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Public health
Original research
Reactions to and explanations for the birth of a baby with albinism: a qualitative study in Busoga, Uganda
  1. Julie Taylor1,2,
  2. C Bradbury-Jones1,
  3. Peter Ogik3,
  4. Fazira Kawuma3,
  5. Jane Betts4,
  6. Patricia Lund5
  1. 1School of Nursing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
  2. 2Birmingham Women’s and Children’s Hospital NHS Foundation Trust, Birmingham, UK
  3. 3Source of the Nile Union for Persons with Albinism, Jinja, Uganda
  4. 4Advantage Africa, Olney, UK
  5. 5School of Life Sciences, Coventry University, Coventry, UK
  1. Correspondence to Professor Julie Taylor; j.taylor.1{at}bham.ac.uk

Abstract

Objectives Babies born with the genetic condition albinism lack pigment in their hair, skin and eyes due to compromised melanin production. This leads to poor vision and the risk of early death due to skin cancer. In Uganda, one of the least developed countries in the world, their lack of pigmentation makes them very different in appearance within their communities. Local explanations of albinism include links to witchcraft and the supernatural. We aimed to explore reactions to the birth of a baby with albinism in Uganda.

Design Secondary analysis of birth stories derived from qualitative interviews and focus group discussions in sharing circles.

Setting Interviews took place in the Busoga subregion (kingdom) in the eastern part of Uganda.

Participants Seventy-three (73) participants took part in eight sharing circles (n=56) and 17 individual interviews. Participants included people with albinism, parents of people with albinism and a range of other interested parties, including local leaders and teachers.

Results Reactions were generally those of shock and rejection, although cases of acceptance were also recorded. The varied explanations given to account for this unexpected event included accounts involving witchcraft, ghosts, animal familiars and religion, as well as genetics. In a framework surmising that someone must possess a dark skin to be intrinsically valued in African societies a baby with albinism does not fulfil this requirement of ‘personhood’. The mother was often blamed for having produced some ‘thing’ that is not a proper person.

Conclusions We argue that a biomedical explanation, although unlikely to displace other understandings, helps to establish a baby with albinism as a real person with a genetic difference, and hence fosters greater acceptance.

  • qualitative research
  • genetics
  • public health
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2020-040992

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    Footnotes

    • Twitter @bulawayojulie

    • Contributors PL led the study, PO and FK were responsible for recruitment and the qualitative data generation, supported by JB and PL. JT, PL and CB-J undertook the secondary analysis. Interpretations of culture and context were provided by PO and FK. All authors contributed to the manuscript and read and approved the final version.

    • Funding This research was supported by FIRAH—Fondation Internationale de la Recherche Appliqué, grant number: FIRAH code AP2014-47. URL to their website (http://www.firah.org/, www.firah.org).

    • Competing interests None declared.

    • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

    • Patient consent for publication Not required.

    • Ethics approval Ethical approval was granted by Coventry University Research Ethics Committee and by the Minister for Disabled Persons, Jinja, Uganda as per local in-country protocol at the time of data collection. All participants gave both written and verbal informed consent. Although participants wanted to be identified to give voice to their stories, as a research team we are mindful of the current context of violence and danger towards people with albinism and have not identified their names or exact locations.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement Data are available on reasonable request to researchers who meet the criteria for access to confidential data from FIRAH - International Foundation of Applied Disability Research: http://www.firah.org/index.php?option=com_content&view=article&id=30&Itemid=95&lang=en. Address: 14 rue de la Tombe Issoire -75014 Paris - France. Phone: +33 (0)1 43 12 19 21. Email: contact@firah.org.