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John Wiley

Hispanic Caregivers' experience of pediatric type 1 diabetes: A qualitative study

Background & Objective: It is widely recognized that Type 1 Diabetes (T1D) outcomes are worse among Hispanic children; however, little is published about the perspectives of these patients and their caregivers. Our intent was to characterize the lived experience of Hispanic caregivers of children with T1D, focusing on the role of language and culture and their perspectives on current medical care and alternative care models. We studied Hispanic caregivers of patients (age 2–17 years) with T1D of greater than 6 months' duration.

Wed, 08/31/2022 - 17:54

Understanding context: A qualitative analysis of the roles of family caregivers of people living with cancer in Vietnam and the implications for service development in low‐income settings

Objectives: Research on the needs of family caregivers of people living with cancer remains disproportionately focused in high income contexts. This research gap adds to the critical challenge on global equitable delivery of cancer care. This study describes the roles of family caregivers of people living with cancer in Vietnam and possible implications for intervention development. Methods: Semi‐structured interviews and focus groups with family caregivers (n = 20) and health care providers (n = 22) were conducted in two national oncology hospitals.

Mon, 08/22/2022 - 11:06

Understanding context: A qualitative analysis of the roles of family caregivers of people living with cancer in Vietnam and the implications for service development in low‐income settings

Objectives: Research on the needs of family caregivers of people living with cancer remains disproportionately focused in high income contexts. This research gap adds to the critical challenge on global equitable delivery of cancer care. This study describes the roles of family caregivers of people living with cancer in Vietnam and possible implications for intervention development. Methods: Semi‐structured interviews and focus groups with family caregivers (n = 20) and health care providers (n = 22) were conducted in two national oncology hospitals.

Mon, 08/22/2022 - 11:06

Acceptance and perception of digital health for managing nutrition in people with Parkinson's disease and their caregivers and their digital competence in the United States: A mixed‐methods study

Background and aims: This mixed‐methods study examined participants' acceptance and perception of using digital health for managing nutrition and participants' digital competence. The results will be formative for making digital nutrition education more effective and acceptable for people with Parkinson's disease (PwPD) and their informal caregivers.

Thu, 08/18/2022 - 13:48

Mental health outcomes and experiences of family caregivers of children with disabilities during the COVID-19 pandemic in Bolivia

Objective: This study examined whether certain demographic characteristics, caregiver strain, and coping behaviors were associated with the mental health outcomes of family caregivers of children with disabilities in Bolivia during the COVID-19 pandemic. Methods: A mixed-methods convergent study design was used with virtual interviews to quantitatively assess caregivers' demographic characteristics, caregiver strain, coping behaviors, and mental health outcomes, as well as qualitatively assess how the pandemic affected their family.

Tue, 08/16/2022 - 20:13

Self‐care experiences of Pakistani patients with COPD and the role of family in self‐care: A phenomenological inquiry

Background: Self‐care enables patients in improving quality of life and reducing hospital admissions. Research explored the experiences of patients about breathlessness, sleep problems and complication management in chronic obstructive pulmonary disease (COPD). However, the self‐care experiences and the role of the family in self‐care are underexplored. Objectives: This study aimed to understand the self‐care experiences of patients with COPD and explore the role of the family in self‐care.

Sat, 06/18/2022 - 16:23

Quality of life among caregivers of children with epilepsy: A cross‐sectional study at Eastern Nepal

Objective: To assess the quality of life among caregivers of children with epilepsy in a tertiary care center of eastern Nepal. Methods: A cross‐sectional study was conducted among primary caregivers of children with epilepsy, who accompanied their child in child neurology clinic. Consecutive sampling was done, and 106 respondents were interviewed. Data were collected using World Health Organization Quality of Life‐BREF (WHOQOL‐BREF) scale and analyzed using Statistical Package for the Social Sciences. Descriptive and Inferential statistics were applied.

Thu, 06/16/2022 - 15:41

Going inside the relationship between caregiver and care‐receiver with Amyotrophic Lateral Sclerosis in Italy, a Grounded Theory study

Background: People with amyotrophic lateral sclerosis become dependent on caregivers for daily activities and to perform self‐care activities at home. The family caregiver has an important role in the care. The patient decides and controls care but depends on the caregiver to implement self‐care behaviours.

Wed, 06/01/2022 - 18:25

Experiences of Reciprocal Caring Among Adults With an Intellectual Disability Caring for an Older Family Member

Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill‐health. This has resulted in a shift in the parameters of the relationship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one.

Mon, 02/28/2022 - 10:57

Care difficulties and burden during COVID‐19 pandemic lockdowns among caregivers of people with schizophrenia: A cross‐sectional study

Aims: The purpose of this study was to retrospectively investigate care difficulties experienced by caregivers of people with schizophrenia during COVID‐19 pandemic lockdowns in Japan (April 7‐May 25, 2020) and examine associations between these care difficulties during lockdowns and daily caregiver burden. Methods: Data were collected from 132 participants of the LINE Schizophrenia Family Association using an online survey.

Tue, 01/18/2022 - 16:21