Background: Stigma - feeling that you are being treated negatively because of a “mark” that you carry, is known to arise in people with inflammatory bowel disease (IBD). Public perceptions of disease, dirt and hygiene underpin the stigma experience. Goffman originally suggested that those who are “wise” to another's mark will be supportive. Early evidence has indicated that in IBD, close family (or kin) who should be wise to their family member's disease, may not be supportive. This study explored the experience of kinship stigma in people with IBD to reveal what it means when family are not “on your side” and the relevance of this for nurses caring for patients with IBD.
Methods: For this interpretive phenomenological study, participants were recruited from a UK IBD charity. Between July 2015 and April 2016, 18 unstructured interviews were captured, using a digital audio recorder. Participants were asked to describe their experiences of being stigmatized by those closest to them. Transcribed interviews were analysed by a research team using a hermeneutic method to uncover patterns and themes in the narrative data.
Results: One constitutive pattern: Family Acknowledgement As Support, and three themes: Visible/Invisible; I am the disease/I have the disease, and Amplification and Loss were revealed. Failure of family to acknowledge the impact of disease on the patient, including required adjustments to daily routine, family life, diet and activity conveys a lack of understanding and validation of the person with IBD. Household social rules about toilets, meals and bowel control influence the family's support of the person with IBD and whether home is seen as an emotionally safe or unsafe place. The challenges of living with a changeably visible and invisible disease are compounded by an expectation that family should not need “evidence” to prove the presence and impact of IBD. IBD can widen pre-existing cracks in the family structure, amplifying the loss of support and of relationships already being experienced. Inadequate family support may impact on the individual's ability to cope with his/her illness on a broader social scale.
Conclusions: There is no guarantee that family members will be supportive towards the person with IBD. IBD is a family affair, impacting all family members. Lack of support may follow a family history of unsupportive behaviours which become intensified by illness. Kinship stigma appears to be more difficult to experience than other forms of stigma and may have wide-ranging implications for nurses and families caring for someone with a chronic illness. Assessing family response and attitude towards chronic illness may be fundamental for providing appropriate supportive nursing care to the patient and family.