Femke Bannink

Community Knowledge, Beliefs, Attitudes, and Practices towards Children with Spina Bifida and Hydrocephalus in Uganda.

This article describes the findings of a qualitative study on knowledge, beliefs, attitudes, and practices towards children with spina bifida and hydrocephalus in four regions of Uganda. Focus group discussions and semi-structured interviews were held with parents of children with spina bifida and hydrocephalus, policy-makers, and service providers. Our findings describe how negative knowledge, beliefs, attitudes, and practices create barriers to treatment and inclusion of children with spina bifida and hydrocephalus and their parents in Uganda. The findings show how knowledge, beliefs, attitudes, and practices evolve over time, are both similar and differ in the various regions, and become more conducive towards accessing treatment and achieving inclusion. Sensitisation and early intervention including parents and service providers in dissemination of knowledge, rehabilitative care to set the trend for positive change and support, as well as longitudinal studies of children with spina bifida and hydrocephalus and their parents are recommended.

Parental stress and support of parents of children with spina bifida in Uganda

Background Children with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. This study explores parental stress and support of parents of children with spina bifida in Uganda. Objectives The study aimed to explore perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them. Methods A total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child’s daily functioning level and parental stress levels. Results Parental stress was high in our study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman’s correlation coefficient [ρ] = −0.245), continence (ρ = −0.182), use of clean intermittent catheterisation (ρ = −0.181) and bowel management (ρ = −0.213), receiving rehabilitative care (ρ = −0.211), household income (ρ = −0.178), geographical region (ρ = −0.203) and having support from another parent in taking care of the child (ρ = −0.234). Linear regression showed parental stress was mostly explained by the child’s inability to walk (β = −0.248), practicing bowel management (β = −0.468) and having another adult to provide support in caring for the child (β = −0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F = 5.467*; Parent–Child Dysfunctional Interaction, F = 8.815**; Difficult Child score, F = 10.489**). Conclusion Parents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed.

Prevention of spina bifida: Folic acid intake during pregnancy in Gulu district, northern Uganda

Introduction The intake of folic acid before conception and during the first trimester of pregnancy can prevent spina bifida. This paper describes folic acid intake in women in Gulu district in northern Uganda. Methods Structured interviews were held with 394 women attending antenatal care (ANC), 15 mothers of children with spina bifida, and 35 health workers in 2012 and 2013. SPSS16 was used for data analysis. Results 1/4 mothers of children with spina bifida took folic acid during late pregnancy, none preconception. None had knowledge about folic acid and spina bifida prevention. 33.5% of women attending ANC had ever heard about spina bifida, 1% knew folic acid intake can prevent spina bifida. 42.4% took folic acid supplements in late pregnancy, 8.1% during the first trimester, none preconception. All women said to have eaten food rich in folic acid. None were aware about fortified foods. 7% of health workers understood the importance of early folic acid intake. All health workers recommended folic acid intake to women attending ANC. 20% of the health workers and 25% of the women said folic acid supplements are not always available. Conclusion Folic acid intake is limited in northern Uganda. This is attributed to limited education and understanding of women and health workers about the importance of early folic acid intake, late presentation of women at ANC, poor supply chain and dilapidated health services caused by war and poverty. A combination of food fortification, sensitization of health workers, women, and improving folic acid supply is recommended.

Health related quality of life in children with spina bifida in Uganda

BACKGROUND Studies on health related quality of life (HRQOL) of children with disabilities in low income countries are limited. OBJECTIVE To inform interventions for children with spina bifida in low income countries, HRQOL of children with spina bifida and siblings, predictors, relationships between HRQOL and parental stress in Uganda were examined. METHODS Demographic, impairment, daily, social functioning data, and HRQOL using the KIDSCREEN-10 were collected from 39 children, 33 siblings, and 39 parents from a cohort of families of children with spina bifida. T-tests, correlations, analysis of variance and regression analysis were used to compare means between children with spina bifida and their siblings, understand relationships between variables, and identify predictors of HRQOL. RESULTS Children with spina bifida (N = 39) had lower HRQOL compared to their siblings (N = 33) (t = -3.868, p < .001 parental; t = -3.248, p = .002 child ratings). Parents (N = 39) indicated higher parental stress for their child with spina bifida (t = 2.143, p = 0.036). HRQOL child outcomes were predicted by the presence of hydrocephalus (β = -.295, p = 0.013) for children with spina bifida, and daily functioning levels (β = .336, p = 0.038), and parental support (β = .357, p = 0.041) for siblings specifically. Parent rated HRQOL outcomes were predicted by parental distress (β = -.337, p = 0.008), incontinence (β = .423, p = 0.002), and daily functioning levels (β = .325, p = 0.016) for children with spina bifida. CONCLUSIONS To improve HRQOL investment in neurosurgical care, community based rehabilitation, incontinence management, and parental support are required. A combination of child friendly semi-structured and creative research methods are recommended to study HRQOL.

Perspectives of alcohol treatment providers and users on alcohol addiction and its facilitating factors in Uganda and Belgium

Abstract Background: Although conceptualisation of addiction varies with time and culture, literature on intercultural studies between high and low income countries is scarce. This article uses Diagnostic and Statistical Manual of Mental Disorders (DSM)-5 guidelines on diagnosis of Alcohol Use Disorder (AUD) and the Capability Opportunity Motivation – Behaviour (COM-B) model to explore perspectives on alcohol addiction and its facilitating factors in Uganda and Belgium. Method: Sixty qualitative interviews (40 with service providers and 20 service users) were administered in four alcohol treatment centres, two in Uganda and two in Belgium. Interviews were transcribed and analysed thematically using Nvivo software. Result: While addiction was primarily regarded as a disease enabled by capability factors (affordability and the absence of life and social skills) by Belgian respondents, many Ugandans viewed it as a moral or criminal issue; motivated by the varied roles of informal alcohol use amidst weak restrictions. Opportunity-related factors including; acceptability, availability, media influence, cultural/religious beliefs and practices and peer influence were recognised as facilitating factors in both countries, while stigma was equally prevalent. Conclusion: Interventions in Uganda could explore strengthening legislation and research on utilisation of the well-entrenched religious and cultural institutions to encourage alternatives to alcohol use. In Belgium, promotion of life and social skills, alcohol regulation in educational institutions and other demand reduction strategies seem essential to delay the onset of (mis)use. In both societies; general reduction of opportunities for access, early intervention, programmes for young persons and prevention of stigma through awareness-raising can be explored for mitigation of AUD.