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Taylor & Francis

A service evaluation of parent adherence with dysphagia management therapy guidelines: reports from family carers supporting children with complex needs in Greece

Purpose: Many children with complex needs exhibit eating, drinking, and/or swallowing disorders (dysphagia). These children often have associated learning needs, and require assistance from carers for daily tasks such as eating and drinking. The aim of this study was to identify which strategies to manage dysphagia were challenging for family carers, and reasons for any non-adherence. Method: In this service evaluation researchers observed carers during mealtimes, and investigated carer opinions of strategies used to minimise the risks of dysphagia.

Wed, 02/01/2023 - 09:29

Factors contributing to higher caregiving burden in Turkish mothers of children with autism spectrum disorders

Aim: The aim of this study was to explore the caregiver burden and related factors such as expressed emotion (EE), social support, life satisfaction, dyadic adjustment, post-traumatic growth, and socio-demographic characteristics of mothers with autism spectrum disorder (ASD) children.

Tue, 01/31/2023 - 10:16

Family caregivers' reported nonadherence to the controller medication of asthma in children in Casablanca (Morocco): Extent and associated factors

Objective: Recent statistics show a relatively high prevalence of asthma among Moroccan children and a weak control over their symptoms. To our knowledge, no research has been carried out to document adherence to the controller treatment in this population. This study aims 1) to assess the extent of children's nonadherence to the controller treatment of asthma in an urban region of Morocco as reported by a family caregiver, and 2) to identify the associated factors.

Tue, 01/17/2023 - 10:11

The relationship between barriers to care, caregiver distress, and child health-related quality of life in caregivers of children with cancer: A structural equation modeling approach

The current study examined the relationship between demographic variables, treatment factors, and perceived barriers to care to both caregiver distress and caregiver-reported child health-related quality of life in caregivers of children diagnosed with cancer utilizing path analysis. Parental distress is examined as a potential mediator between barriers to care and income, as well as child age and caregiver-reported health-related quality of life (HRQOL). The final model demonstrated close fit to the data.

Tue, 01/17/2023 - 09:21

Time burden of caring and depression among parents of individuals with cerebral palsy

Purpose: The presence of an individual with disability in a family affects the whole family. Families of individuals with cerebral palsy (CP) experience increased psychological anxiety and financial problems; specifically, parents tend to feel time pressure and struggle to maintain their social and cultural activities.

Mon, 01/16/2023 - 09:38

Psychometric evaluation of the Scandinavian version of the caregiver priorities and child health index of life with disabilities

Purpose: To examine test-retest reliability and construct validity of the Scandinavian version of the caregiver priorities and child health index of life with disabilities (CPCHILD) questionnaire for children with cerebral palsy (CP).

Wed, 01/11/2023 - 16:04

Higher levels of caregiver strain perceived by Indian mothers of children and young adults with cerebral palsy who have limited self-mobility

Aim: Describe and compare the caregiver strain experienced among Indian mothers of children and young adults with cerebral palsy (CP) living in low resource settings.

Wed, 01/11/2023 - 12:56

Economic burden, work, and school productivity in individuals with tuberous sclerosis and their families

Aims: Tuberous sclerosis complex (TSC) is a multi-organ autosomal-dominant, genetic disorder with incomplete penetrance. The multiple manifestations of TSC and impacts to numerous organ systems represent significant disease, healthcare, and treatment burden. The economic and employment burden of the disease on individuals and their families is poorly understood. This study assessed the cost of illness and work and school productivity burden associated with TSC in a cross-sectional web-survey sample.

Thu, 01/05/2023 - 16:03

Hope for the Future But Fear the Risk of Stigma: Ethiopian Family Caregivers' Lived Experience of Caring for Their HIV Positive Child Two Years After Starting Antiretroviral Treatment

Family caregivers are believed to be the primary source of support for HIV-affected children. There is limited evidence about practices of support for caregivers, to strengthen them and to enhance the welfare of HIV positive children, especially in African settings. Our aim was therefore to illuminate caregivers' lived experiences of caring for a child in Ethiopia 2 years after the child was enrolled in antiretroviral therapy.

Thu, 01/05/2023 - 12:19

Challenging the status quo. Commentary on "Mothers' experiences of the transition of young people with autism spectrum disorder to adult care" (McMinn, Schulz, & Ludlow, 2019)

A recent survey by the Carers Trust and the Men's Health Forum in the United Kingdom found that 42% of carers were male and about 16% were caring for those with autism spectrum disorder or an intellectual disability (https://professionals.carers.org/sites/default/files/husband%5fpartner%5fdad%5fson%5fcarer%5fa%5fsurvey%5fof%5fthe%5fexperiences%5fand%5fneeds%5fof%5fmale%5fcarers.pdf).

Sun, 01/01/2023 - 15:04

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