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Journal article

Parents' perspectives and experiences of kidney transplantation in children: A qualitative interview study

Background and Objective: Kidney transplantation offers greater life expectancy, quality of life and participation compared with dialysis, in children with end stage kidney disease. This study explores the perspectives and experiences of parents of children undergoing kidney transplantation, as the experiences of parents in the process of transplantation is not completely understood.

Tue, 12/20/2022 - 09:02

Mitigating distress and promoting positive aspects of caring in caregivers of children and adolescents with schizophrenia: Mediation effects of resilience, hope, and social support

Assistance for distressed caregivers can indirectly facilitate recovery of the people being cared for, yet how resilience, hope, and social support mediate between caregiving burden and adjustment outcomes is unclear.

Tue, 12/20/2022 - 08:57

Developing "Care Assistant": A smartphone application to support caregivers of children with acute lymphoblastic leukaemia

Acute lymphoblastic leukaemia (ALL) is the most common childhood malignancy. Caring for children with ALL is an uncommon experience for parents without medical training. They urgently need professional assistance when their children are recovering at home. This paper documents the process of developing an Android application (app) "Care Assistant" for family caregivers of children with ALL. Key informant interviews and focus group studies were used before programming the app.

Tue, 12/20/2022 - 08:54

Primary caregivers of in-home oxygen-dependent children: predictors of stress based on characteristics, needs and social support

Aim: To identify the predictors of primary caregivers' stress in caring for in-home oxygen-dependent children by examining the association between their levels of stress, caregiver needs and social support.; Background: Increasing numbers of primary caregivers of oxygen-dependent children experience caregiving stress that warrants investigation.

Design: The study used a cross-sectional design with three psychometric scales - Modified-Parenting Stress Index, Caregiver Needs Scale and Social Support Index.

Tue, 12/20/2022 - 08:49

Practical Needs in the Home Care of Latino Children With Medical Complexity

Latino children face barriers to high-quality healthcare. Because children with medical complexity (CMC) have higher healthcare needs, Latino CMC are likely to experience greater effects of these barriers. These vulnerabilities are exacerbated when Latino CMC endure adverse social conditions, such as food insecurity and housing instability. The study objective was to describe the challenges faced by caregivers of Latino CMC in meeting the practical needs of their children when caring for them at home.

Tue, 12/20/2022 - 08:44

Perceptions of Stress, Coping, and Intervention Preferences among Caregivers of Disadvantaged Children with Asthma

Asthma remains the most prevalent chronic illness among children. Despite the substantial body of literature examining children with asthma, few studies have examined parents' perspectives of the condition and experiences of caregiver stress. Parents of children with chronic illnesses experience elevated stress and may have limited opportunities to cope with complex emotions while caring for children with asthma.

Tue, 12/20/2022 - 08:40

Telehealth Acceptability for Children, Family, and Adult Hospice Nurses When Integrating the Pediatric Palliative Inpatient Provider during Sequential Rural Home Hospice Visits

Background: Children in rural geographies are not universally able to access pediatric-trained palliative or hospice providers.

Objective: Determine whether telehealth inclusion of a familiar pediatric palliative care provider during the first two home-based hospice visits was acceptable to children, families, and adult-trained home hospice nurses in rural settings. Design: Case series. Setting: Home hospice in rural Midwest. Participants: Patients <18 years of age enrolling in home hospice for end-of-life care.

Tue, 12/20/2022 - 08:35

Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review

Background: Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate.

Tue, 12/20/2022 - 08:27

Siblings' caring roles in families with a child with epilepsy

Despite large amounts of care for chronic conditions being provided within the family, information regarding the extent to which siblings contribute to informal care practices in families where a child has a chronic condition is limited. This article draws on multiple perspective data from 24 families that had a child with epilepsy. In doing so, the article illustrates siblings' significant contribution to caring for their brother or sister and further develops the alert assistant concept.

Tue, 12/13/2022 - 17:00

Impact of a Massage Therapy Intervention for Pediatric Palliative Care Patients and Their Family Caregivers

Context: All inpatient children receiving pediatric palliative care consults at a free-standing children's hospital.

Tue, 12/13/2022 - 16:56

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