Background and Aims Inflammatory Bowel Disease (IBD) affects patients and their family members, but most reviews have focused only on patients themselves. This review synthesises evidence on the impact of IBD on family members. Methods A systematic review was undertaken, searching six bibliographic databases, focusing on the impact of IBD on family members, coping strategies, and interventions. A narrative synthesis was conducted. This review was reported following the Preferred Reporting Items for Systematic Reviews (PRISMA). Results 3258 records were identified; 33 papers (2748 participants) were included. Three themes were identified: impact of IBD on family members; coping strategies for family members to overcome the impact of IBD; and the support needed by family members. IBD affects family members' well‐being in many ways, including their emotional well‐being, relationship with the patient, social life, work and finances, and leisure time and travel. Family members use adaptive coping patterns such as acceptance, developing resilience, and emotional support from others. Maladaptive coping patterns such as denial of diagnosis, self‐distraction, and self‐blame were also evident. Family members reported that they needed better information about IBD, support groups, and better access to a counsellor or psychologist. No studies assessed interventions to relieve family members' burden. Conclusions Family members of IBD patients require psychosocial support to facilitate better family function, cohesion, and enhanced coping strategies. Healthcare services should adopt a multidisciplinary care model with a bio‐psycho‐social approach including an IBD nurse, family therapist, and psychologist, to improve quality of life for patients and their families.
Background: Extensive studies have documented the impacts of inflammatory bowel disease (IBD) on patient quality of life, but this study addresses the gap concerning IBD outcomes for the family members of adult IBD patients. Aims: To explore the lived experience of IBD patients and their family members regarding impacts of IBD on family members and their coping strategies. Methods: Semi-structured, in-depth, online interviews were held via Skype, Microsoft Teams and Zoom from February to June 2020, with 12 purposively selected participants, comprising six IBD patients with their six partners. Interviews were audio-recorded and transcribed verbatim, for inductive thematic data analysis. Results: Four main themes emerged during the analysis under the central theme ‘our relationship with IBD, for better or worse’. The theme ‘our relationship’ revealed the impact of IBD on intimate relationships, family planning, role change as partner and carer, and the importance of honest communication. IBD also affected wider relationships with family, children and social life, but teamwork could mediate negative impacts on relationships. Living in constant fear and guilt impacted on emotional wellbeing. Humour and knowledge of IBD reduced negative impacts. IBD had impacts on everyday life (diet, finances and travel) for both patients and partners. Planning for uncertain situations was helpful to reduce restrictions. Conclusions: There are wide-ranging implications for healthcare providers (gastroenterologists, GPs and IBD nurses), social care professionals (psychologists and social workers), family therapists and researchers who could incorporate a bio-psycho-social approach to working with patients with IBD to improve services for individuals who have IBD and their partners and families.
Background IBD significantly impacts individuals’ and their family members’ physical, psychosocial and emotional wellbeing. These then reduce quality of life. Whilst there are studies exploring the impact of IBD on children and their families, little is known about the impact of IBD on family members of adults with IBD. This study explored the impact of IBD on family members of adults diagnosed with IBD, what coping strategies they use and what support they need to manage the psychosocial and emotional burdens associated with supporting patients in managing their IBD. Methods An interpretive phenomenological study conducted, using an individual in-depth, semi-structured online interviews via MS Team, Zoom, or telephone. The interviews were audio recorded and transcribed verbatim. An inductive and deductive reflexive thematic analysis followed the Braun and Clark technique. Results Forty-three participants, including 17 people with IBD and 26 family members (parents, children, siblings, partners), were purposively selected. Three main themes and accompanying subthemes were created: (1) “Life is a roller coaster” (2) “There have been a lot of bridges to cross along the way” and (3) “My life would be better if...” Participants revealed that the impact of IBD on family members has better and worse aspects in terms of emotional wellbeing, relationship, pressure around roles and responsibilities, day-to-day burden, and siblings’ suffering. Positive coping strategies such as creating meaningful social networks, learning through living with the condition, and open communication were used by some. However, many used negative coping strategies such as avoidance, denial, and “battling on” without asking for help. To mitigate the negative impact of IBD, many family members expressed the need for support. This included proactive and effective communication from healthcare professionals, referral to meaningful sources of information and support, and support groups. Conclusion IBD impacts the emotional and psychosocial wellbeing of family members in both positive and negative ways. Some family members were able to use positive coping strategies, however many developed negative coping which affected their daily life. Interventions that support families to communicate better about the impacts of the condition on their wellbeing and/or provide psychosocial support will help family members of people with IBD better cope with disease and have a more fulfilling life. Health professionals need to understand the impact of IBD on family members and support them to cope with the psychosocial and emotional demands of the condition as well as the physical implications.
Background and Aims Inflammatory Bowel Disease (IBD) impacts the individuals’ quality of life and affects all family members considerably. Previous reviews have focused on the impact of IBD on the patient, with limited exploration of the impact of IBD on family members. Therefore, this review aims to synthesise existing knowledge on the impact of IBD on family members, their coping strategies, the support needed, and interventions for family members to prevent and alleviate the burden of IBD. Methods A systematic review using the mixed-method systematic review approach suggested by Joanna Briggs Institute (JBI) and the Preferred Reporting Items for Systematic Reviews (PRISMA) was undertaken. A systematic search of six bibliographic databases: MEDLINE, EMBASE, PsycINFO, CINAHL, British Nursing Index, and Web of Science, was performed in February 2021. The search focused on the impact of IBD on family members and coping strategies and interventions for this population. A narrative synthesis was conducted. Results In total, 3,258 records were identified, from which 33 relevant papers (2,748 participants) were included in the review, with case-control, cross-sectional, and qualitative designs. Synthesis of these papers found three themes: the impact of IBD on family members; the coping strategies for family members to overcome the negative impact of IBD; and the support needed. The IBD affects the family members in term of emotional well-being, fear and concern, relationship and social life, work and financial impacts, and leisure time and travelling. The coping strategy theme shows that family members use adaptive coping patterns such as acceptance, resilience, and emotional support from others. Maladaptive coping patterns such as denial following the initial relief of diagnosis, self-distraction, and self-blame were also used. In the theme ‘support needed’, family members reported the need for improved information about IBD, social support groups, self-help groups, educational meetings, and providing easy access to a counsellor or psychologist to support family members. There have been no studies assessing outcomes of interventions to relieve family members’ burden in the IBD population. Conclusion Our findings suggest that policymakers in healthcare services should emphasise the multidisciplinary professional care model such as a family therapist, IBD nurse, and psychologist. Researchers could incorporate a bio-psycho-social approach into their work on IBD to improve quality of life of both patients and their family members.
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