caregivers

Background: Primary hemophagocytic lymphohistiocytosis (pHLH) is a rare and life-threatening disorder, which usually occurs during infancy or early childhood and is characterized by abnormal activation of the immune system. However, the burden of pHLH on children and their families has not been previously evaluated.

Background: Studies in the West have demonstrated that appropriate informational support is a vital component of cancer care, with positive effects on both patients and their informal caregivers.

Background: Informal caregivers, often family and friends, experience significant psychological and physical distress leading to reductions in health and quality of life (QOL). Mind-body interventions focused on caregivers are often limited and do not address multiple barriers, including caregivers’ economic, geographic, and time constraints. Translation of in-person, community-based interventions to Internet-based delivery may offer greater accessibility for caregivers, leading to increased adherence.

Background: The self-efficacy of caregivers is an important matter that merits investigation, and this requires that the concept of self-efficacy be measured with a valid, reliable instrument. Materials and Methods: This research examined the psychometric properties of the Turkish version of the Revised Scale for Caregiving Self-Efficacy. A sociodemographic form and the Revised Scale for Caregiving Self-Efficacy were employed to collect data from April through December 2019.

Background: Pediatric cancer diagnosis and treatment can impact the psychological adjustment and quality of life (QOL) of caregivers. Objectives: We examined: (a) the relationship between caregiver QOL and family psychosocial risk, mental health symptoms and distress concurrently, shortly after diagnosis, and six months later; and (b) which of these factors at near diagnosis can predict caregiver QOL six months later, controlling for demographic and child clinical factors. Methods: Participants were 122 caregivers in two Canadian sites.

Background: Family caregivers are key actors in the ageing society. They are mediators between practitioners and patients and usually provide also essential daily services for the elders. However, till now, few services have been deployed to help caregivers in their care tasks as in improving their mental health which can experience sever burden due to caregiving duties.

Context: Hospice is a service for those with a life expectancy of six months or less. Family caregivers suffer from depression and anxiety as they care for their loved one until they die. Little is known about how research participants decide to consent to participate in clinical trials in the hospice setting. Objectives: This pilot study sought to answer two research questions: 1) In what way do demographic characteristics, mental health, and perceived caregiving experience impact the decision by caregivers to participate in hospice clinical trials?

Background: The Community‐Based Rehabilitation (CBR) services under the Malaysian Ministry of Women, Family and Community Development have provided two types of services for disabled children: centre‐based and home‐based care since 1984. Methods: A cross‐sectional study was conducted among parents and caregivers with children receiving treatment at CBRs on the east coast of Peninsular Malaysia, to determine the level of satisfaction with the services provided. Respondents were recruited via multi‐staged sampling, and simple randomisation at CBR level.

Background: This study identifies and describes feeding concerns of parents of children with autism spectrum disorder (ASD) and examines the extent to which parents relate those concerns as having been addressed by therapists. Methods: Survey data were collected from 113 parents of children with ASD. Results: Of the parents surveyed, 68% described a past or present concern with feeding; 60% of those parents with concerns said a therapist had not addressed those concerns.

Background: Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions. Aim: We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe. Design: Secondary analysis of qualitative interview transcripts.