‘You have to re-orientate to this new terrain’: emotional wellbeing in parents of children with a learning and/or developmental disability

Despite the acknowledged additional stressors parents of children with a learning and/or developmental disability (parent carers) experience, most parent carers manage to maintain their emotional wellbeing. However, the voice of the parent carer is often absent in research, practice, service development and delivery more broadly, which can foster a feeling of disempowerment. As an insider researcher (a parent of a 13-year-old with a learning and developmental disability) I am in a prime position to explore parent carers’ emotional wellbeing, identifying strengths and strategies that could have wider implications.

Adopting a pluralistic qualitative approach (Frost & Bailey-Rodriguez, 2020), I utilised strategies from different methods such as Constructivist Grounded Theory (Charmaz, 2014) and interpretive phenomenology (Benner, 1994, Heidegger, 1962), which acknowledges the researcher’s experience and reflexive position. I conducted semi-structured interviews with 18 parent carers to ascertain how they attained and maintained their own emotional wellbeing. Utilising Template Analysis (King, 2004), which enables use of a priori knowledge in the development of themes, seven themes were identified and categorised using the mnemonic SPECTRA (Sense of purpose and meaning; Positive others; Empowerment; Child; ‘Time that is mine’; Replenish and recalibrate [A Swiss army knife of self-care] and Awareness). A further over-arching theme of ‘Reorienting and Finding Balance’, which included changing perspective and values, was threaded throughout SPECTRA. I developed a model to represent the dynamic nature of participants’ emotional wellbeing.

Findings included participants’ strong desire to help other parents (despite parents rarely being used as a resource by services and professionals) and the development of ‘enhanced perspective taking’ to help parents understand their child. The reorienting process was supported by connection with positive others, both direct and indirect.

Ethical issues (such as consent, feedback, confidentiality) were considered throughout the research process and participants were invited to review not only the transcripts and developed themes but also the material used for products.

The study’s limitations include its small sample, the focus on parent carers who were maintaining their emotional wellbeing and, due to the interpretive nature of the methodology, my own insider status influencing the findings (although this was possibly also a strength).

The research has strong implications for research and practice and has already been developed into a book ‘Day by Day: Emotional wellbeing in parents of disabled children’, Guidance for education, health and social care professionals and the Family Carers module for MindEd (www.minded.org.uk), which has now become part of the National Health Service’s mandatory Learning Disability and Autism training.