PERSPECTIVES AND EXPERIENCES OF WOMEN WITH A KIDNEY TRANSPLANT ON ACCESS TO HEALTHCARE- AN INTERNATIONAL QUALITATIVE STUDY
Dr Nicole Scholes-Robertson1, Dr Maleeka Ladhani2, MS Andrea Matus Gonzalez1, Professor Allison Jaure1, Dr Bianca Davidson3, Dr Amanda Vinson4, Ms Louise Lerminiaux5, Prof Germaine Wong1
1The University Of Sydney, Camperdown, Australia, 2South Australia Health and Medical Research Institute,, Adelaide, Australia, 3Division of Hypertension and Nephrology, Department of Medicine, Groote Schuur Hospital, University of Cape Town, Cape Town , South Africa , 4Department of Nephrology, Dalhousie University , Halifax, Canada, 5Consumer representative, , Costa Rica
Aim: To describe the perspectives and experiences of women with a kidney transplant on access to transplantation and associated healthcare.
Background: Globally, more women than men live with chronic kidney disease, though women are less likely to receive a kidney transplant.
Methods: We conducted semi-structured interviews with women over the age of 18 years from 16 countries. Transcripts were analysed thematically.
Results: Thirty-nine women particpated, ranging from 27 to 72 years. Participants were from high (n=21), upper middle (n=6) and lower middle (n=12) income countries and 17 spoke English as a first language. We identified five themes: social vulnerability preventing access (with subthemes of spousal/family dominance in decision making, financial dependence, reversal of role as caregiver), systems unresponsive to individual needs (Inability to meet individual educational needs, unreliable supply of medications, navigating silos within healthcare, exhausted from self advocating), struggling to achieve parenthood (grieving lost opportunity for pregnancy, medicalisation of journey to motherhood, exploring options to have a child, difficulty parenting with chronic illness), broaching gender sensitive topics (loss of intimacy and desire, stigma of mental health impacts, unexpected menopause and menstruation, adjusting to changing body image, embarrassment about incontinence) and yearning for peer connection and support.
Conclusion: Women with a kidney transplant face social, financial and cultural barriers to accessing transplantation. Specific challenges related to post transplant care included reduced access to support for psychosocial wellbeing and body image, women’s health and family planning, which is of priority for recipients. Improved availability of educational resources targeted at women about transplantation, which includes family planning and women’s health will create awareness and empower women to strive for equitable access to care and health outcomes worldwide
Presentation Slides PDF – Click here
Biography:
Nicki is patient partner, physiotherapist and post-doctoral research fellow at The University of Sydney and based in Alice Springs. Her role as patient partner/consumer within the kidney research area is extensive with roles including co-chair Beat-CKD Consumer advisory board, consumer member of the Australasian Kidney Trials network (AKTN) scientific committee, and she is a CI on the NHMRC funded M-FIT, BEAT-BK and CRE-PACT, and a member SONG-GN steering committee. Nicki is a member of Women in Transplantation Pillar III and primarily is involved in qualitative research regarding equity of access and rural and remote health.