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Caring for children with an intellectual disability: An exploratory qualitative study

This study explored family caregiver experiences of children with an intellectual disability in a rural South African day-care centre. The family caregivers (N = 15; mothers = 60%; age range = 35 to 68 years) completed in-depth interviews regarding their experiences providing care to children with intellectual disability. Data collection and analysis was done using phenomenological methods.

Fri, 01/06/2023 - 17:04

A longitudinal examination of dyadic distress patterns following a skills intervention for carers of adolescents with anorexia nervosa

Family interventions in anorexia nervosa (AN) have been developed to ameliorate maladaptive patterns of patient-carer interaction that can play a role in illness maintenance. The primary aim of this study is to examine the inter-relationship between baseline and post-treatment distress in dyads of carers and patients with AN to examine the interdependence between carers and patients. The secondary aim is to examine whether a carer skills intervention [Experienced Carer Helping Others (ECHO)] impacts on this inter-relationship.

Fri, 01/06/2023 - 17:01

Impact of Cosmetic Camouflage on the Quality of Life of Children With Skin Disease and Their Families

Background/objectives: Cosmetic camouflage is known to improve quality of life in adults. Few data are available regarding cosmetic camouflage in children, and thus it is not often selected as a mode of treatment. We sought to determine whether cosmetic camouflage leads to improved quality of life of pediatric patients with visible dermatoses and their parent or primary caregiver.

Fri, 01/06/2023 - 16:58

Understanding Different Aspects of Caregiving for Individuals with Autism Spectrum Disorders (ASDs) a Narrative Review of the Literature

Background: There has been a considerable endeavor to understand associated challenges of caregiving for a child with Autism Spectrum Disorders (ASDs) and to develop the necessary skills and approaches to assist parents of children with ASD. Different studies have been stressed the importance and need for parental involvement in the intervention process to increase positive impacts.

Fri, 01/06/2023 - 16:55

Using Hybrid Telepractice for Supporting Parents of Children with ASD during the COVID-19 Lockdown: A Feasibility Study in Iran

During the three-month closure of clinics and day centers in Iran due to the coronavirus disease 2019 (COVID-19) lockdown, parents of children with Autism Spectrum Disorder (ASD) became solely responsible for their care and education. Although centers maintained telephone contact, it quickly became evident that parents needed more detailed advice and guidance. Staff from 30 daycare centers volunteered to take part in a two-month online support and training course for 336 caregivers of children with ASD of different ages.

Fri, 01/06/2023 - 16:53

Measuring the impact of dermatological conditions on family and caregivers: a review of dermatology-specific instruments

The patient is the centre of a web of relationships, and the impact of his/her disease on family members and caregivers must be taken into account. The aim of this study was to identify the specific instruments that measure the impact of a dermatological disease on the quality of life (QoL) of family members, by performing a systematic search of the literature. Fifteen papers were identified, describing the creation and validation of nine instruments.

Fri, 01/06/2023 - 16:50

Concurrent validity of the international Family Quality of Life Survey

The measurement of the social construct of Family Quality of Life (FQOL) is a parsimonious alternative to the current approach of measuring familial outcomes using a battery of tools related to individual-level outcomes. The purpose of this study was to examine the internal consistency and concurrent validity of the International FQOL Survey (FQOLS-2006), using cross-sectional data collected from 65 family caregivers of children with developmental disabilities. It shows a moderate correlation between the total FQOL scores of the FQOLS-2006 and the Beach Center's FQOL scale.

Fri, 01/06/2023 - 16:47

Family Experience in Treating Children with Chronic Renal Failure Undergoing Hemodialysis Therapy

Objective: Children who enter phase 5 of chronic renal failure need hemodialysis as a therapy. In undergoing hemodialysis, children experience various physical and psychosocial problems. Parents, as caregivers, are required to be at their children's side to overcome these problems. This study aimed to explore the experience of families in caring for children with chronic renal failure undergoing hemodialysis therapy.

Fri, 01/06/2023 - 16:45

Children With Acute Lymphoblastic Leukemia And Families: Focus Group Study Of Their Unmet Needs

Background: The impact of pediatric oncology is psychosocially and physically profound. Children and their families have problems coping with the stresses of treatment, surgery, chemotherapy, and radiation. However, qualitative research incorporating the phenomenological experiences of children and their caregivers and professionals dealing with such cases in explaining the fabrics of trauma they handle especially in Indian socio-cultural set up is needed.

Fri, 01/06/2023 - 16:35

The Impact of Celiac Disease on Caregivers' Well-being: An Integrative Review

Objectives: A diagnosis of celiac disease (CD) requires individuals to adopt a strict gluten-free diet. As children with CD must rely on their caregivers for guidance and support with managing the gluten-free diet, CD may challenge the caregiver's emotional and social well-being. The primary objective of this mixed-methods systematic review was to synthesize research investigating the impact of CD on caregiver's well-being.

Fri, 01/06/2023 - 16:31

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