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Empirical evaluation of the association between daily living skills of adults with autism and parental caregiver burden

Background: Despite the joy of parenting, the burden of daily caregiving for children with autism spectrum disorders (ASD) can be overwhelming and constant. Parents can expect to provide enduring care for their children with ASD. Given that the majority of individuals with autism spectrum disorders (ASD) remain in their family homes well into adulthood, often the need for assistance with activities of daily living (ADLs) is placed on parents. Providing ongoing support to adult children who have difficulty with completing ADLs can increase parental caregiving demands.

Mon, 02/21/2022 - 11:15

Dravet Syndrome—The Polish Family’s Perspective Study

Aim: The aim of the paper is to study the prevalence of Dravet Syndrome (DS) in the Polish population and indicate different factors other than seizures reducing the quality of life in such patients. Method: A survey was conducted among caregivers of patients with DS by the members of the Polish support group of the Association for People with Severe Refractory Epilepsy DRAVET.PL. It included their experience of the diagnosis, seizures, and treatment-related adverse effects.

Thu, 02/10/2022 - 10:42

Determinants of Time to Care for Children and Adolescents With Disabilities

Background: Time use studies uncover the organization of daily routine of families of children with disabilities. The objective of this study is to identify determinants of time spent caring for children/adolescents with cerebral palsy (CP), autism spectrum disorder (ASD), and typical development (TD). Methods: Participants were caregivers of children/adolescents with/without disability. Structural equation modeling tested a proposed model of time spent in child care.

Wed, 02/02/2022 - 20:41

A delicate balance between control and flexibility: Experiences of care and support among pre‐teenage children with type 1 diabetes and their families

Background: For children with type 1 diabetes, the period of adolescence is associated with higher blood glucose levels and increased psychological distress compared to other age groups. Focusing on pre‐teens (9‐12 years) with type 1 diabetes and their families has been suggested as key to understanding and reducing these challenges. The aim of this study was to explore: 1, how diabetes affects family life, 2, experiences of and needs for support and 3, how care responsibilities are negotiated among pre‐teens with type 1 diabetes and their families.

Wed, 02/02/2022 - 12:47

Caring for a child with Epidermolysis Bullosa: a scoping review on the family impacts and support needs

Aims: Epidermolysis Bullosa (EB) is a rare genetic disorder characterised by recurrent skin blistering. Wound care and nursing are critical to everyday lives of EB patients. The aim of this review was to identify the support needs of parents of a child with EB and to assess the impact EB has on the family unit, irrespective of subtype of condition severity.

Thu, 01/27/2022 - 12:36

Caregiver Social Status and Health-Related Quality of Life in Neurologically Impaired Children on Home Enteral Nutrition

Background: We aimed to investigate the association between caregiver social status and health-related quality of life (HRQoL) in children with neurological impairment (NI) on home enteral nutrition (HEN). Methods: This was an ancillary study of a multicenter, cross-sectional study which explored HRQoL in 75 NI children on HEN. All the caregivers from the original cohort were contacted, and data on education level, occupation and marital status were collected.

Mon, 01/24/2022 - 15:54

Anxiety and depression among caregivers of young children with Congenital Zika Syndrome in Brazil

Aims: To examine the psychological well-being of primary caregivers of infants and toddlers with Congenital Zika Syndrome (CZS), and the roles of family resources, parenting stress, and coping strategies in caregivers' adaptation. Methods: Family caregivers (N = 50) of children with CZS who were receiving treatment at a rehabilitation hospital in Recife, Brazil participated a cross-sectional survey study. Caregivers completed measures of anxiety and depression, coping strategies, family resources, and parenting stress.

Wed, 12/15/2021 - 11:15

How Children of Parents With Dementia Can Make Their Subject Positions Understandable and Meaningful

The families of people diagnosed with dementia are commonly first-in-line caregivers. This can have a considerable effect on their lives, health, and relationships. However, few studies have focused on the children in such families. Therefore, the aim of this study was to describe how children, in their own narratives, construct themselves as subjects growing up and caring for a parent with dementia. The study applies discourse analysis. The findings show three subject positions: parent to your parent(s), orphan with parents, and time traveler stuck in time.

Thu, 07/30/2020 - 14:38

“I have to be both mother and father”: The impact of Young-onset dementia on the partner’s parenting and the children’s experience

There has been increasing research on the experience and needs of caregivers for persons with YOD, who are mainly spouses. Yet one little-explored area is their evolving parental role. As the person with YOD becomes less able to parent, the partner must take on more and more parental responsibilities. This occurs in much-changed familial context, with children often asked to assume caretaking roles and experiencing strong feelings such as grief, anger, and fear.

Mon, 07/27/2020 - 13:06

Children with ill parents: extent and nature of caring activities

Rationale Previous studies have shown that children may take on higher extents of caring activities if their parents are affected by severe illness or disability, especially when their parents lack access to formal and informal care. Aims and objectives This study examined the extent and nature of caring activities done by patients’ children; differences in caring activities between different types of parental illness; factors associated with caring activities. Design An explorative cross‐sectional multicentre study.

Mon, 04/01/2019 - 14:56

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