‘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

Figures & data

Table 1. CASP checklist results for included studies.

Included Studies	Bingham et al. (2017)	Bingham and Meyer (2011)	Bhattacharya (2012)	Murphy et al. (2015)	Knudsen et al. (2018)	Eassey et al. (2019)
CASP questions
Q1-Was there a clear statement of the aims of the research?	No	Yes	Yes	Yes	Yes	Yes
Q2-Is a qualitative methodology appropriate	Yes	Yes	Yes	Yes	Yes	Yes
Q3-Was the research design appropriate to address the aims of the research?	Yes	Yes	Yes	Yes	Yes	Yes
Q4-Was the recruitment strategy appropriate to the aims of the research?	Yes	Yes	Yes	Yes	Yes	Yes
Q5- Was the data collected in a way that addressed the research issue?	Yes	Yes	Yes	Yes	Yes	Yes
Q6- Has the relationship between researcher and participants been adequately considered?	No	No	No	Yes	Yes	Yes
Q7- Have ethical issues been taken into consideration?	No	No	Yes	Yes	Yes	Yes
Q8- Was the data analysis sufficiently rigorous?	Yes	Yes	Yes	Yes	Yes	Yes
Q9-Is there a clear statement of findings?	Yes	Yes	Yes	Yes	Yes	Yes
Q10- How valuable is the research?	Yes	Yes	Yes	Yes	Yes	Yes

Figure 1. Flow of information through the different phases of the systematic review (based on the PRISMA reporting flowchart).

Table 2. Summary of included studies.

Authors	Country	Patients (n)	Sex (M/F)	Age Range (y)	Patient population	Data collection	Data analysis	Self-determination theoretical framework	Research topics and scope
Children and adolescents
Bingham & Meyer (2011)	USA	17	10/7	8–16	Children living with Cystic Fibrosis (CF)	Structured interviews and SDT survey	Categorisation	BPN part of analytical approach	1) Barriers to adherence, 2) Attitudes about CF, 3) Healthcare experience Influences of CF self-management
Bingham et al. (2017)	USA	15	13/2	7–17	Children living with asthma	Semi-structured interviews	Categorisation and deductive analysis from interview questions	Intrinsic and Extrinsic motivation and BPN part of the analytical approach and used to interpret findings	1) Illness experience, 2) Preferred recreational activities (non-digital and digital), 3) Motivation to improve asthma symptoms
Adults
Bhattacharya (2012)	USA	31	15/16	Age group % reported: 25 to >65 years	Rural African Americans living with Type 2 Diabetes (T2D)	Narrative approach Semi-structured interview	Thematic analysis (selective coding)	BPN used to interpret findings	1) Intrinsic and extrinsic motivation, 2) Influences upon T2D self-management
Murphy et al. (2015)	Africa (South)	22	6/16	35–75	People living with diabetes and hypertension	In-depth interviews	Inductive and Deductive analysis Categorisation	BPN part of analytical approach	1) Patient perceived motivation 2) capacity for self-management and lifestyle change
Knudsen et al. (2018)	Netherlands	14	4/10	18–30	Young adults living with Cystic Fibrosis	Semi-structured interviews	Thematic analysis	BPN used to interpret findings but not part of analytic approach	Experiences of life coaching intervention for those living with Cystic Fibrosis** Illness experience
Eassey et al. (2019)	Australia	29	14/15	19–74	People living with severe asthma	Narrative approach Semi-structured interviews Follow-up open-ended questions	Inductive and deductive analysis Thematic analysis	BPN- in depth exploration on the role of autonomy	1) Illness experience, 2) Role of autonomy

NS = Not Stated.

BPN = Basic Psychological Needs.

OIT = Organismic Integration Theory.

** Although this study was exploring the experiences of life coaching for patients living with CF there were sections in the analysis which noted their illness experience. Thus, this review included the sections on people’s views and experiences of living with CF and excluded sections on perceptions of the life coaching.

Figure 2. Conceptual diagram of the overarching theme and the sub-categories using framework synthesis.

Bingham, P. M., Crane, I., & Manning, S. W. (2017). Illness experience, self-determination, and recreational activities in pediatric asthma. Games for Health Journal, 6(3), 179–186. doi:10.1089/g4 h.2016.0007 doi: 10.1089/g4h.2016.0007

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Bingham, P. M., & Meyer, M. (2011). Self determination and health Behaviors in children with Cystic fibrosis. The Open Pediatric Medicine Journal, 5, 1–7. doi: 10.2174/1874309901105010001

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Bhattacharya, G. (2012). Psychosocial Impacts of type 2 diabetes self-management in a rural African-American population. Journal of Immigrant & Minority Health, 14(6), 1071–1081. doi: 10.1007/s10903-012-9585-7

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Murphy, K., Chuma, T., Mathews, C., Steyn, K., & Levitt, N. (2015). A qualitative study of the experiences of care and motivation for effective self-management among diabetic and hypertensive patients attending public sector primary health care services in South Africa. BMC Health Services Research, 15, 303. doi: 10.1186/s12913-015-0969-y

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Knudsen, K. B., Boisen, K. A., Katzenstein, T. L., Mortensen, L. H., Pressler, T., Skov, M., & Jarden, M. (2018). Living with cystic fibrosis - a qualitative study of a life coaching intervention. Patient Preference and Adherence, 12, 585–594. doi: 10.2147/PPA.S159306

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Eassey, D., Reddel, H. K., Ryan, K., & Smith, L. (2019). The impact of severe asthma on patients’ autonomy: A qualitative study. Health Expectations, 22(3), 528–536. doi: 10.1111/hex.12879

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