They know it's safe - they know what to expect from that face: perceptions towards a cognitive-behavioural counselling programme among caregivers of children with cystic fibrosis.

Abstract

To explore the experiences of eight caregivers who provide care to children with cystic fibrosis in an eight-week cognitive-behavioural counselling programme at a children's hospital in Winnipeg, Canada. Youth with cystic fibrosis experience significant behavioural and psychosocial challenges, such as depression, anxiety and poor treatment adherence. Caregivers are critical to the provision of care and treatment to young people living with cystic fibrosis. Caregivers of youth with cystic fibrosis experience psychosocial morbidity. Thus, the development of counselling interventions is required to enhance psychosocial well-being among the caregivers of youth with cystic fibrosis. This study was informed by the thematic analytic qualitative research tradition. In-depth, semistructured interviews were conducted with eight caregivers who participated in our programme. The audiotaped interviews were then subject to thematic analysis. The counselling sessions were experienced as 'distinctly different' from routine appointments at the hospital and were characterised by a sense of listening and bidirectional communication. In addition to acquiring a sense of trust and accountability through the programme, counselling appeared to enhance caregivers' perception of their time use, leading to greater temporal agency. From this evidence-based cognitive-behavioural counselling programme, insights about the complex psychosocial lives of the cystic fibrosis community are discussed within the context of the literature. Integrating cognitive-behavioural counselling into routine clinical CF care should be considered as a method to enhance caregiving capacity in the CF community and should be championed by nurses.