Table 2.
Attributes of included studies.
| Author and Date | Location of Research | Population and Number |
Aim of Study | Data Collection | Data Analysis * | Results/Findings |
|---|---|---|---|---|---|---|
| Alexakis et al. (2015) [54] |
UK | Young people with IBD from BME groups (16–24 yrs) n = 20 |
To identify and characterise the experiences (positive and negative) and difficulties faced by young IBD patients from BME communities. | Semi-structured interviews. | Thematic analysis. | Four themes: Culture and religion Parents, families, and the wider community Education Healthcare services and support |
| Barned et al. (2016) [40] | Canada | Children and adolescents with IBD (10–17 yrs) n = 25 |
To determine how children and adolescents with IBD go about deciding if and when to tell others about their illness. | Semi-structured interviews. | Thematic analysis. | Three themes: To disclose or conceal: making the decision When to tell: factors influencing disclosure decisions
Challenges of IBD disclosure: the reactions of others |
| Brydolf and Segesten (1996) [52] | Sweden | Adolescents and young adults with UC (11–31 yrs) n = 28 |
To gain a deeper understanding of the adolescents’ experiences of how it felt to live with UC. | Interviews. | Constant comparative method for grounded theory. | Eight categories: Alienation Reduced living space Support Lack of support Confidence in self Disbelief in self Role identification as a child/patient Role identification as an adult |
| Carter et al. (2020) [55] | UK | Young people with IBD (14–25 yrs) n = 31 |
Exploring stigma and disclosure in young people with IBD. | Interviews, friendship maps, and photographs. | Interpretive description. | Three themes: To tell or not to tell Controlling the flow: the who, when, what, and how of telling Reactions and responses to telling: anticipated and actual |
| Cho et al. (2018) [56] | Canada | Young adults with IBD (18–30 yrs) n = 21 |
To identify the health-related quality of life needs of young adults with IBD. | Interviews. | Constant comparative method. | Four broad categories of needs: Psychosocial needs Informational needs Self-advocacy needs Daily living needs |
| Cooper et al. (2010) [57] | UK | Adults with IBD (30–40 yrs) n = 24 |
To explore beliefs about personal control and self-management of IBD. | Semi-structured interviews. | Systematic framework analysis. | One main theme: Reconciliation of the self in IBD Three sub-themes: Living with uncertainties and contradictions I’ve got it or it’s got me Evaluating images of me and health |
| Czuber-Dochan et al. (2012) [58] | UK | Adults with IBD (27–80 yrs) n = 46 |
To explore fatigue, its impact on daily life and the strategies used to ameliorate the symptom, as described by people with IBD. | Focus group interviews. | Inductive thematic framework. | Five themes: The experience of fatigue Causes of fatigue Managing fatigue Consequences of fatigue Seeking support |
| Czuber-Dochan et al. (2020) [59] | UK | Adults with IBD (17–63 yrs) n = 28 |
To address unmet needs regarding psychosocial aspects of food, eating, and drinking in IBD. | Semi-structured interviews. | Colaizzi’s framework. | Five themes: Personal experience of relationship between IBD and food Managing diet to control IBD and its symptoms Impact of food-related issues on everyday life Acceptance and normalisation of food and its impact in IBD Sources of information and support |
| Daniel (2002) [43] |
Canada | Young adults with IBD (18–24 yrs) n = 5 |
To expand awareness and enhance empirical understanding of the young adult IBD patient’s perspective of living with IBD. | Semi-structured interviews. | Descriptive phenomenological method. | Themes in the study compared with King’s concepts in the Personal System, Interpersonal System and Social System |
| Demirtas (2021) [41] | Turkey | Adults with IBD (25–58 yrs) n = 25 |
To determine the life experiences of patients with IBD. |
Semi-structured interviews. | Phenomenological method. | Three main themes: A flare phase of the disease A remission period Coping behaviours |
| Devlen et al. (2014) [44] | USA | Adult with IBD (20–59 yrs) n = 27 |
To describe the impacts of IBD from a patient perspective. | Focus groups and individual interviews. | Grounded theory. | A conceptual model of impacts including: Immediate impacts Lifestyle impacts Impacts of daily activities Impacts on social and leisure activities Treatment impacts Psychological impacts Impacts on relationships |
| Dibley et al. (2014) [29] | UK | Gay and lesbian people (GLP) with IBD (27–54 yrs) n = 22 |
To explore the parallels between coming out about sexual identity and IBD in order to compare GLP IBD-related concerns with those in the non-gay IBD community and to identify the social and psychological aspects of IBD in GLP. | Semi-structured interviews. |
Pragmatic thematic analysis. | Four central themes: GL sexual activity Receiving health care IBD and GL life Identity and coming out |
| Dibley et al. (2018) [23] | UK | Adults with IBD (23–78 yrs) n = 40 |
To explore the lived experience of stigma in IBD. | Unstructured interviews. | Interpretive hermeneutic phenomenological analysis. | Three constitutive patterns: Being in and out of control Relationships and social support Mastery and mediation |
| Dibley et al. (2019) [28] | UK | Adults with IBD (21 – 64 yrs) n = 18 |
An exploration of the experience and meaning of kinship stigma in people with IBD. | Unstructured interviews. | Interpretive hermeneutic phenomenological analysis. | Three relational themes: Being Visible/Becoming Invisible Being the Disease/Having the Disease Amplification, Suffering, and Loss Constitutive Pattern: Lacking Acknowledgment/Being Acknowledged |
| Dudley-Brown (1996) [42] | Hong Kong | Adults with UC (30–58 yrs) n = 3 |
To describe real life experiences of patients with UC. | Semi-structured interviews. | Phenomenological analysis. | Five themes: Uncertainty surrounding the length of time between exacerbations of symptoms Fear and humiliation accompanying stool incontinence The desperate need to find successful treatment and return to normal life The profound effect of family life, social life, and work The feeling of being controlled by the disease |
| Frohlich (2014) [30] | USA | Adults with IBD (20–56 yrs) n = 14 |
To understand how people with IBD experience stigma because of their disease. | Semi-structured interviews. | Identification of common themes. | Six potentially stigmatising illness sites: Initial diagnosis Romantic relationships Work and school Surgery Medicine Overt stigma |
| García-Sanjuán, et al. (2017) [45] | Spain | Adults with CD (25–83 yrs) n = 19 |
To understand the lived experience of CD. | Interviews. | Colaizzi’s framework. | Five themes: Self-protection against the unknown cause self-training Learning to live with CD Perceived losses associated to CD Relationship with others |
| Hall et al. (2005) [60] | UK | Adults with IBD (28–79 yrs) n = 31 |
To gain a better understanding of the perspectives and experiences of individuals with IBD and a poor quality of life. | Individual semi-structured interviews and focus groups. | Grounded theory. | Emergent core concept: ‘Health-related normality’ |
| Jordan et al. (2017) [61] | UK | Adults with IBD (22–68 yrs) n = 25 |
To explore the experience of people with IBD and elevated symptoms of anxiety and low mood and the type of psychological help they would like. | Semi-structured interviews. | Template analysis. | Two themes related to anxiety: under performance; preventing an accident Two themes related to low mood: lack of understanding; stigma One main theme for type of psychological help desired: Expertise and understanding |
| Larsson et al. (2016) [62] | Sweden | Adults with IBD (29–63 yrs) n = 15 |
To investigate the specific disease-related stress in individuals with IBD, how they cope with this stress and what help is requested from the healthcare. | Interviews. | Content analysis. | Three central areas: Stress: disease-related stress and relations to others Coping: behavioural strategies, social strategies and emotional strategies Need for help or support: instrumental support and emotional support. |
| Lynch and Spence (2008) [46] |
New Zealand | Adolescents and young adults with CD (16–21 yrs) n = 4 |
To explore how youth experience living with recently diagnosed CD. | Semi-structured interviews. | Thematic analysis. | Three themes: Stress as integral to living with CD The paradoxical relationship between fear and hope What helps and what hinders |
| Matini and Ogden (2016) [47] | UK | Adults with IBD (18–39 yrs) n = 22 |
To explore the notion of adaptation in patients with IBD. |
Semi-structured interviews. | Thematic analysis. | Three core themes: Making sense of the illness Impact Feelings Overarching theme: Uncertainty |
| Mikocka-Walus et al. (2020) [53] | UK (n = 13) and Australia (n = 11) | Adults with IBD (20–70 yrs) n = 24 |
To explore the lived experience and healthcare needs of patients with IBD and mild-to-moderate comorbid anxiety and/or depression. | Semi-structured interviews and focus groups. | Thematic analysis (UK) and template analysis (Australia) | Three UK themes: Bidirectional relationship between IBD and mental health, Need for healthcare integration Lack of awareness about the disease Three Australia themes: The ‘vicious cycle’ of IBD and psychosocial health The need for biopsychosocial healthcare integration and The stigma of a hidden disease |
| Moore (2013) [63] | UK | Adult with UC (20 yrs) n = 1 |
To document the author’s lived experience while in the midst of an acute flare-up of UC. | Journal logs. | Autoethnography. | Reflection upon the influence of illness on an athletic body within a sporting subculture. |
| Mukherjee et al. (2002) [48] | UK | Parents with IBD (26–54 yrs) n = 24 |
To identify parents’ views on how IBD affects people in their parenting role; effects parents with IBD have noticed in their children; ways of dealing with any difficulties in parenting; support needed by parents with IBD. | Individual interviews and focus groups. | Framework approach. | Five main themes: Effects on parents Effects on children Ways of dealing with difficulties Support received from services Messages for service providers |
| Nicholas et al. (2007) [49] |
Canada | Children and adolescents with IBD (7–19 yrs) n = 80 |
To understand the lived experience and elements of quality of life as depicted by children and adolescents with IBD. | Semi-structured interview. | Content analysis. | Five themes: Concerns relating to IBD symptoms and treatments Vulnerability and lack of control Perceiving the self negatively as different than peers Benefits of social support Personal resources in coping |
| Norton et al. (2012) [39] | USA | Adults with CD (18–75 yrs) n = 48 |
To understand the impact of CD on various aspects of daily life from the perspective of patients living with CD. | Video diaries and focus groups. | Descriptive summaries. | Impact of CD on various aspects of life: General impact of CD Relationship with provider Psychological impact of CD Social impact of CD Impact of CD on activities Impact of CD on professional life |
| Nutting and Grafsky (2017) [64] | USA | Five adult heterosexual couples with CD (28–40 yrs) n = 10 |
To understand how a partner’s diagnosis of CD is perceived to affect couple relationship functioning and satisfaction, as well as young adult life-cycle transitions. | Interviews (each partner interviewed individually). | Interpretive phenomenological analysis. | Four areas of experiences: Diagnosis Biopsychosocial wellbeing Relationship functioning and satisfaction Life-cycle transitions |
| Lesnovska et al. (2010) [65] | Sweden | Adults with CD (29–83 yrs) n = 11 |
To identify and describe the meaning of quality of life in patients with CD. |
Interviews. | Grounded theory. | Five dominant themes: Self-image Confirmatory relations Powerlessness Attitude toward life Sense of well-being |
| Lesnovska et al. (2016) [66] | Sweden | Adults with IBD (29–83 yrs) n = 30 |
To describe how patients living with IBD experience critical incidents in daily life in relation to their disease and symptoms. | Interviews. | Critical incident technique (inductive). | Five categories: Losing bowel control Having a body that smells Being unable to meet own and others’ expectations Not being believed or seen Experiencing frustration due to side effects and ineffective treatment. One main area describing the overall result: The bowels rule life |
| Purc-Stephenson et al. (2014) [50] |
Canada | Adults with IBD (18–62 yrs) n = 378 |
To explore the positive and negative changes patients with IBD have experienced since diagnosis. | Online survey. | Grounded theory. | Five themes related to positive changes: Interpersonal Relations, Personal Growth, Valuing Life, New Life Paths, and Spiritual Growth. Three themes related to negative changes: Freedom Restrictions, Psychological Side Effects, and Social Isolation |
| Richard et al. (2020) [51] | New Zealand | Adults with IBD (30–79 yrs) n = 18 |
To explore how adults living with IBD in rural New Zealand manage their condition and engage with healthcare providers. | Semi-structured interviews. | Thematic analysis. | Five constructs: Journey to confirming and accepting diagnosis Importance of the relationship with the healthcare team Support from others Learning how to manage IBD Care at a distance |
| Ruan et al. (2020) [67] | China | Adults with IBD (21–58 yrs) n = 16 |
To explore the experiences of body image changes in patients with IBD in China and to describe how those changes influence patients’ perception of body and self. | Semi-structured interviews. | Content analysis. | Six themes: Being a constrained person Being a flawed person Being a disliked person Being an alienated person Being a reconciled person Being a blessed person |
| Ruan and Zhou (2019) [68] | China | Adults with CD (19–68 yrs) n = 31 |
To explore the illness experiences of patients with CD in China and construct an interpretive understanding of these experiences from the perspective of the patients. | Interviews. | Grounded theory. | Four categories: Comparing Struggling Reflecting Realising One core category: Regaining normality |
| Sammut et al. (2015) [69] | Malta | Adults with UC (29–60 yrs) n = 10 |
To explore the experiences of adults living with UC. | Semi-structured interviews. | Interpretative phenomenological analysis. | Three super-ordinate themes: Living with physical discomfort Emotional turmoil in living the experience Social interactions |
| Saunders (2014) [31] | UK | Adults with IBD (18–29 yrs) n = 16 |
To explore how stigma is discursively constructed by young adults, with a focus on the moral underpinnings of the participants’ talk. | Semi-structured interviews. | Rhetorical discourse analysis. | Representations showed both felt stigma and enacted stigma; principally related to the perceived taboo surrounding the symptoms of their condition, which often led to the non-disclosure or concealment of the condition |
| Vejzovic et al. (2018) [70] |
Sweden | Adolescents with UC (13–18 yrs) n = 7 |
To illuminate the meaning of children’s lived experience of UC. | Interviews. | Phenomenological hermeneutical method. | One main theme: Daily struggle to adapt and be perceived as normal Four subthemes: Being healthy despite the symptoms Being healthy despite being afraid Being healthy despite a sense of being different Being healthy despite needing support |
| Wilburn et al. (2017) [71] | UK | Adults with CD (25–68 yrs) n = 30 |
To understand how the lives of people with CD are affected. | Interviews. | Theoretical thematic analysis. | Thirteen main need themes: Nutrition, hygiene, continence, freedom from infection, security, self-esteem, role, attractiveness, relationships, intimacy, clear-mindedness, pleasure, and autonomy |
* Data analysis is outlined as described in the original article. Note: BME = black and minority ethnic, IBD = inflammatory bowel disease, CD = Crohn’s disease, UC = ulcerative colitis.