Exploring the occupational engagement experiences of individuals with oculocutaneous albinism: an eThekwini District study

Abstract

Background and aim: The World Federation of Occupational Therapists' urges occupational therapists to recognise when people are being denied the right to participate in occupations and advocate for change. People with oculocutaneous albinism face stigma and discrimination owing to mythical beliefs surrounding the condition. This may negatively affect their engagement in occupations. Therefore, this study aimed to explore the occupational engagement experiences of individuals with oculocutaneous albinism within the eThekwini district.

Method: A qualitative research design, using a phenomenological approach, was chosen to explore the participants lived experiences. Five participants were recruited using snowball sampling. Semi-structured interviews were used to obtain data which was analysed thematically.

Results/ Findings: Data collected yielded three major themes: sense-of-self, barriers to occupational engagement and facilitators to occupational engagement. Four participants demonstrated a positive self-identity, which supported occupational engagement and aided the individual in overcoming barriers. Reasonable accommodations, social- and structural support facilitated occupational engagement, whilst myths and beliefs, physical limitations and the physical environment formed barriers to occupational engagement.

Conclusion: A new finding that emerged, indicated a change in self-perception, with participants adopting positive self-identities that facilitated occupational engagement. This may be attributed to participants belonging to the millennial generation, which is considered open-minded and deviating from tradition.

Key words: Albinism, occupational engagement, barriers and facilitators to occupation. eThekwini District, KwaZulu-Natal, South Africa.