When Family Don’t Acknowledge: A Hermeneutic Study of the Experience of Kinship Stigma in Community-Dwelling People With Inflammatory Bowel Disease

Abstract

Recent evidence suggests that kinship stigma—the experience of being or feeling stigmatized by family members—arises in the stories of people with inflammatory bowel disease (IBD). Adopting Goffman’s definition of stigma as “an attribute which is deeply discrediting,” we used hermeneutic (interpretive) phenomenology to further explore the meaning of kinship stigma for people with IBD and reveal its significance. In total, 18 unstructured interviews took place in participants’ own homes in the United Kingdom, between July 2015 and April 2016. Transcripts were analyzed using a hermeneutic method to reveal three relational themes and one constitutive pattern. Referring to relevant literature, the presence and impact of kinship stigma on people with IBD is revealed. Kinship stigma—experienced as and meaning a lack of acknowledgment—may have wide-ranging implications for health and social care professionals caring for persons with IBD or other chronic illness and their families.

A Feeling of Otherness: A Qualitative Research Synthesis Exploring the Lived Experiences of Stigma in Individuals with Inflammatory Bowel Disease

“…Yet when family and friends were unable or unwilling to provide empathy or themselves showed stigma, there was an increased sense of stigma burden which further impeded wellbeing and placed a heavy strain on those important relationships. This supports the suggestion that kinship stigma (negative or discriminatory attitudes towards individuals by family members and their closest relationships) can have an intense emotional impact [23,28]. Additionally, perceived or enacted stigma from healthcare professionals was also experienced as being particularly distressing.…”

“…Qualitative research is well positioned for developing an understanding of the personal, contextualised, and nuanced causes, impacts of, and responses to stigma in those with IBD [27]. An emerging qualitative literature has begun to explore the lived experiences of stigma in IBD [23,[28][29][30][31]. However, given the impact of stigma on wide-ranging aspects of life, the concept is also apparent within broader accounts of illness experiences in IBD where stigma was not the primary focus.…”

On the path together: Experiences of partners of people with multiple sclerosis of the impact of lifestyle modification on their relationship

“…Heidegger's interpretive phenomenology guided the study (Horrigan-kelly, Millar, & Dowling, 2016). Heidegger's philosophy explores the meaning of what it is to be human and experience life in the context of time and place where the person is always within, rather than separate from, their experiences (Dibley, Williams, & Young, 2019). This philosophy informs a methodology where the participants' experiences do not occur in isolation and the researcher, with their own experiences, assumptions and prejudices, is thus a necessary part of the research methodology.…”

Comorbid Suffering: Breast Cancer Survivors in South Africa

“…Her experiences clearly reflect what Goffman (1986) described as "courtesy stigma," where an individual's stigmatized identity is transferred to their family and social network. Elsewhere, researchers have also described the experience of patients being or feeling stigmatized by family member as "Kinship Stigma" (see Dibley et al, 2019).…”