Understanding the health and social care needs of people living with IBD: A meta-synthesis of the evidence

Table 1 Characteristics of synthesised studies

Ref.	Theoretical perspective	Sampling strategy	Recruitment setting	Data collection method	Analytical approach
Dudley-Brown[17]	Phenomenological	Convenience sample (n = 3)	Patients sampled from IBD outpatient clinic when attending for their scheduled appointment	In depth semi structured interviews	Coding and memo system used, grouped and transformed into an interpretive understanding of the phenomenology of living with UC, with the extraction of emergent themes
Daniel et al[51]	Phenomenological	Purposive sample (n = 5)	Patients recruited by an advertisement in national newspaper	In depth semi structured interviews	Kings Goal Attainment Framework used as theoretical framework; thematic content analysis of interviews to develop themes in line with this framework
Hall et al[50]	Grounded theory	Purposive sample (n = 31)	Recruited from a previous unconnected study, sampled by lowest quintile of UK-IBDQ, established low quality of life	In depth interviews and focus groups	Concurrent data collection and analysis to identify emerging themes; selective coding was used to enabled theoretical framework
Burger et al[38]	Interpretive phenomenological design	Convenience sample (n = 8)	Participants from mailing list of Indiana Chapter of Crohn’s and Colitis Foundation of America, answered advert and recruited according to inclusion/exclusion criteria	In depth interviews, each participant interviewed 3 times	Thematic analysis, identification analysis and identification of paradigm cases used
Lynch et al[53]	Phenomenological	Purposive sample (n = 4)	Participants recruited from Crohn’s and Colitis New Zealand	Semi structured in depth interviews	Thematic analysis from transcribed data, ongoing process of interpretation used to refine themes to describe nature of the experience
Pihl-Lesnovska et al[52]	Grounded theory	Theoretical sample(n = 11)	Patients recruited from the gastroenterology outpatient clinic	Unstructured in depth interviews	Constant comparative analysis used, saturation determined sample size; core category and related categories identified; two authors analysed all interview transcripts
Cooper et al[54]	Framework	Purposive sampling (n = 24)	Patients sampled from IBD outpatient clinic when attending for their scheduled appointment	Semi structured in depth interviews	Thematic content analysis using framework

IBD: Inflammatory bowel disease; UK-IBDQ: United Kingdom version of the McMaster Inflammatory Bowel Disease Questionnaire; UC: Ulcerative colitis.

Table 2 Demographics of synthesised studies

Ref.	Date	Country	Age range	Gender	Disease	Disease duration	Sample size
Dudley-Brown[17]	1996	United States	30-50 yr	1 female; 2 male	3 ulcerative colitis	1-10 yr	3
Daniel et al[51]	2001	Canada	18-24 yr	2 female; 3 male	IBD not specified	< 2 yr	5
Hall et al[50]	2005	United Kingdom	Not specified but all > 16 yr	19 female; 12 male	14 Crohn’s disease; 17 ulcerative colitis	Not specified but all > 2 yr	31
Burger et al[38]	2005	United States	30-65 yr	6 female; 2 male	6 Crohn’s disease; 2 ulcerative colitis	2-40 yr	8
Lynch et al[53]	2007	New Zealand	16-21 yr	3 female; 1 male	All Crohn’s disease	< 18 mo	4
Pihl-Lesnovska et al[52]	2010	Sweden	29-83 yr	5 female; 6 male	All Crohn’s disease	2-33 yr	11
Cooper et al[54]	2010	United Kingdom	30-40 yr	11 female; 13 male	12 Crohn’s disease; 12 ulcerative colitis	1- > 10 yr	24

IBD: Inflammatory bowel disease.

Table 3 Themes and concepts

1st order constructs	Ref.	2nd order constructs	Line of argument synthesis
Limitations/missing out on life events	[17,38,50-54]	Detained by disease (“pull”)	“Pushed and pulled: a compromised life”.Constant conflict between IBD and normal life results in a compromised life.Pushes to be normal but IBD pulls individual back.
Humiliation of incontinence	[17,50,51,53,54]	Fear of incontinence - unpredictability, humiliation
Social isolation	[17,38,50,51,53,54]	Behaviour due to fear of incontinence - avoidance
Unpredictability	[38,50-53]	Impact of behaviour - socially isolated, missing out on life events, limited life, relationship burden, feeling damaged
Powerlessness	[17,38,53,54]	Fatigue
Feeling damaged	[38,52-54]
Impact on relationships	[17,38,50-54]
Negative emotions	[17,50-54]
Stress	[38,51-54]
Fatigue	[38,50-53]
A disease for life	[38, 51-53]	Living in a world of disease
Fear of long term effects	[38, 51-53]
Invisible disease	[38,50,53,52]
Acceptance yet fight	[38,53,54]	Wrestling with life (“push”)
Knowing my body	[38,53,54]	Striving to thrive
Control	[38,51-54]
Maintaining normality	[38,50,52,53]

IBD: Inflammatory bowel disease.