A Patient-Centred Framework for Counselling and Psychotherapy with Persons with a Non-Visible Illness/Disability: Cystic Fibrosis

Abstract

Persons with cystic fibrosis (CF) struggle with anxiety and depression at rates two to three times higher than the general population which can negatively impact their physical health. They can feel misunderstood and shut out in counselling and psychotherapy sessions, at CF clinic appointments and within medical systems, when it comes to adequately understanding and addressing their mental health. There is a gap in the CF - specific counselling and psychotherapy research literature for robust participatory action research (PAR) designed by and for those with CF in alignment with the disability slogan, “nothing about us without us,” as well as for plain language guidelines even while it has been shown that this would facilitate uptake in target groups and implementation within systems. The aim of this study has been to provide a fuller understanding of the experience of individuals with CF and to develop a plain language Patient - Centred Framework for Counselling and Psychotherapy in alignment with their needs. A purposive representative sampling plan was employed to select co-researchers for three focus groups comprised of persons with CF at various phases of their disease process and human developmental stage - cystic fibrosis related diabetes (CFRD); CF aged 39 +; CF aged 18-29. This study utilized The Bridge Model, ™ a community based participatory action research (CBPAR) approach of patient engagement, and the four steps of PAR -planning, action, observation, and reflection - and therefore patient participants were involved as co-researchers in every aspect of the project inclusive of co-facilitating focus groups. Semi-structured interviews were also conducted to get a rich picture of the personal experience of individual co-researchers as well as their needs regarding counselling and psychotherapy that they might not share in a focus group setting. Data analysis of the focus groups and semi-structured interviews was conducted utilizing Interpretative Phenomenological Analysis (IPA). A draft framework was developed based on the findings, and iterations were shared with key stakeholders, CF co-researchers, CF clinic patients and members of the CF interdisciplinary team, integrating their feedback until all were satisfied with the outcome. The outcome of our study is a plain language Patient-Centred Framework for Counselling and Psychotherapy with Persons with a Non-Visible Illness/Disability: Cystic Fibrosis, outlining preferred therapist attitudes, knowledge, and skills as well as a note to our CF clinic team, which has developed into a quality improvement project for our Ottawa Hospital Adult Cystic Fibrosis Clinic helping us to better address our patients’ mental health needs. We hope that it can be of benefit to other CF counsellors/psychotherapists and CF interdisciplinary team members.