The Reported Experiences of Mothers of High-Functioning Cerebral Palsy Adults

Abstract

The experience of raising children is one that is generally considered to be very challenging for mothers. These challenges often arise as a result of the variety of demands and expectations associated with each passing milestone. For mothers of children with high-functioning Cerebral Palsy (CP) these demands are often more intensive due to the extensive interventions required to help their children actualise their potential. The aim of this study was to report on, and interpret the unique nature of experiences confronted by mothers of high-functioning CP adults. In doing so, the study adds to the deficit of literature that demonstrates how societal judgment impacts mothers’ perceptions of their experiences and highlights why it is necessary to cater for high-functioning CP individuals in a mainstream society. Therefore, by providing mothers with the opportunity to articulate their experiences through semi-structured interviews, their lesser-considered voices and subjective perceptions are heard. Participants’ responses to the interview schedule were analysed through the use of an Interpretive Phenomenological framework in order to understand the unique and in-depth nature of mothers’ personal experiences. These responses were dissected into themes through the use of Thematic Analysis. ‘Trauma’ and ‘loneliness and misunderstanding’ were highlighted as prominent emotional responses, and are followed by a discussion of the survival and grief-orientated coping responses mothers reported experiencing. Lastly, mothers’ desires for circumstantial control and worries about their adult CP children’s futures were identified as integral to understanding their experiences. The study was noted to have implications for socialisation studies as it demonstrated how social isolation can affect maternal emotional well-being. Moreover, the study was noted as having implications in resilience and Humanistic studies as the levels of resolve mothers adopted to cope with their circumstances were highlighted. Lack of generalisability and mothers’ inherent biases concerning their children’s functional abilities were noted as potential limitations to the study. The impact of raising a high-functioning CP child on mothers’ journeys as well as the changing worldviews mothers experience as part of their journey were recommended as noteworthy topics for future research