Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

African Journal of Disability


 
 
Field Value
 
Title Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study
 
Creator Likumbo, Naomi de Villiers, Tania Kyriacos, Una
 
Subject Nursing; Midwifery; Disabiliity albinism; albinism in Africa; albinism in Malawi; albinism killings; children living with albinism; maternal experiences; oculocutaneous albinism; stigma and albinism
Description Background: Albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 Malawians of all ages are affected. Children with these features face extreme forms of human rights abuses, even death.Objectives: This study aims to describe Malawian mothers’ experiences, perceptions and understanding of raising children with albinism (CWA).Methods: The study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. Mothers, 18 years and older, who had given birth to a CWA and who attended the dermatology clinic of a local public hospital participated. An interview guide used during standardised, open-ended interviews was translated from English to Chichewa using forward and backward translation. Interviews were conducted in Chichewa, audio recorded, transcribed and forward and back translated from English to Chichewa. Thematic data analysis was employed.Results: The mean age of participants (N = 10) was 33 years; two had albinism. Emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. Mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism.Conclusion: In our limited study, mothers’ self-reported experiences of raising CWA in Malawi highlight the need for educational programmes on albinism at national level, particularly for families with a CWA, health professionals and educators.
 
Publisher AOSIS
 
Contributor Not applicable
Date 2021-04-20
 
Type info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion — Qualitative descriptive
Format text/html application/epub+zip text/xml application/pdf
Identifier 10.4102/ajod.v10i0.693
 
Source African Journal of Disability; Vol 10 (2021); 11 pages 2226-7220 2223-9170
 
Language eng
 
Relation https://ajod.org/index.php/ajod/article/view/693/1539 https://ajod.org/index.php/ajod/article/view/693/1538 https://ajod.org/index.php/ajod/article/view/693/1540 https://ajod.org/index.php/ajod/article/view/693/1537
 
Coverage Kenya Chronological Mothers 18 years and older of children with albinism who attended the QUECH dermatology clinic and were willing to participate voluntarily. Participants who could speak English or Chichewa fluently were included
Rights Copyright (c) 2021 Naomi Likumbo, Tania de Villiers, Una Kyriacos https://creativecommons.org/licenses/by/4.0