‘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

Abstract

Background Most parents of children with an intellectual disability or who are autistic identify positives in their family life and their own wellbeing, in addition to reported mental health challenges. Several models and interventions have been developed in relation to parent carer wellbeing. Few studies have asked parent carers how they support their own wellbeing. Method Adopting an interpretive phenomenological approach this study utilised semi‐structured interviews. Seventeen parent carers were asked what supported their emotional wellbeing. Template Analysis was applied to develop themes. Results All participants identified factors that supported their wellbeing. Themes included strategies that countered stress (time for themselves, relaxation, ‘parking’ difficulties) and broader wellbeing strategies (finding meaningful life direction, greater understanding of child). An ongoing process of supporting wellbeing by ‘Reorienting and Finding Balance’ appeared central. Conclusions Self‐identified, multi‐dimensional strategies benefit parents' emotional wellbeing and should be considered in the context of support provided to families.

Who cares about the carers? A call to action on behalf of mothers of disabled children

“…The response needed is likely to be complex, and implemented at multiple levels. These parents were already experiencing difficulties, and over the last three years have faced significant challenges to their health and wellbeing: one-size-fits all solutions are unlikely to be successful given their diverse situations and needs ( Griffin and Gore, 2023 ).…”

“…However, even where employers are disinterested in social justice, they may consider benefits from both a utilitarian and reputational perspective: not just how employment benefits the individual, but how the individual may benefit the employment. This parent group is one that is likely to understand trauma, complexity and managing multiple priorities: their experiences may have also helped them to gain greater emotional awareness ( Griffin and Gore, 2023 ). They have frequently had to advocate on behalf of disadvantage, to manage many simultaneous competing demands, and to demonstrate extreme levels of perseverance in the face of adversity.…”