“I Didn't Feel Like I Was a Person Anymore”: Realigning Full Adult Personhood after Ostomy Surgery

Ramírez, Michelle; Altschuler, Andrea; McMullen, Carmit K.; Grant, Marcia; Hornbrook, Mark C.; Krouse, Robert S.

doi:10.1111/maq.12095

Cited by 25 publications

(56 citation statements)

References 41 publications

(75 reference statements)

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“…Our work complements and extends previous research which suggested people with an ileostomy report post-operative pain, shock at the physical impact of surgery, vigilance with regard to bodily functions and the working of the appliance (Danielsen et. al., 2013a;Kelly, 1992;Ramirez, 2014;Notter & Burnard, 2006). What our analysis adds is: closer analysis of participants' explicit attendance to changing sense of self, more detailed delineation of some of the psychological processes involved and consideration of the range of possible impacts on identity.…”

Section: Discussionmentioning

confidence: 99%

“…Three which come quite close to ours in terms of research question and orientation are: Danielson et al (2013a), Ramirez et al (2014), Kelly (1992) interviews. This does indeed show the complexity of comparing across studies.…”

mentioning

confidence: 99%

“…While disclosing stoma status has been likened to 'coming out' as gay (Kelly, 1992) or disclosing status as a person living with HIV or with an artificial limb (Ramirez et al, 2014), some adults living with stomas may feel reasonably relaxed about disclosure (Ramirez et al, 2014). One group of CHALLENGES FOR PERSONS WITH AN ILEOSTOMY 25 older women agreed disclosure might be harder for young people, but they felt relaxed about it themselves (Ramirez et al, 2014). Thus, the finding that Kim and Marianne felt uncertainty and anxiety around disclosure adds depth to the current picture and highlights potential need for support in this area.…”

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confidence: 99%

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The psychological challenges of living with an ileostomy: An interpretative phenomenological analysis.

Smith¹,

Spiers²,

Simpson³

et al. 2017

Health Psychology

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CHALLENGES FOR PERSONS WITH AN ILEOSTOMY 2The psychological challenges of living with an ileostomy:an interpretative phenomenological analysis Abstract Objectives: Ileostomy, in which the small intestine is re-directed out of an abdominal wall so that waste is collected using a bag, is used to treat conditions including Inflammatory Bowel Disease and colorectal cancer. This paper reports an in depth idiographic analysis of the experience of living with an ileostomy. Methods: 21 participants took part in semi-structured interviews about their lives and relationships. Those interviews were transcribed verbatim and analysed using the experiential qualitative methodology Interpretative Phenomenological Analysis (IPA). Results: Two super-ordinate themes arose from the data: Ileostomy's intrapersonal impact; the impact of ileostomy on relationships with others. We found that ileostomy may destabilise the sense of self, disrupt body image, and alter experience of age and sexuality. Other participants were able to employ their illness to positively reframe the self. Disclosure of ileostomy status was difficult for some. Intimate and friend relationships were often challenged by stoma status, whilst other family relationships were largely characterised as supportive. Conclusions: Ileostomy may impact upon both intra and interpersonal aspects of the lives of those who live with it, in both negative and positive ways. Consequently, the sense of self can appear challenged, and relationships with partners, family members and friendships could be causes of distress. On the other hand, some partners were supportive, and children were found to be sources of comfort.Keywords: Ileostomy; phenomenology; qualitative; relationships; selfThe psychological challenges of living with an ileostomy:an interpretative phenomenological analysis Ileostomies, in which the small intestine is re-directed out of an opening in the abdominal wall so that waste is collected in a bag, treat various conditions including Crohn's disease, ulcerative colitis, and bowel cancer. It is estimated that nearly 40,000 ileostomies are performed in the US every year, (Husain & Cataldo, 2008), while more than 9,000 ileostomy operations are carried out in the UK annually (NHS, 2014).Prior research has explored life with a range of related procedures: ileostomies, colostomies, and urostomies, collectively known as stomas (eg. Bray, Callery, & Kirk, 2012).The confluence of elements that lead to and follow stoma surgery, which often includes severe pre-and occasionally post-operative illness can be psychologically challenging groups. They contacted the second author if they wanted to take part, and were sent an information sheet giving the details of the study. Twenty-one people living with an ileostomy were interviewed. We recruited a purposive stratified sample to ensure a balanced representation of age and gender and thus we have a relatively large sample for an IPA study.Ethics and Data collection. The study was given ethical clearance by the relevant university b...

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Section: Discussionmentioning

confidence: 99%

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confidence: 99%

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confidence: 99%

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The psychological challenges of living with an ileostomy: An interpretative phenomenological analysis.

Smith¹,

Spiers²,

Simpson³

et al. 2017

Health Psychology

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“…The wider set of articles concerned with meanings and experiences of cancer diagnosis, treatment and the spread or recurrence of cancer also focused on how people living with the effects of cancer surgery realigned personhood (Ramirez et al . ), regained wholeness (Crompvoets ) and in some cases integrated test results into ‘technoscientific illness identities’ (Bell and Kazanjian , Jordens et al . , Sulik ).…”

Section: Living With and Beyond Cancermentioning

confidence: 99%

The sociology of cancer: a decade of research

Kerr

Ross

Jacques

et al. 2018

Sociology Health & Illness

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Biomedicine is often presented as the driving force behind improvements in cancer care, with genomics the latest innovation poised to change the meaning, diagnosis, treatment, prevention and lived experience of cancer. Reviewing sociological analyses of a diversity of patient and practitioner experiences and accounts of cancer during the last decade (2007–17), we explore the experiences of, approaches to and understandings of cancer in this period. We identify three key areas of focus: (i) cancer patient experiences and identities; (ii) cancer risk and responsibilities and (iii) bioclinical collectives. We explore these sociological studies of societal and biomedical developments and how sociologists have sought to influence developments in cancer identities, care and research. We end by suggesting that we extend our understanding of innovations in the fields of cancer research to take better account of these wider social and cultural innovations, together with patients, activists' and sociologists' contributions therein.

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“…7 Our previous research suggests that permanent ostomies are associated with body image disturbance, sexual dysfunction, and relationship problems, resulting in poor overall HRQOL. 8–15 …”

Section: Introductionmentioning

confidence: 99%

Sexual Function and Health-Related Quality of Life in Long-Term Rectal Cancer Survivors

Sun

Grant

Wendel

et al. 2016

The Journal of Sexual Medicine

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Introduction Sexual dysfunction is a treatment sequela in rectal cancer (RC) survivors. Differences in health-related quality of life (HRQOL) may occur based on ostomy status (permanent ostomy versus anastomosis). Aim To describe alterations in sexual function and HRQOL based on ostomy status in long-term (≥ 5 years) RC survivors. Methods RC survivors with an ostomy (N=181) or anastomosis (N=394) were surveyed using validated HRQOL and functional status tools. We compared sexuality outcomes between the ostomy and anastomosis group, and reported differences adjusted for clinical and demographic characteristics. Qualitative data from one open-ended question on survivors’ greatest challenges since their surgery were analyzed to explore sexuality, symptoms, and relationships. Main Outcome Measures Whether sexually active, satisfaction with sexual activity, and select sexual dysfunction items from the Modified City of Hope Quality of Life-Ostomy (mCOH-QOL-O). Results Survivors with a permanent ostomy were more likely to have been sexually inactive after surgery if it occurred before year 2000, and experience dissatisfaction with appearance, interference with personal relationships and intimacy, and lower overall HRQOL. Female RC survivors with an ostomy were more likely to have problems with vaginal strictures and vaginal pain after surgery that persisted at the time of survey (5+ years later). Radiation treatment, tumor stage, soilage of garments in bed, and higher Charlson-Deyo co-morbidity scores were negatively associated with outcomes. Six qualitative themes emerged: loss of and decreased sexual activity; psychological issues with sexual activity, physical issues with sexual activity; partner rejection; ostomy interference with sexual activity; and positive experiences with sexuality. Conclusions Sexual dysfunction is a common long-term sequela of RC treatment, with more problems observed in survivors with a permanent ostomy. This warrants widespread implementation of targeted interventions to manage sexual dysfunction and improve HRQOL for these survivors.

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“I Didn't Feel Like I Was a Person Anymore”: Realigning Full Adult Personhood after Ostomy Surgery

Cited by 25 publications

References 41 publications

The psychological challenges of living with an ileostomy: An interpretative phenomenological analysis.

The psychological challenges of living with an ileostomy: An interpretative phenomenological analysis.

The sociology of cancer: a decade of research

Sexual Function and Health-Related Quality of Life in Long-Term Rectal Cancer Survivors

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