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Communication Challenges in Korean Families Coping With Adolescent Cancer

PURPOSE: To examine the family communication experience of Korean adolescents with cancer and their parents, including how adolescents and their parents verbally share feelings and concerns related to the adolescent's cancer diagnosis with one another, and how emotional communication affects parent-adolescent relationships and the family's coping abilities.

Thu, 01/05/2023 - 15:09

“It goes against the grain”: A qualitative study of the experiences of parents’ administering distressing health‐care procedures for their child at home

Background: Parents caring for children with complex and long‐term conditions at home take on responsibility for technical health‐care procedures that may cause their child distress. Little evidence exists about parents’ experience of this specific aspect of their caring role.

Aims: To explore and understand parents’ experiences of administering distressing health‐care procedures as part of caring for their child at home.

Wed, 12/21/2022 - 11:16

A support programme for caregivers of children with disabilities in Ghana: Understanding the impact on the wellbeing of caregivers

Background: Four fifths of the estimated 150 million children with disability in the world live in resource poor settings where the role of the family is crucial in ensuring that these children survive and thrive. Despite their critical role, evidence is lacking on how to provide optimal support to these families. This study explores the impact of a participatory training programme for caregivers delivered through a local support group, with a focus on understanding caregiver wellbeing.

Tue, 12/13/2022 - 10:08

“It’s extremely hard but it’s not a burden”: A qualitative study of family caregiving for people living with dementia in Vietnam

Background: Vietnam is one of the fastest-aging countries in the world with a rising number of people with Alzheimer’s disease and related dementias (ADRD). Families in Vietnam provide most of the care for persons living with dementia, yet our understanding of their experiences and needs is limited. Objectives: This study examined the family caregiving experience in a semi-rural region outside of central Hanoi from the perspectives of family caregivers and other key informants.

Fri, 07/29/2022 - 20:18

VidaTalk™ patient communication application "opened up" communication between nonvocal ICU patients and their family

Background: To explore family members' perceptions of an electronic communication application, VidaTalk™, their communication experience, and emotional reactions to communication with mechanically ventilated patients in the intensive care units. Methods: Qualitative phase of a mixed-methods study nested within a randomised controlled trial. Family members in the intervention group received the VidaTalk™ app as a communication aid during their intensive care stay.

Thu, 07/21/2022 - 20:46

The Online Life Story Book: A randomized controlled trial on the effects of a digital reminiscence intervention for people with (very) mild dementia and their informal caregivers

Background: This paper describes a randomized controlled trial on the Online Life Story Book (OLSB), a digital reminiscence intervention for people with (very) mild dementia living at home. Objectives: The aim of the study was to investigate the effectiveness of the OLSB on (i) neuropsychiatric symptoms (NPS) in persons with dementia and (ii) the distress and quality of life (QOL) of primary informal caregivers.

Thu, 06/09/2022 - 14:49

The experiences of family caregivers of people with severe mental illness in the Middle East: A systematic review and meta-synthesis of qualitative data

Background: There is a wealth of literature exploring the experiences of family caregivers of people with severe mental illness (SMI) in western countries, however, this topic has been neglected in the Middle East, despite families being the main source of caregiving in this context. The purpose of this review was to conduct a systematic review and qualitative meta-synthesis to explore the experiences of family caregivers living in countries in the Middle East caring for a relative with severe mental illness.

Sun, 02/27/2022 - 21:48

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

Caregiver burden in Buruli ulcer disease: Evidence from Ghana

Background: Buruli ulcer disease (BUD) results in disabilities and deformities in the absence of early medical intervention. The extensive role of caregiving in BUD is widely acknowledged, however, associated caregiver burden is poorly understood. In this paper we assessed the burden which caregivers experience when supporting patients with BUD in Ghana. Method: principal findings This qualitative study was conducted in 3 districts in Ghana between August and October 2019.

Fri, 01/21/2022 - 13:45

The care needs of persons with oropharyngeal dysphagia and their informal caregivers: A scoping review

Introduction: Besides affecting physical health, Oropharyngeal Dysphagia (OD) entails limitations in daily activities and social participation for both patients and their informal caregivers. The identification of OD-related needs is crucial for designing appropriate person-centered interventions. Aims: To explore and map the literature investigating the care needs related to OD management of adult persons with OD and their informal caregivers during the last 20 years.

Wed, 01/19/2022 - 12:02

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