., Paris A., Griffin J., Hastings R. P., Finch E., Austin D., & Flynn, S. (2025). Digital psychological wellbeing interventions for family carers of children and adults with intellectual and developmental disabilities: A systematic review. Journal of Applied Research in Intellectual Disabilities 38(4), e70081. https://doi.org/10.1111/jar.70081

Arnold-Baker, C. (2019). The process of becoming: Maternal identity in the transition to motherhood. Existential Analysis, 30(2), 260-274.

Bager-Charleson, S. (2012). Personal development in counselling and psychotherapy. Sage.

Barrett Feldman, L. (2017). How emotions are made: The secret life of the brain. Houghton Mifflin Harcourt.

Berger, R. (2015). Now I see it, now I don’t: Researcher’s position and reflexivity in qualitative research. Qualitative Research, 15(2), 219-234. https://doi.org/10.1177/1468794112468475

Blackman, N., Vlachakis, K., & Anne, A. (2022). Brief report on six clinical cases of trauma in families that have children and adults who have a learning disability and/or are autistic. Tizard Learning Disability Review, 27(2), 69-77. https://doi.org/10.1108/TLDR-08-2021-0022

Bronfenbrenner, U. (1977). Toward an experimental ecology of human development. American Psychologist, 32(7), 513-531. https://doi.org/10.1037/0003-066X.32.7.513

Brooks, J., McCluskey, S., Turley, E., & King, N. (2015). The utility of template analysis in qualitative psychology research. Qualitative Research in Psychology, 12(2), 202-222. https://doi.org/10.1080/14780887.2014.955224

Benner, P. (1994). Interpretive phenomenology: Embodiment, caring and ethics in health and illness. Sage.

Cadell, S., Hemsworth, D., Quosai, T. S., Steele, R., Davies, E., Liben, S., Straatman, L., & Siden, H. (2014). Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model. American Journal of Orthopsychiatry, 84(2), 123-133. https://doi.org/10.1037/h0099384

Calhoun, L. G., & Tedeschi, R. G. (2010). Facilitating posttraumatic growth: A clinician’s guide. Routledge.

Crabtree, B. F., & Miller, W. (1999). Doing qualitative research (2nd ed.). Sage Publications.

Davis, H. (1993). Counselling parents of children with chronic illness or disability. BPS Books.

Disabled Children’s Partnership (2021). https://www.mencap.org.uk/get-involved/campaign-mencap/disabled-childrens-partnership/

Dunn, M. E., Burbine, T., Bowers, C. A., & Tantleff-Dunn, S. (2001). Moderators of stress in parents of children with autism. Community Mental Health Journal, 37(1), 39-52. https://doi.org/10.1023/A:1026592305436

Emerson, A. (2019). ‘Room of gloom’: Reconceptualising mothers of children with disabilities as experiencing trauma. Journal of Loss and Trauma. https://doi.org/10.1080/15325024.2019.1658946

Etherington, K. (2017). Personal experience and critical reflexivity in counselling and psychotherapy research. Counselling and Psychotherapy Research, 0(0), 1-10. https://doi.org/10.1002/capr.12080

Finlay, L. (2011). Phenomenology for therapists. Wiley- Blackwell.

Finlay, L., & Evans, K. (2009). Relational-centred research for psychotherapists: Exploring meanings and experience. Wiley Blackwell.

Flynn, S., Hastings, R. P., Burke, C., Howes, S., Lunsky, Y., Weiss, J. A., & Bailey, T. (2020). Online mindfulness stress intervention for family carers of children and adults with intellectual disabilities: Feasibility randomized controlled trial. Mindfulness, 11, 2161–2175. https://doi.org/10.1007/s12671-020-01436-0

Folkman, S. (2011). The Oxford handbook of stress, health and coping. Oxford University Press.

Folkman, S., & Moskowitz, J. T. (2000). Positive affect and the other side of coping. American Psychologist, 55(6), 647-654. https://doi.org/10.1037/0003-066X.55.6.647.

Gilbert, P. (2013). The compassionate mind. Robinson.

Goffman, E. (1968). Stigma. Penguin.

Gore, N., & Hastings, R. P. (2016). Mindfulness and acceptance-based therapies. In N. Beail (Ed.), Psychological therapies and people who have intellectual disabilities (pp. 44-52). British Psychological Society. https://doi.org/10.53841/bpsrep.2016.rep106

Gray, D. E. (2003). Gender and coping: The parents of children with high functioning autism. Social Science & Medicine, 56, 631-642. https://doi.org/10.1016/s0277-9536(02)00059-x

Griffin, J., & Gore, N. (2023). ‘Different things at different times’: Wellbeing strategies and processes identified by parents of children who have an intellectual disability or who are autistic, or both. Journal of Applied Research in Intellectual Disabilities, 36(4), 822-829. https://doi.org/10.1111/jar.13098

Hastings, R. P. (2016). 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, 50, 165-194. https://doi.org/10.1016/bs.irrdd.2016.05.002

Hastings, R., & Taunt, H. M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation, 107(2),116-127. https://doi.org/10.1352/0895-8017(2002)107<0116:PPIFOC>2.0.CO;2

Hastings, R. P., Kovshoff, H., Brown, T., Ward, N. J., Espinosa, F. D., & Remington, B. (2005). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism, 9(4), 377-391. https://doi.org/10.1177/1362361305056078

Heidegger, M. (1962). Being and time. Harper and Row.

Jess, M., Hastings, R. P., & Totsika, V. (2017). The construct of maternal positivity in mothers of children with intellectual disability. Journal of Intellectual Disability Research, 61, 928-938. https://doi.org/10.1111/jir.12402

Jones, L., Gold, E., Totsika, V., Hastings, R. P., Jones, M., Griffiths, A., & Silverton, S. (2017). A mindfulness parent well-being course: Evaluation of outcomes for parents of children with autism and related disabilities recruited through special schools. European Journal of Special Needs Education. https://doi.org/10.1080/08856257.2017.1297571

Kashdan, T. B., & Rottenberg, J. (2010). Psychological flexibility as a fundamental aspect of health. Clinical Psychology Review, 30, 865-878. https://doi.org/10.1016/j.cpr.2010.03.001

Kelso,T., French, D., & Fernandez, M. (2005). Stress and coping in primary caregivers of children with a disability: A qualitative study using the Lazarus and Folkman process model of coping. Journal of Research in Special Educational Needs, 5(1), 3-10. https://doi.org/10.1111/j.1471-3802.2005.00033.x

King, N. (2004). Using templates in the thematic analysis of text. In C. Cassell, & G. Symon (Eds.), Essential guide to qualitative methods in organizational research. Sage.

King, N., & Brooks, J. (2017). Template analysis for business and management students. Sage.

Konrad, S. (2006). Posttraumatic growth in mothers of children with acquired disabilities. Journal of Loss & Trauma, 11(1), 101-113. https://doi.org/10.1080/15325020500358274

Larson, E. (1998). Reframing the meaning of disability to families: The embrace of paradox. Social Science & Medicine, 47, 865-875. https://doi.org/10.1016/s0277-9536(98)00113-0

Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal and coping. Springer.

Martela, F., & Steger, M. F. (2016). The three meanings of meaning in life: Distinguishing coherence, purpose and significance. The Journal of Positive Psychology, 11(5), 531-545. https://doi.org/10.1080/17439760.2015.1137623

McConkey, R., Kelly, F., & Craig, S. (2011). Access to respite breaks for families who have a relative with intellectual disabilities: A national survey. Journal of Advanced Nursing, 67(6), 1349-57. https://doi.org/10.1111/j.1365-2648.2010.05586.x.

McConnell, D., Savage, A., Sobsey, D., & Uditsky, B. (2015). Benefit-finding or finding benefits?: The positive impact of having a disabled child. Disability and Society, 30(1), 29-45. https://doi.org/10.1080/09687599.2014.984803

McCubbin, H. I., & Patterson, J. M. (1983). The family stress process. Marriage & Family Review, 6(1-2), 7-37. https://doi.org/10.1300/J002v06n01_02

Mitter, N., Ali, A., & Scior, K. (2019). Stigma experienced by families of individuals with intellectual disabilities and autism: A systematic review. Research in Developmental Disabilities, 89, 10-21. https://doi.org/10.1016/j.ridd.2019.03.001

Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). “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. Research in Autism Spectrum Disorders, 3, 670-684.

National Institute for Health Research (2021). Guidance on co-producing a research project, April 2021 [NIHR Guidance on co-producing a research project (learningforinvolvement.org.uk)].

Pelchat, D., Levert, M.J., & Bourgeois-Guerin, V. (2009). How do mothers and fathers who have a child with a disability describe their adaptation/transformation process? Journal of Child Health Care, 13(3), 239-259. https://doi.org/10.1177/1367493509336684

Petrillo, M., & Bennett, M (2021). Valuing carers 2021: Centre for Care. Carers UK https://centreforcare.ac.uk/wp-content/uploads/2023/05/Valuing_Carers_WEB2.pdf

Pit-ten Cate, I. M. (2003). Family adjustment to disability and chronic illness in children. [Doctoral Dissertation University of Southampton, UK]. ProQuest, UMI Dissertations Publishing, 2003, C817308.

Reeder J. & Morris J. (2021). Becoming an empowered parent. How do parents successfully take up their role as a collaborative partner in their child’s specialist care? Journal of Child Health Care, 25(1):110-125. https://doi.org/10.1177/1367493520910832

Reid, R., Gill, F., Gore, N., & Brady, S. (2016). New ways of seeing and being: Evaluating an acceptance and mindfulness group for parents of young people with intellectual disabilities who display challenging behaviour. Journal of Intellectual Disabilities, 20(1), 5-17. https://doi.org/10.1177/1744629515584868

Rorty, R. (2018). Philosophy and the mirror of nature. Princeton University Press.

Ryan, S. (2020). Love, learning disabilities and pockets of brilliance: How practitioners can make a difference to the lives of children, families and adults. Jessica Kingsley.

Rydzewska, E., Dunn, K., Cooper, S. A., & Kinnear, D. (2021). Mental ill‐health in mothers of people with intellectual disabilities compared with mothers of typically developing people: a systematic review and meta‐analysis. Journal of Intellectual Disability Research, 65(6), 501-534. https://doi.org/10.1111/jir.12827

Ryff, C. (1989). Happiness is everything, or is it?: Explorations on the meaning of psychological well-being. Journal of Personality and Social Psychology, 57, 1069–1081. https://doi.org/10.1037/0022-3514.57.6.1069

Seligman, M. (2011). Flourish: A new understanding of happiness and well-being and how to achieve them. Nicholas Brealey Publishing.

Shakespeare, T. (2018). Disability: The basics. Routledge.

Shakespeare T. (2022). Recognising lived experience is essential to empowering disabled patients. British Medical Journal 2022, 378, 2359. https://doi.org/10.1136/bmj.o2359

Stanford, C., Totsika, V., & Hastings, R .P. (2020). ‘Above and beyond’: The perceptions of mothers of children with autism about ‘good practice’ by professionals and services. Research in Autism Spectrum Disorders, 77, 101615. https://doi.org/10.1016/j.rasd.2020.101615

Sutherland, D., Flynn, S., Griffin, J., & Hastings, R. P. (2025). Programme recipient and facilitator experiences of Positive Family Connections for families of children with intellectual disabilities and/or who are autistic. Journal of Applied Research in Intellectual Disabilities, 38:e70003. http://dx.doi.org/10.1111/jar.70003

Totsika, V., Hastings, R. P., Emerson, E., Lancaster, G. A., & Berridge, D. M. (2011). A population-based investigation of behavioural and emotional problems and maternal mental health: Associations with autism spectrum disorder and intellectual disability. The Journal of Child Psychology and Psychiatry, 52(1), 91-99. https://doi.org/10/1111/j.1469-7610.2010.02295.x

Tuohy, D., Cooney, A., Dowling, M., Murphy, K., & Sixsmith, J. (2013). An overview of interpretive phenomenology as a research methodology. Nurse Researcher, 20(6), 17-20. https://doi.org/10.7748/nr2013.07.20.6.17.e315

Turley, E. L. (2016). ‘Like nothing I’ve ever felt before’: Understanding consensual BDSM as embodied experience. Psychology & Sexuality, 7(2), 149–162. https://doi.org/10.1080/19419899.2015.1135181

van Manen, M. (2014). Phenomenology of practice. Routledge.

van Manen, M., & Adams, C. A. (2010). Qualitative research: Phenomenology. In E. Baker, P. Peterson, & B. McGaw (Eds.), International encyclopaedia of education (pp.201-209) 6. Elsevier.

Willig, C. (2013). Introducing qualitative research in psychology (3rd ed.). Open University Press.

Willig, C. (2017). Interpretation in qualitative research. In C. Willig, & W. Stainton Rogers (Eds.), The SAGE handbook of qualitative research in psychology (pp. 274-288). Sage.

Woolfson, L. (2004). Family well-being and disabled children: A psychosocial model of disability-related child behaviour problems. British Journal of Health Psychology, 9, 1-13. https://doi.org/10.1348/135910704322778687