Journal article

Purpose: The 15- and 10-item short forms of the Singapore Caregiver Quality of Life Scale (SCQOLS-15 and SCQOLS-10) were recently developed as a quick assessment of caregiver quality of life. Reference values describing the distribution of the total and domain scores are available for the full-length version, but they are not yet available for the short forms. This study aimed to estimate the reference values for the short forms.

Background: The felt obligation to return a benefit, termed reciprocity, has been identified as motivating care exchanges between older adults and their younger family members. Within the context of large-scale emigration of young adults from the Indian state of Kerala, this study examines how left-behind older adults and their family care-givers recognise, interpret and give meaning to reciprocal exchanges, expectations and obligations in their care relationship.

Background:  It is unknown how Swiss professionals support for young carers.  Previous national research suggests a lack of support services for young carers.  Professionals do provide individual as well as a family-centred support.  Social services seem to be most inclined to initiating interdisciplinary support. The situation of children, adolescents, young adults with caring responsibilities and their families has only recently been addressed in the Swiss context.

Introduction: COVID-19 as a pandemic has disproportionately affected older adults, including those with dementia. The effects on health and social care systems has necessitated a rapid-response approach to care planning and decision-making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. In light of this, a decision-making tool to help families of persons with dementia was developed using a combination of qualitative data and evidence synthesis.

Introduction: A family-centered care model (FCCM) providing family-based HIV services, rather than separate adult/pediatric services, has been proposed to increase pediatric retention and treatment adherence. Materials and methods: Eight health-care facilities in the Hhohho region of Eswatini were randomized to implement FCCM (n = 4) or continue standard-of-care (SOC) separate adult/pediatric clinics (n = 4).

Purpose: Informal family caregivers are increasingly recognized as critical for meeting the needs of individuals with chronic diseases associated with aging. This study examined race and gender differences in perceived informal caregiver availability for participants aged 45 and older in a large national epidemiological study. Design and Methods: Cross-sectional data were collected in structured telephone interviews from 32,999 participants from the REasons for Geographic and Racial Differences in Stroke (REGARDS) study.

Objectives: To understand the awareness of transitional care in patients with JIA and their families. Methods: A questionnaire survey on transitional care was conducted among patients with JIA during their transitional period who were attending the pediatric rheumatology of our university and the members of parents' association of JIA (the Asunaro-kai). Results: 57.1% of patients and 35.9% of their parents did not know the word 'transitional care'.

Background: Spinal muscular atrophy (SMA) is an autosomal-recessive motor neuron disease leading to dysfunction of multiple organs. SMA can impair the quality of life (QoL) of patients and family. We aimed to evaluate the QoL of children with SMA and their caregivers and to identify the factors associated with QoL in a cross-sectional study conducted in China. Methods: We recruited 101 children aged 0–17 years with SMA and their caregivers from a children’s hospital in China. Twenty-six children had type I SMA, 56 type II and 19 type III.

Objective: Informal family caregivers provide critical support for patients receiving chimeric antigen receptor (CAR) T‐cell therapy. However, caregivers' experiences are largely unstudied. This study examined quality of life (QOL; physical functioning, pain, fatigue, anxiety, and depression), caregiving burden, and treatment‐related distress in caregivers in the first 6 months after CAR T‐cell therapy, when caregivers were expected to be most involved in providing care. Relationships between patients' clinical course and caregiver outcomes were also explored.

Background: Studies have shown that children and adolescents with autism and their relatives present a high level of stress and more family problems, impacting parents’ and caregivers’ quality of life (QoL). Despite studies on this subject, there is no specific questionnaire to evaluate QoL in parents or caregivers of children and adolescents with an autistic spectrum disorder (ASD) in Brazil. Therefore, this study’s primary purpose was to develop and validate a specific questionnaire to evaluate QoL in these individuals.