Factors contributing to defaulting scheduled therapy sessions by caregivers of children with congenital disabilities

Abstract

Background Defaulting scheduled rehabilitation therapy may result in increased adverse outcomes such as permanent disability and increased healthcare costs. Concomitantly, there is evidence to suggest that early and continued rehabilitation of children with congenital disabilities can improve outcomes significantly. This study was conducted to determine factors contributing to caregivers' defaulting scheduled rehabilitation therapy sessions. Methods A descriptive cross sectional study was carried out at Chitungwiza Central Hospital, a tertiary facility offering in and outpatient rehabilitation services in Zimbabwe. Caregivers of children who had congenital disabilities (N=40) and who had a history of defaulting treatment but were available during the data collection period responded to an interviewer administered questionnaire. Data were analysed for means and frequencies using STATA 13. ResultsFactors that contributed to caregivers defaulting scheduled therapy included economic constraints (52%), child related factors (43%), caregiver related factors (42%), service centred factors (30%) and psychosocial factors(58%). Majority of the caregivers (98%) were motivated to attend therapy by observable improvements in their children. Other motivators were incentives given in the rehabilitation department (45%), availability of rehabilitation personnel to provide the required services (48%) and psychosocial support from fellow caregivers, families and the rehabilitation staff (68%). Although all the caregivers could not distinguish occupational therapy from physiotherapy services they all reported that therapy was important. Conclusions A combination of psychosocial, economic, child centred and service centred factors contributed to caregivers defaulting scheduled therapy. Interventions that may potentially improve caregiver attendance to scheduled therapy include community outreach services, efficient rehabilitation service provision at the hospitals, and facilitation of income generating programmes for caregivers.

Barriers and facilitators to healthcare access for children with disabilities in low and middle income sub-Saharan African countries: a scoping review

“…Although there were 29 countries in Africa that allocated less than $50 per person to healthcare, papers included in this study were from only nine Sub-Saharan countries. Of the 15 articles discussed in this review, four papers reported on Ethiopia [11][12][13], two on Zimbabwe [14,15], two on Malawi [16,17], two on Cote d'Ivoire [18,19], one on Rwanda and Uganda [20], one on Uganda [21], one on Kenya [22], one on Zambia [23] and one on Nigeria [24] (Table 1 in Appendix).…”

“…Stigma, including experienced stigma and fear of stigmatization, was a reported barrier in five papers. High levels of stigma were reported by many families of children with disabilities, preventing them from allowing their children to access health care and proper medical treatment [11,12,15,23] . Caregivers in Ethiopia, Zimbabwe, and Zambia expressed concerns about being treated poorly by others and how this caused them to decide to hide their child's condition instead of seeking treatment [11,12,15,23].…”

“…High levels of stigma were reported by many families of children with disabilities, preventing them from allowing their children to access health care and proper medical treatment [11,12,15,23] . Caregivers in Ethiopia, Zimbabwe, and Zambia expressed concerns about being treated poorly by others and how this caused them to decide to hide their child's condition instead of seeking treatment [11,12,15,23]. A health extension worker in Ethiopia noted that caregivers were often worried about being treated differently, feeling ashamed or embarrassed about their child's condition, and made efforts to keep their child's condition a secret [11].…”

“…One participant in Uganda reported a case where a nurse would not provide HIV related services such as blood tests to a girl with a physical disability due to misconceptions that youth with physical disabilities were not sexually active [20]. Furthermore, caregivers reported that they were sometimes rejected by healthcare workers and their children did not receive treatment because some healthcare providers believed that these children could not be treated [13,15,23] . A study by Bannick and Stroeken [21] found that parents of CwDs were often discouraged from seeking healthcare services for their child as it was perceived as a waste of money.…”

“…Despite the fact that there were challenges and barriers that prevented accessing healthcare by CwDs, a positive attitude among family and community members can encourage caregivers to seek treatment for their children. (2015) found that when a child showed visible and observable health improvements, such as surgery recovery or significant rehabilitation progress, the community's attitudes changed and became more positive and supportive [15,21].…”