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Measuring the outcomes of long-term care for unpaid carers: comparing the ASCOT-Carer, Carer Experience Scale and EQ-5D-3 L

Background: The ASCOT-Carer and Carer Experience Scale are instruments designed to capture aspects of quality of life 'beyond health' for family carers. The aim of this study was to compare and validate these two carer care-related measures, with a secondary aim to compare both instruments to the three-level EQ-5D (EQ-5D-3 L) measure of health-related quality of life.

Wed, 01/11/2023 - 11:55

Take A Breath: study protocol for a randomized controlled trial of an online group intervention to reduce traumatic stress in parents of children with a life threatening illness or injury

Background: A substantial proportion of parents whose child is diagnosed with a life-threatening illness, experience high levels of distress that can lead to long-term difficulties in mental health, family functioning and child adjustment. This study evaluates the efficacy of an Acceptance Commitment Therapy-based group intervention designed to reduce distress symptoms in these parents. The program is delivered using videoconferencing to overcome factors that prevent participation in traditional face-to-face therapy.

Tue, 01/10/2023 - 17:08

Effect of predicted low suspend pump treatment on improving glycaemic control and quality of sleep in children with type 1 diabetes and their caregivers: the QUEST randomized crossover study

Background: In attempting to achieve optimal metabolic control, the day-to-day management is challenging for a child with type 1 diabetes (T1D) and his family and can have a major negative impact on their quality of life. Augmenting an insulin pump with glucose sensor information leads to improved outcomes: decreased haemoglobin A1c levels, increased time in glucose target and less hypoglycaemia. Fear of nocturnal hypoglycaemia remains pervasive amongst parents, leading to chronic sleep interruption and lack of sleep for the parents and their children.

Thu, 01/05/2023 - 18:53

Analysis of the caregiver burden associated with Sanfilippo syndrome type B: panel recommendations based on qualitative and quantitative data

Background: Sanfilippo syndrome type B (Sanfilippo B) belongs to a group of rare lysosomal storage diseases characterized by progressive cognitive decline from an early age, acute hyperactivity, and concomitant somatic symptoms. Caregivers face a unique set of challenges related to the complex nature of Sanfilippo B, but the burden and impact on quality of life (QoL) of caregivers is poorly defined and best practice guidance for clinicians is lacking.

Thu, 01/05/2023 - 18:19

Experiences of caregivers of children with inherited metabolic diseases: a qualitative study

Background: We sought to understand the experiences of parents/caregivers of children with inherited metabolic diseases (IMD) in order to inform strategies for supporting patients and their families. We investigated their experiences regarding the management of disease, its impact on child and family life, and interactions with the health care system.

Thu, 01/05/2023 - 16:41

Parents' and caregivers' experiences and behaviours when eating out with children with a food hypersensitivity

Background: For parents and caregivers of food hypersensitive (FH) children, accommodating their child's dietary needs when eating out can be a challenging experience. This study explored caregivers' experiences and behaviours when eating out with their FH child in order to gain insights into how they support and prepare their child in negotiating safe eating out experiences. Methods: A cross-sectional, qualitative design was used. In depth, semi-structured interviews were carried out with 15 caregivers of children with FH.

Sun, 01/01/2023 - 15:35

Dietary treatment of Crohn's disease: perceptions of families with children treated by exclusive enteral nutrition, a questionnaire survey

Background: Diet is strongly associated with the aetiology of Crohn's Disease (CD) and exclusive enteral nutrition (EEN) is the primary induction treatment in paediatric CD. This study explored opinions around the use of EEN and alternative novel, solid food-based diets (SFDs) expressed by paediatric patients with CD, previously treated with EEN and their parents.

Wed, 12/21/2022 - 10:22

Stigma and discrimination: barriers to the utilisation of a nutritional program in HIV care services in the Tigray region, Ethiopia

Background: In Ethiopia, stigmatising attitudes towards people living with HIV have reduced over time. This is mainly due to improved HIV knowledge and the expansion of access to HIV care and support services. However, HIV stigma and discrimination remain a key challenge and have negative impacts on access to and utilisation of HIV services including nutritional programs in the HIV care setting. A small number of studies have examined the experience of stigma related to nutritional programs, but this is limited.

Tue, 12/20/2022 - 16:54

Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a low-income African country: a cross-sectional facility-based survey

Background: Understanding the perspectives of caregivers of children with developmental disorders living in low-income countries is important to inform intervention programmes. The purpose of this study was to examine the stigma experiences, explanatory models, unmet needs, preferred interventions and coping mechanisms of caregivers of children with developmental disorders in Ethiopia.

Tue, 12/20/2022 - 13:57

Brief version of the coping health inventory for parents (CHIP) among family caregivers of children with chronic diseases

Background: The Coping Health Inventory for Parents (CHIP) has demonstrated good psychometric properties in several language forms and has been used to assess the coping behaviors of families facing disease. However, the CHIP has not been validated in Mexico among families of children with chronic conditions, where it could be useful for research and intervention.

Tue, 12/20/2022 - 13:27

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