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Journal article

“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

Care without sufficient knowledge of people with home enteral tube feeding: A qualitative study

Objectives: This study aimed to explore family caregivers experiences with tube feeding at home in Iran. Methods: This qualitative study was conducted with purposefully selected family caregivers who participated in an in-depth, semi-structured, face-To-face interview. Data analysis was performed through content analysis and rigor was investigated. Results: In total, 20 caregivers were interviewed. Two main categories were found in the interview data: abandoned training and lack of knowledge of nutrition .

Fri, 07/29/2022 - 19:40

“If It Needs to be Done, It Needs to be Done”: National Survey of Youth Experiences and Perspectives on Caregiving

Objectives: The purpose of this study was to explore youth experiences and perspectives on family caregiving to improve programs and policies that impact the well-being of youth. Methods: In August 2020, we asked three open-ended questions about current and anticipated caregiving responsibilities, impact, and needs using MyVoice, a national text message poll of youth. Content and thematic analysis was conducted to evaluate qualitative responses.

Fri, 07/29/2022 - 19:31

“What do we fear the most?”: Exploring fears and concerns of patients, family members and dyads in end‐stage renal disease

Introduction: End‐stage renal disease (ESRD) and the need for haemodialysis (HD) treatment are increasing. The course of the disease and all the life readjustments needed may generate a multitude of fears in patients and families. Objectives: This study aimed to explore the main fears and concerns of patients with ESRD undergoing HD and their family members. Methods: A qualitative study was performed.MethodsIndividual semi‐structured interviews were conducted with three groups: 20 patients, 14 family caregivers and 15 patient–family dyads.

Fri, 07/29/2022 - 19:25

"Together We Stand": A Pilot Study Exploring the Feasibility, Acceptability, and Preliminary Effects of a Family-Based Psychoeducational Intervention for Patients on Hemodialysis and Their Family Caregivers

Objectives: This pilot study aimed to assess the feasibility, acceptability, and preliminary effects of a family-based psychoeducational intervention for patients undergoing hemodialysis (HD) and their family members. Methods: This was a single-group (six dyads), six-week, pre-post pilot study, delivered in a multifamily group format. Feasibility was based on screening, eligibility, content, retention, completion, and intervention adherence rates. Acceptability was assessed at post-intervention through a focus group interview.

Fri, 07/29/2022 - 18:00

"The Dementia Diva Strikes Again!": A Thematic Analysis of How Informal Carers of Persons with Dementia Use TikTok

Background: Informal carers of persons with dementia often resort to social media to alleviate their sense of social isolation and cultivate their platform to share their experience in care. Methods: The present study performed a preliminary analysis on how TikTok creators share their personal experience caring for a loved one with dementia through content shared under the hashtag #dementiacaregiver. We performed a systemic review and inductive thematic analysis of 447 TikTok posts.

Fri, 07/29/2022 - 17:51

"it can be hard but it's not bad": Three questions to solicit caregiver perceptions of benefits and burdens to participating in pediatric palliative care research

Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and their families is essential. Design: In a grounded theory study with three data points (T1, T2, and T3), we evaluated benefits and burdens of family caregiver participation at T3.

Fri, 07/29/2022 - 17:43

'This is Still All about Love': Practitioners' Perspectives of Working with Family Carers Affected by the Harmful Behaviour of the Older Person for Whom They Care

Objectives: This article explores a hidden and under-acknowledged dimension of caring in family life: when older people with care needs act in a harmful, abusive or violent way towards the family member(s) who cares for them. Methods: Thirty-eight health and social care professionals, working in the UK, took part in five focus groups to explore their experience of working with families in this situation.

Fri, 07/29/2022 - 16:28

'She misses the subtleties and I have to help - help to make the invisible visible': parents' role in supporting adults with intellectual and developmental disabilities with intimate relationships

Background: People with intellectual and developmental disabilities often need support to develop and maintain intimate relationships; however, little is known regarding the role of family carers in this area. Methods: Focus groups were conducted with 19 family members to explore the support they provide to people with intellectual and developmental disabilities to find a potential partner and any support they may have to provide to support/develop an existing relationship.

Fri, 07/29/2022 - 16:20

The ‘work’ of managing medications when someone is seriously ill and dying at home: A longitudinal qualitative case study of patient and family perspectives’

Background: Managing medications can impose difficulties for patients and families which may intensify towards the end of life. Family caregivers are often assumed to be willing and able to support patients with medications, yet little is known about the challenges they experience or how they cope with these. Aim: To explore patient and family caregivers’ views of managing medications when someone is seriously ill and dying at home.

Tue, 07/26/2022 - 10:52

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