Journal article

Prior studies indicate a substantial link between maternal depression and early child health but give limited consideration to the direction of this relationship or the context in which it occurs. We sought to create a contextually informed conceptual framework of this relationship through semi-structured interviews with women that had lived experience of caring for an HIV-infected child while coping with depression and anxiety symptoms. Caregivers explained their role in raising healthy children as complex and complicated by poverty, stigma, and isolation.

Background: Nigeria has the highest burden of paediatric HIV infection, and the success of control efforts in the country is crucial to the global control of the HIV epidemic. However, defaults from schedules of care pose a threat to paediatric HIV control in Nigeria. This study was conducted in a pioneer facility for the implementation of the National HIV Prevention and Treatment Programmes.

Importance: A substantial proportion of parents whose child is diagnosed with a life-threatening illness experience high levels of distress that can lead to long-term mental health difficulties. This can affect the child's recovery.

Objective: To evaluate the efficacy of an acceptance and commitment therapy-based group intervention, delivered using videoconferencing, in reducing posttraumatic stress symptoms (PTSS) in these parents.

Objectives: The transition from hospital to home is a period of risk, particularly for children with medical complexity. Our aim was to identify and address discharge challenges through execution of postdischarge phone calls.

Aims and Objectives: To describe the perceived burden on parents of children with severe or moderate haemophilia and the impact of sociodemographic aspects and the child's medical condition on this.

Background: Parents of children with haemophilia face a multitude of demands. The child needs frequent intravenous injections, hospital visits, extra supervision and care. The child's illness and related management might have psychosocial effects on the parents.; Design: A multicentre, cross-sectional study.

Hemophilia is a complex condition to manage, especially for parents to newly diagnosed children. This grounded theory study explores parents’ learning processes and illness management in daily life during the first year after the start of their child’s treatment. Using a longitudinal qualitative design, eight parents of four children were interviewed repeatedly during 12 to 14 months. The core category, reaching independence through forced learning, reflected the parents’ learning process and their experiences of the challenges during the first year after start of treatment.

Background: The aim of this study was to understand the impact of Dravet syndrome (DS) on patients with Dravet syndrome and their families, with a focus on the social and economic impact on both mothers and fathers.

Aim: To assess the relevance and generalizability across countries of concepts of the impact of Dravet syndrome beyond seizures, as recognized by families.

Erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) are rare photodermatoses, generally presenting in childhood with severe and painful phototoxicity. EPP has been reported to negatively affect quality of life (QoL), but there is limited information on the psychosocial issues faced by patients and families. To address this, an online focus group study was conducted to explore the perspective of parents of children with EPP, and young adults and children with EPP.

Background: Caregivers of patients with chronic illnesses are often uncompensated for work that is physically demanding, time consuming and emotionally and economically draining. This is particularly true for caregivers of children with nodding syndrome, an emergent neurological disorder of unknown etiology in resource poor settings in Africa. We aimed to explore perceptions of caregivers regarding challenges that a typical caregiver faces when caring for a child with nodding syndrome.