Adaptive adjustment to the needs of families caring for children and adolescents with physical disabilities in north-eastern Tanzania: a grounded-theory study.

BACKGROUND: Family interactions, which are always multi-faceted, are complicated further by family members with disabilities. In resource-poor settings, policies and programmes that address the needs of and challenges faced by families are often inaccessible or unavailable. Approximately 13% of the families in Tanzania have at least one member with a disability, yet family-centred research on caring for disabled children and adolescents is scarce in this context. OBJECTIVE: The aim is to explore the needs and challenges faced by families that care for children and adolescents with physical disabilities in the Kilimanjaro Region of north-eastern Tanzania. METHODS: This qualitative study had a constructivist grounded-theory design. In-depth interviews, using a semi-structured interview guide based on the social-capital framework, were conducted with 12 female participants aged between 24 and 80. A conceptual model of family needs, inspired by Maslow's hierarchy of needs, informed the analysis. RESULTS: Challenging needs were grouped into five categories, which were linked to Maslow's hierarchy of needs and related to the central concept of 'adaptive adjustment': (1) 'barely surviving'; (2) 'safety needs in jeopardy'; (3) 'sociocultural protection'; (4) 'self-esteem far beyond reach', and (5) 'dreaming of self-actualisation'. CONCLUSION: Families caring for children and adolescents with physical disabilities in north-eastern Tanzania have needs that extend beyond the available and accessible resources. Families can adjust and adapt by avoiding certain situations, accepting the reality of their circumstances and exploring alternative ways of coping. A sustainable support system, including social networks, is essential for meeting basic needs and ensuring safety.

Main findings: The challenges associated with caring for children and adolescents with disabilities are related to various environmental and social barriers, any of which can significantly impact the wellbeing of all family members.Added knowledge: In the context of a study conducted in north-eastern Tanzania, both nuclear and extended family networks were found to be valuable sources of support for these families.Global health impact for policy and action: Families must take considerable steps to strengthen their sociocultural support systems while, the support of the government and other stakeholders is crucial in addressing the challenges faced by families caring for children and adolescents with disabilities.

A systematic review on the direct approach to elicit the demand-side cost-effectiveness threshold: Implications for low- and middle-income countries.

Several literature review studies have been conducted on cost-effectiveness threshold values. However, only a few are systematic literature reviews, and most did not investigate the different methods, especially in-depth reviews of directly eliciting WTP per QALY. Our study aimed to 1) describe the different direct approach methods to elicit WTP/QALY; 2) investigate factors that contribute the most to the level of WTP/QALY value; and 3) investigate the relation between the value of WTP/QALY and GDP per capita and give some recommendations on feasible methods for eliciting WTP/QALY in low- and middle-income countries (LMICs). A systematic review concerning select studies estimating WTP/QALY from a direct approach was carried out in seven databases, with a cut off date of 03/2022. The conversion of monetary values into 2021 international dollars (i$) was performed via CPI and PPP indexes. The influential factors were evaluated with Bayesian model averaging. Criteria for recommendation for feasible methods in LMICs are made based on empirical evidence from the systematic review and given the resource limitation in LMICs. A total of 12,196 records were identified; 64 articles were included for full-text review. The WTP/QALY method and values varied widely across countries with a median WTP/QALY value of i$16,647.6 and WTP/QALY per GDP per capita of 0.53. A total of 11 factors were most influential, in which the discrete-choice experiment method had a posterior probability of 100%. Methods for deriving WTP/QALY vary largely across studies. Eleven influential factors contribute most to the level of values of WTP/QALY, in which the discrete-choice experiment method was the greatest affected. We also found that in most countries, values for WTP/QALY were below 1 x GDP per capita. Some important principles are addressed related to what LMICs may be concerned with when conducting studies to estimate WTP/QALY.