Unmet and under-met needs among Indian parents of children with neurological disorders.

BACKGROUND: Parents of children with neurological disorders commonly report having unmet needs related to their child's care. Mixed methods research is needed with parents of children with neurological disorders in India in order to: 1) quantify which needs are unmet and under-met, and 2) qualitatively explore how parents perceive their unmet and under-met needs. METHODS: This concurrent mixed-methods study used a convergence model of triangulation design. Parents of children with neurological disorders receiving treatment in a children's hospital in Hyderabad, India completed questionnaires (n = 205) on unmet/under-met needs. Twenty-five of these parents then completed in-depth interviews exploring experiential aspects of unmet needs. RESULTS: Quantitative analysis suggested that education about the child's illness and medical needs were the most frequent unmet needs. Parents needed their child's condition explained to them (91.7%) and greater continuity of their child's care (85.4%). Qualitative analysis suggested that parents reported struggling to find a specialist who was knowledgeable about their child's condition. Though parents living in rural areas quantitatively reported fewer unmet needs (child's medical care, care coordination, and communication) than parents living in the city (B = 0.92 [95%CI = 0.64,1.20] for medical care needs), the qualitative data showed this may be due to lower expectations from the health system. CONCLUSION: Parents of children with neurological disorders in India frequently report unmet and under-met needs. PRACTICE IMPLICATIONS: Community-based interventions coupled with training nurses on information provision could help bridge the gap between what is offered by hospital systems, and what is needed by parents, in terms of information and support.

Psychological outcomes, coping and illness perceptions among parents of children with neurological disorders.

OBJECTIVE: To assess the Common Sense Model among parents of children with neurological disorders, by determining the prevalence of symptoms of anxiety and depression, and how illness perceptions relate to symptoms of anxiety and depression both directly, and indirectly via coping. DESIGN: 205 parents of children with neurological disorders in Hyderabad, India completed questionnaires. MAIN OUTCOME MEASURES: Hospital Anxiety and Depression Scale, Brief Illness Perception Questionnaire and Coping Health Inventory for Parents. We used multiple regressions and PROCESS for SPSS to assess direct and indirect relationships. RESULTS: Mild to severe symptoms of anxiety (41.0%) and depression (39.5%) were common. Symptoms of anxiety and/or depression were related to perceived treatment control over the illness, perceived understanding of the illness, perceived personal control over the illness (anxiety only), and perceived timeline of the illness (depression only). The coping strategy 'maintaining social support' mediated the relationship between symptoms of depression and four illness perceptions: perceived consequences (95%CI=.03,-.21), timeline (95%CI=.01,-.25), perceived personal control (95%CI=.02-.24), and treatment control (95%CI=.01-.34). CONCLUSION: Our findings have implications for education interventions to improve community attitudes of child neurological disorders. Such interventions may allow families' social networks to provide more support to parents, which could aid parents' coping strategies.

Illness Experiences, Collective Decisions, and the Therapeutic Encounter in Indian Oncology.

Social science scholarship on cancer has been almost exclusively focused on Organization for Economic Cooperation and Development (OECD) countries, despite a significant epidemiological transition taking place in many non-OECD contexts, with cancer emerging as a prominent, and strongly feared, illness experience. With cancer gaining an increasingly high profile in India, there is an urgent need to explore how experiences of cancer may be socially and culturally embedded, and in turn, how localized practices may shape the therapeutic encounter. Here, drawing on interviews with 40 people living with cancer in Hyderabad, India, we focus on some specific components of their therapeutic journeys, including diagnostic and prognostic disclosure, collective versus individual decision making, the dynamics of medical authority, and the reception of cancer within their social milieu. These participants' accounts provide insight into a range of cultural sensibilities around illness and care, and reinforce the importance of understanding the cultural inflections of communication, decisions, and illness experiences.