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Perception of impact of Dravet syndrome on children and caregivers in multiple countries: looking beyond seizures

Aim: To assess the relevance and generalizability across countries of concepts of the impact of Dravet syndrome beyond seizures, as recognized by families.

Mon, 01/16/2023 - 13:42

Children with cerebral palsy in Ghana: malnutrition, feeding challenges, and caregiver quality of life

Aim: To assess feeding difficulties and nutritional status among children with cerebral palsy (CP) in Ghana, and whether severity of feeding difficulties and malnutrition are independently associated with caregiver quality of life (QoL).

Wed, 01/11/2023 - 13:28

Enteral feeding and its impact on family mealtime routines for caregivers of children with cerebral palsy: A mixed method study

Background/aim: Enteral feedings are part of the daily mealtime experience for many caregivers of children with cerebral palsy. The scope of occupational therapy practice incorporates multiple aspects of the enteral feeding process. Yet, the research in this area is very limited. The purpose of this study was to provide practitioners with better understanding of the impact enteral feedings of children with cerebral palsy have on family mealtime routines.

Fri, 01/06/2023 - 17:14

Challenges, Coping, and Resilience Among Immigrant Parents Caring for a Child With a Disability: An Integrative Review

Purpose: The aim of this integrative review is to synthesize quantitative and qualitative research evidence on challenges in caring for a child with a disability among immigrant parents and to understand their coping strategies and resiliency factors associated with their coping. Methods: A comprehensive literature search was conducted to identify relevant studies from the following databases: MEDLINE, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Scopus, PsycINFO, Social work abstract, Cochrane library, and EMBASE.

Wed, 12/28/2022 - 23:19

Dualities of dementia illness narratives and their role in a narrative economy

The concept of 'narrative economies' has recently been proposed as a set of exchange relationships that, through biography and story-telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre-existing group of dementia advocates, representing the voices of those living with the condition.

Fri, 02/01/2019 - 12:20

Care and caregiving in the context of intermediate and continuing care

This contribution is devoted to those who take care of others, given here the general name of carer. It is stated that there are an estimated 6.8 million carers in the UK looking after people with a very wide range of health and social needs. Caring for others is an activity that can have both good and adverse effects on the life of a carer. More attention has been focused on the bad effects but some research looks at the positive aspects of caring. The main factors affecting carers' lives are noted.

Thu, 07/20/2017 - 15:10