Family perceptions of quality of care and HIV related stigma in a nutrition rehabilitation unit in Lilongwe, Malawi

Abstract

BACKGROUND: HIV-infected and uninfected severely malnourished children are managed within residential nutrition rehabilitation units (NRUs). The potential impact of stigma on the quality of care provided for these children in a high HIV prevalence setting has not previously been examined. METHODS: A grounded theory approach was used to analyse qualitative data from participant observation and in-depth interviews 15 with children's carers. RESULTS: The study took place at the NRU within Kamuzu Central Hospital, a large referral hospital in Lilongwe, Malawi. The prevalence of HIV within children in the NRU at KCH is 17%. The analysis generated four themed categories. \'We have different blood\' referring to staff attitudes and underperformance, \'What wrong did I do to God?\' referring to stigma and chronic illness, \'The milk is not enough\' referring to resources available in the NRU: milk, medicine, space, hygiene, and \'My other children back home\' referring to the carer's multiple responsibilities and challenges associated with remaining in the NRU. All carers reported concern over their divided responsibilities between home and hospital while staying in the NRU for several weeks. Carers reported that some staff members were helpful, but others were lazy, disrespectful, or even verbally abusive. Carers also felt that the care provided within the NRU was not holistic; that they had to move between wards to gain care for themselves and their children and that carers were not given adequate food and basic hygiene items. Carers sometimes perceived it as a personal or spiritual failing when their children did not recover, especially where underlying chronic illness was involved. CONCLUSIONS: Provision of more holistic family care, where carers are educated about and involved in the care plan development and implementation for both HIV-infected and uninfected malnourished children could help to improve quality of life and care outcomes in NRUs