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Journal article

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

Caregivers' and parents' explanatory models of intellectual disability in Khayelitsha, Cape Town, South Africa

Background: Post‐apartheid, understanding and management of intellectual disability remain poor in South Africa, complicated by various contextual and cultural explanations used to describe and conceptualize this condition.

Tue, 01/17/2023 - 09:40

Carer stress in Fetal Alcohol Spectrum Disorders: the implications of data from the UK national specialist FASD clinic for training carers

Medical research literature is increasingly reporting high levels of stress among carers of children with Fetal Alcohol Spectrum Disorders (FASD). However, while there are a growing number of evidence-based innovations around the world for carer stress generally, there are no programmes in the UK for those looking after children with FASD. The aim of this study, therefore, is to provide an up-to-date profile of stress faced by these carers, to explore its sources and suggest directions for service development.

Tue, 01/17/2023 - 09:37

Family-centred care for children and young people with cerebral palsy: results from an Italian multicenter observational study

Background: Family‐centred care (FCC) is recognized as the model of best practice for the provision of services for children who have physical disabilities and their families.

Tue, 01/17/2023 - 09:35

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