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The lived experience of family members who care for children with cancer: An interpretative phenomenological approach

Objectives: This study aimed to explore the lived experiences of family carers in the care of children with cancer. A phenomenological hermeneutic approach was conducted, informed by the philosophy of Martin Heidegger. Methods: Fourteen interviews were conducted with family members: mothers (n = 9), grandmothers and fathers (n = 5). Fourteen family carers were voluntarily enrolled from a public children's oncology department in Bethlehem in the Occupied Palestinian Territories. Interpretative Phenomenological Analysis (IPA) was used to analyze the data.

Tue, 06/07/2022 - 18:53

“Like filling a lottery ticket with quite high stakes”: a qualitative study exploring mothers’ needs and perceptions of state-provided financial support for a child with a long-term illness in Finland

Background: A child’s long-term illness or disability is always a serious matter that impacts the whole family. Costs related to an illness can substantially affect a family’s financial situation. To date, there is little research on how parents experience available support for financial assistance. Surveys in Finland have found that families of children with long-term illnesses and disabilities could experience financial struggle and perceive the state provided financial support system as too complex.

Tue, 06/07/2022 - 16:34

The Impact of a Brief Home-Based Intervention on Families with a Child with Autism Spectrum Disorder

Background: A brief intervention is described and evaluated that aimed to build and strengthen relationships for families of children diagnosed with ASD aged 12 and under. Methods: A particular focus was on socially disadvantaged parents. Parents were offered around five home visits which took place on weekdays during working hours; each lasting around 90 min. They were given individualised practical tools and support to manage their children's behaviours alongside providing a listening ear to parents' concerns.

Sun, 06/05/2022 - 14:11

Illness as Experienced by Parents of Children With End-Stage Renal Disease: The "Ill Unit"

Objectives: The purpose of this study is to shed light on the experience of parents of children who suffer from various stages of renal failure. Methods: Semistructured qualitative interviews conducted with 12 parents were analyzed using the interpretative phenomenological analysis method. Findings: Eight themes were identified and organized into two superordinate themes: intrasubjective experience and intersubjective experience.

Sun, 06/05/2022 - 14:04

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