Grieving multiple losses: Experiences of intimacy and sexuality of people living with inflammatory bowel disease. A phenomenological study

被引:3
作者
Fourie, Simona [1 ,2 ]
Norton, Christine [2 ]
Jackson, Debra [2 ,3 ]
Czuber-Dochan, Wladyslawa [2 ]
机构
[1] Univ Oxford, Radcliffe Dept Med, Headley Way, Oxford OX3 9DU, England
[2] Kings Coll London, Florence Nightingale Fac Nursing Midwifery & Pall, London, England
[3] Univ Sydney, Fac Med & Hlth, Sydney, NSW, Australia
关键词
advanced practice; chronic illness; gastroenterology; holistic care; nurse; patient perspectives; phenomenology; quality of life; sexuality; COLORECTAL-CANCER; INTERVIEWS; IBD;
D O I
10.1111/jan.15879
中图分类号
R47 [护理学];
学科分类号
1011 ;
摘要
AimTo explore patient experiences of intimacy and sexuality in those living with inflammatory bowel disease.DesignAn interpretative phenomenological study guided by van Manen's framework. Thematic analysis was conducted through interpretation and reflection on four existential domains: body, relationships, time and space.MethodsData were collected during 2019-2021 from 43 participants via face-to-face or telephone interviews, as well as anonymous collection of narratives submitted via Google Forms.ResultsFour themes were identified: Sexuality as lived incompleteness was the overarching theme representing the essence of the experiences of intimacy and sexuality. This theme covered the four main themes: Otherness of the body, Interrupted connectedness, Missing out on life fullness and Fragmented openness and each corresponded to an existential domain. Intimacy and sexuality are negatively affected by inflammatory bowel disease, with impact on quality of life. Patients experienced grieving multiple losses, from body image and control, to choice of partners and future opportunities. The four domains were difficult to separate and a close inter-relationship between each domain was acknowledged.ConclusionsA model was developed to draw new theoretical insights to understanding the relationship between sexual well-being and psycho-emotional distress similar to grief.ImpactFirst qualitative study to explore intimacy and sexuality experiences of those living with inflammatory bowel disease.Illness impact on sexuality has negative psycho-emotional implications as a result of losing the old self and capacity to have the desired relationships/sex life.A theoretical model was developed in an attempt to illustrate the close relationship of intimacy, sexuality and psycho-emotional well-being.Patient or Public ContributionPatients were involved in the study design.
引用
收藏
页码:1030 / 1042
页数:13
相关论文
共 32 条
  • [1] The grieving animal: Grief as a foundational emotion
    Brinkmann, Svend
    [J]. THEORY & PSYCHOLOGY, 2018, 28 (02) : 193 - 207
  • [2] Crafting Stories in Hermeneutic Phenomenology Research: A Methodological Device
    Crowther, Susan
    Ironside, Pam
    Spence, Deb
    Smythe, Liz
    [J]. QUALITATIVE HEALTH RESEARCH, 2017, 27 (06) : 826 - 835
  • [3] Critical appraisal of rigour in interpretive phenomenological nursing research
    de Witt, Lorna
    Ploeg, Jenny
    [J]. JOURNAL OF ADVANCED NURSING, 2006, 55 (02) : 215 - 229
  • [4] Doka K., 1989, DISENFRANCHISED GRIE, P3, DOI DOI 10.1080/02682629908657467
  • [5] Fourie S., 2022, INTERPRETIVE PHENOME
  • [6] 'These Discussions Aren't Happening': Experiences of People Living with Inflammatory Bowel Disease and Talking About Sexual Well-being with Health Care Professionals
    Fourie, Simona
    Norton, Christine
    Jackson, Debra
    Czuber-Dochan, Wladyslawa
    [J]. JOURNAL OF CROHNS & COLITIS, 2021, 15 (10) : 1641 - 1648
  • [7] Living with Inflammatory Bowel Disease: A review of qualitative research studies
    Fourie, Simona
    Jackson, Debra
    Aveyard, Helen
    [J]. INTERNATIONAL JOURNAL OF NURSING STUDIES, 2018, 87 : 149 - 156
  • [8] Goffman Erving., 1959, PRESENTATION SELF EV
  • [9] The First European Evidence-based Consensus on Extra-intestinal Manifestations in Inflammatory Bowel Disease
    Harbord, Marcus
    Annese, Vito
    Vavricka, Stephan R.
    Allez, Matthieu
    Barreiro-de Acosta, Manuel
    Boberg, Kirsten Muri
    Burisch, Johan
    De Vos, Martine
    De Vries, Anne-Marie
    Dick, Andrew D.
    Juillerat, Pascal
    Karlsen, Tom H.
    Koutroubakis, Ioannis
    Lakatos, Peter L.
    Orchard, Tim
    Papay, Pavol
    Raine, Tim
    Reinshagen, Max
    Thaci, Diamant
    Tilg, Herbert
    Carbonnel, Franck
    [J]. JOURNAL OF CROHNS & COLITIS, 2016, 10 (03) : 239 - 254
  • [10] Helland Y, 2017, MUSCULOSKELET CARE, V15, P131, DOI 10.1002/msc.1149