Living with cystic fibrosis – a qualitative study of a life coaching intervention

Abstract

BackgroundCystic fibrosis (CF) is a chronic, life-shortening disease with a significant treatment burden. To support young adults with CF in their everyday life, we previously conducted a life coaching feasibility trial (published elsewhere). The aim of the current study was to explore how life coaching was experienced by study participants within the context of their lives with CF.MethodsA qualitative study using individual interviews. Respondents (n=14) were recruited from the intervention group after participation in life coaching. Data were analyzed from a phenomenologic-hermeneutical perspective, inspired by Ricoeur’s theory.FindingsPeriodic exacerbations of CF led to worry about disease progression, and interrupted the respondents’ ability to fulfill daily life roles satisfactory. The treatment burden demanded self-discipline and this was sometimes at the expense of social life or career. The young adults rarely spoke to others about their situation; therefore, they valued opening up to a professional coach about life and concerns. We identified three themes: 1) living an unpredictable life; 2) the conflict between freedom and the constraints of illness; and 3) the value of telling one’s story. In relation to all three themes, coaching promoted reflection over life situations, reframed thoughts, and facilitated finding new ways to manage everyday life.ConclusionLife coaching is an intervention that is valued for those who feel challenged by their CF disease. Coaching programs should be designed to include the participants, when they feel a need for coaching and are open for change. Screening parameters to identify persons who will most likely benefit from life coaching are needed.

‘It is like learning how to live all over again’ A systematic review of people’s experiences of living with a chronic illness from a self-determination theory perspective

“…Figure 1 provides a PRISMA flow diagram indicating the inclusion and exclusion of articles at each stage of the screening process. The included papers were published between 2011 and 2019, from Australia (Eassey, Reddel, Ryan, & Smith, 2019 ), the Netherlands (Knudsen et al, 2018 ), South Africa (Murphy, Chuma, Mathews, Steyn, & Levitt, 2015 ) and the United States (Bhattacharya, 2012 ; Bingham & Meyer, 2011 ; Bingham, Crane, & Manning, 2017 ). The included papers described people’s experiences of living with: cystic fibrosis (Bingham & Meyer, 2011 ; Knudsen et al, 2018 ), asthma (Bingham et al, 2017 ; Eassey et al, 2019 ), diabetes (Bhattacharya, 2012 ) and hypertension (Murphy et al, 2015 ).…”

“…The majority of studies did not focus on what matters to people in their everyday experiences of living with a chronic illness but rather more specifically on barriers to self-management (Bhattacharya, 2012 ; Bingham et al, 2017 ; Bingham & Meyer, 2011 ; Knudsen et al, 2018 ; Murphy et al, 2015 ). Of the six studies, four aimed to identify factors that could be used in subsequent intervention studies by focusing on the challenges to patients’ basic psychological needs (Bhattacharya, 2012 ; Bingham et al, 2017 ; Bingham & Meyer, 2011 ; Murphy et al, 2015 ), one study explored patient experiences of participating in a life coaching intervention (Knudsen et al, 2018 ) and one explored in depth the role of autonomy in experiences of living with a debilitating condition (Eassey et al, 2019 ). Five studies reported on all three of SDT’s basic psychological needs (autonomy, competence and relatedness) (Bhattacharya, 2012 ; Bingham et al, 2017 ; Bingham & Meyer, 2011 ; Knudsen et al, 2018 ; Murphy et al, 2015 ) and one study analysed and interpreted one of the needs (autonomy) in depth using people’s narratives (Eassey et al, 2019 ).…”

“…Of the six studies, four aimed to identify factors that could be used in subsequent intervention studies by focusing on the challenges to patients’ basic psychological needs (Bhattacharya, 2012 ; Bingham et al, 2017 ; Bingham & Meyer, 2011 ; Murphy et al, 2015 ), one study explored patient experiences of participating in a life coaching intervention (Knudsen et al, 2018 ) and one explored in depth the role of autonomy in experiences of living with a debilitating condition (Eassey et al, 2019 ). Five studies reported on all three of SDT’s basic psychological needs (autonomy, competence and relatedness) (Bhattacharya, 2012 ; Bingham et al, 2017 ; Bingham & Meyer, 2011 ; Knudsen et al, 2018 ; Murphy et al, 2015 ) and one study analysed and interpreted one of the needs (autonomy) in depth using people’s narratives (Eassey et al, 2019 ). A range of qualitative analysis methods was used; all sought to underpin their analysis or interpretation with SDT’s theory of basic psychological needs.…”

“…Feeling empowered meant having a sense of personal control over their condition and a sense of choice in health-related decisions. The authors of the included studies described a lack of personal control and lack of choice over health decisions and their condition as a ‘barrier to autonomy’ (Bhattacharya, 2012 ; Knudsen et al, 2018 ; Murphy et al, 2015 ). One author further suggested that ‘the lack of autonomy meant negative [health] outcomes were inevitable to participants’ (Bhattacharya, 2012 ).…”

“…People reported that they valued making autonomous decisions which at times conflicted with recommended guidelines for optimising health (Knudsen et al, 2018 ). All but one study reported that, as a result of the lack of choice and collaboration, some participants exerted their personal control by deciding not to take their medications strictly as directed, or as the authors described it as ‘being non-adherent’ (Bhattacharya, 2012 ; Bingham et al, 2017 ; Bingham & Meyer, 2011 ; Murphy et al, 2015 ).…”