The Formal Support Experiences of Mothers of Adolescents With Intellectual Disabilities in Edinburgh, UK

Abstract

In the United Kingdom, healthcare provision for children with intellectual disabilities (ID) has shifted away from institutions to the community. Today, family members most often assume the primary caregiver role and look after care recipients in the home. The support needs of caregivers, therefore, represent an important area of research that should help caregivers enhance their quality of life. The aim of this study was to understand the received formal support perceptions of mothers of ID adolescents over time. This study used a longitudinal qualitative method in three phases. Semistructured interviews were conducted with seven mothers at three points in time (initial, at 6 months, and at 18 months). Constant comparative analysis was conducted on transcribed interviews. The three themes that emerged from research included (1) the process of complex emotions, (2) the perception of received support, and (3) the process of fighting reactions. Mothers expressed different levels of satisfaction and dissatisfaction with the range of support received. Respite care was, overall, a beneficial intervention for participants. However, some mothers felt health professionals to be insensitive, showing lack of understanding and empathy, diminished personhood, and perceived lack of respect for the human value of their children with ID. The "fighting process" experienced when applying for financial help from the social welfare system was also pointed out as stressful. Further exploration of the professional support needs of mothers is important to support effectively their effective caregiving role. Professionals should increase their awareness of caregiver sensitivities and be respectful of individual responses by providing empathy and understanding from the caregivers' point of view.