Data analysis

This study is based on in-depth data analysis of 30 transcripts of the semistructured interviews. The transcripts were analysed using a framework approach.³⁹ Framework analysis allows a structured and organised approach for theme-based and case-based analyses, which produces a visual matrix of themes by participants. The approach is appropriate for semistructured interviews that discuss similar topics, and results in sensible data reduction, which allows for multidisciplinary and collaborative approaches to analysis.⁴⁰

Researchers (UK and AM) read the transcripts repeatedly to familiarise themselves with the data, and then independently coded them. The first phase of the analysis followed a deductive approach by devising codes and key concepts, which were mapped onto the first conceptual framework of psychological adaptation and recovery developed by UK (PhD candidate). The conceptualisation of some themes (ie, function, activity, participation) was informed by the WHO International Classification of Functioning, Disability and Health framework, which describes recovery as a process of improvement in the psychological, physical and social domain.⁴¹ The second phase of the analyses relied on an inductive approach, adding themes from the initial coding in order to complement the framework and consolidate the findings.⁴² This resulted in a framework (figure 1) on which data were mapped. Themes were then compared within and between individuals with the help of visual matrices (figures 2 and 3). The themes were described systematically, and the findings discussed among the team and embedded in the broader literature.

The conceptual framework on which the themes were mapped.

Visual matrix of individual-level themes, grouped by age at diagnosis and gender. Note: Adolescents are individuals who were diagnosed at 24 years or under, and young adults are those who were diagnosed above age 24 years. F, female; M, male.

Visual matrix of environmental-level themes, grouped by age at diagnosis and gender. Note: Adolescents are individuals who were diagnosed at 24 years or under, and young adults are those who were diagnosed above age 24 years. F, female; M, male.

The first author (UK) kept a reflexive journal to explore the concepts and repetitive themes. In order to account for participants’ and researchers’ cultural context and understanding of the interviews, meanings from data were produced jointly within the team discussions. Due to the nature of this analysis the exact inter-rater reliability was not determined.⁴³ Interpretations on both sides enabled confirmation or rejection of researchers’ perceptions of data.⁴⁴ The goal of this work was not to address the questions of prevalence and extent, therefore quasi-statistical phrases such as ‘some’, ‘many’ or ‘several’ are used to not make the findings quantifiable and consequently misleading.⁴⁵ Please see figure 4 for the detailed steps of the analysis.

The steps included in framework analysis.