Barriers in Cleft Service Access in Sub-Saharan Africa: A Thematic Analysis of Practical Needs of Rural Families

Abstract

Objective

To explore the experiences and perceptions of barriers of parents and family members of patients with cleft lip and palate in accessing cleft services in remote northwest Nigeria.

Design

Face-to-face semi-structured audio recorded interviews were used to obtained qualitative textual data. Thematic analysis using interpretative descriptive techniques was employed to understand the participants’ lived experiences with barriers and accessibility to cleft services.

Setting

Participants were from Sokoto, Kebbi and Zamfara states in remote northwest, Nigeria.

Participants

Consisted of 22 caregivers (17 parents and 5 extended family members) were purposively sampled between 2017 and 2020

Main outcome measures

Barriers experienced while accessing cleft services were identified during thematic analysis.

Result

Over three quarter of the respondents had patients with both cleft lip and palate and without any previous family history (n = 20). About two-thirds of the participants (n = 15) were females. Most of the interviews were conducted before the surgeries (n = 15).

Five themes emerged

lack of information, financial difficulty, misrepresentation from health workers, multiple transportation and previous disappointment.

Conclusions

Areas of poor awareness, misinformation from primary health care workers, financial hurdles, multiple transportation logistics and others were identified. Aggressive broadcasting of information through radio, timely treatment and collaboration with influential religious leaders were emphasized. Support, grants and subsidies from government and voluntary agencies are encouraged to mitigate the huge out of pocket cost of cleft care in the region.