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Evaluation of the measurement properties of the Brazilian version of two quality-of-life questionnaires in food allergy - for children and their parents

Objective: To evaluate the psychometric properties of the Brazilian version of health-related quality-of-life questionnaires of children with food allergy and their parents.

Tue, 01/17/2023 - 10:05

Social Networking Family of Caregivers during Hospitalization of Children

Objective: To identify and analyze the significant networks of family, social and hospital support described by the family caregivers of hospitalized children 5-12 years during the hospital stay.

Method: Descriptive study, exploratory and qualitative study conducted with 20 caregivers of children hospitalized in a hospital in a city in southern Brazil, through semi-structured interviews and significant social networks maps, tailored to the hospital setting.

Tue, 01/17/2023 - 10:02

Parental feeding concerns of infants and young children with oesophageal atresia

Aim: Feeding problems have been described in young children with oesophageal atresia (OA). The primary aim of this study was to determine the specific concerns of parents and carers of infants and young children with OA regarding introducing solids and moving up to family foods.

Tue, 01/17/2023 - 10:00

Caregiver and Adolescent Patient Perspectives on Comprehensive Care for Inflammatory Bowel Diseases: Building a Family-Centered Care Delivery Model

Background: Children with inflammatory bowel diseases (IBDs) require primary and gastrointestinal (GI) care, but little is known about patient and family preferences for care receipt. We aimed to understand caregiver perceptions of current healthcare quality, describe barriers to receiving healthcare, and elicit caregiver and adolescent preferences for how comprehensive care ideally would be delivered.

Tue, 01/17/2023 - 09:57

Sleep Outcomes for Parents of Children With Neurodevelopmental Disabilities: A Systematic Review

Parents of children with Neurodevelopmental Disabilities (NDDs) are at risk of sleep loss. No comprehensive systematic reviews examining parental sleep outcomes in caregivers of children with NDDs exist. A systematic search was conducted between June and August 2016 examining sleep quantity, quality, sleepiness, and fatigue outcomes of caregivers of children with NDDs. Of 7,534 citations retrieved, 33 met eligibility criteria. Most studies (n = 27) were cross-sectional, included a range of NDDs and were of “poor” (n = 14) or “fair” (n = 17) quality.

Tue, 01/17/2023 - 09:55

Family-Focused Therapy for Bipolar Disorder: Reflections on 30 Years of Research

Family-focused therapy (FFT) is an evidence-based intervention for adults and children with bipolar disorder (BD) and their caregivers, usually given in conjunction with pharmacotherapy after an illness episode. The treatment consists of conjoint sessions of psychoeducation regarding bipolar illness, communication enhancement training, and problem-solving skills training. This paper summarizes over 30 years of research on FFT and family processes in BD.

Tue, 01/17/2023 - 09:53

Experiences of living with juvenile idiopathic arthritis: a qualitative systematic review protocol

Objective: The objective of this review is to identify, critically appraise and synthesize the available qualitative evidence to understand the experiences of children, young adults and their carers living with juvenile idiopathic arthritis in any setting.

Tue, 01/17/2023 - 09:49

Psychometric Properties of the Family Inventory of Resources for Management in a Sample of Iranian Family Caregivers of Cancer Patients

Objective: The aim of this study was to investigate the psychometric properties of the Family Inventory of Resources for Management (FIRM) in a sample of family caregivers of cancer patients.

Tue, 01/17/2023 - 09:47

Short break and emergency respite care: what options for young people with life-limiting conditions?

Background: Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.

Objective: To explore alternative short break and emergency respite care options to children's hospice care.

Methods: A two-phase evaluation with young people, families and professionals.

Tue, 01/17/2023 - 09:44

'I Waited for It until Forever': Community Barriers to Accessing Intellectual Disability Services for Children and Their Families in Cape Town, South Africa

Background: Intellectual disability is more common in low- and middle-income countries than in high-income countries. Stigma and discrimination have contributed to barriers to people with intellectual disability accessing healthcare. As part of a larger study on caregiving of children with intellectual disability in urban Cape Town, South Africa, we interviewed a sub-group of families who had never used the intellectual disability services available to them, or who had stopped using them.

Tue, 01/17/2023 - 09:42

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