ECCO IBD Curriculum
10.7. Understands the role of genetic counselling
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.
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.
1. Pre conception counseling, optimal disease control, planning, adherence
2. Drug safety at conception and during pregnancy
3. Management of disease exacerbation during pregnancy, assessment and therapeutic options
4. Management of biologics during pregnancy and post-partum
5. Multidisciplinary decision concerning through the entire pregnancy and important decision like mode of delivery