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Models of support to family members during the trajectory of cancer: A scoping review

Aims and objectives: To map the existing literature on support models provided to family members during the cancer trajectory. Background: Cancer diagnosis, treatment and survivorship have a profound influence on the surrounding family members. This scoping review is part of the development of a support model for family members of persons diagnosed with colorectal cancer.

Tue, 08/23/2022 - 22:40

The impact of coronavirus disease 2019 on emotional and behavioral stress of informal family caregivers of individuals with stroke or traumatic brain injury at chronic phase living in a Mediterranean setting

Background: Even in nonpandemic times, persons with disabilities experience emotional and behavioral disturbances which are distressing for them and for their close persons. Objectives: We aimed at comparing the levels of stress in emotional and behavioral aspects, before and during coronavirus disease 2019 (COVID-19), as reported by informal family caregivers of individuals with chronic traumatic brain injury (TBI) or stroke living in the community, considering two different stratifications of the recipients of care (cause and injury severity).

Tue, 08/23/2022 - 19:25

Caregiving adult children’s perceptions of challenges relating to the end of life of their centenarian parents

Background: The number of centenarians in Europe is increasing; many face health impairments. Adult children often play a key role in their care, but there is a lack of research into what it means for these caregiving relatives to be confronted for many years with their parents’ end of life (EOL), dying and death as well as their own advancing age. Objectives: This study aims to analyse the challenges of caregiving adult children regarding their parents’ end of life and the related burdens and barriers they report.

Tue, 08/23/2022 - 18:59

Caregivers’ experiences of contributing to patients’ self‐care in Chronic Obstructive Pulmonary Disease: A thematic synthesis of qualitative studies

Objectives: To identify, analyze and synthesize qualitative studies on caregivers’ experiences of contributions to the self‐care of patients with Chronic Obstructive Pulmonary Disease (COPD). Background: COPD patients perform daily self‐care behaviours to manage the disease. With aging and disease progression, patients need to rely on the contributions of informal caregivers, usually family members, for disease management. Caregivers’ normal or habitual contributions to patients’ self‐care have not yet been completely investigated.

Tue, 08/23/2022 - 18:34

Preliminary investigation of family caregiver burden and oral care provided to homebound older patients

Objectives: Family caregivers play an important role in maintaining the oral health of homebound older adults. Thus, this preliminary study investigated family caregivers' burdens and the oral care they provide to homebound older patients. Methods: A cross‐sectional survey was conducted. A questionnaire was distributed to 230 family caregivers of homebound older patients. We used the Japanese version of the Zarit Burden Interview (J‐ZBI) to measure caregiver burden. The cut‐off score for the J‐ZBI was 21 points.

Tue, 08/23/2022 - 16:47

Tough transitions: Family caregiver experiences with a pediatric long-term ventilation discharge pathway

Objectives: Discharging a child home on long-term ventilation (LTV) via tracheostomy is complex and involves multiple healthcare providers across healthcare sectors. To date, there has been a paucity of data with respect to the experiences of families transitioning a child home on LTV. Our objective was to explore the perceptions of family caregivers (FCs) who have completed a newly developed LTV discharge pathway as they transitioned home. Methods: We conducted 11 semi-structured interviews with FCs.

Tue, 08/23/2022 - 15:19

Exploring the experiences of living with Lewy body dementia: An integrative review

Objectives: Lewy body dementia is a common neurodegenerative dementia with unique challenges in managing day-to-day life. A more in-depth multifaceted picture of the Lewy body dementia lived experience will enable identification of best practice and future research direction. The review aim was to explore experiences of people living with Lewy body dementia and their family carers. Methods: Integrative review method informed by Whittemore and Knafl, supported by the information retrieval framework PALETTE.

Tue, 08/23/2022 - 13:33

A socially prescribed community service for people living with dementia and family carers and its long‐term effects on well‐being

Background: Support services for people with dementia are variable depending on the area or town they live. People with dementia and family carers can often get very little support after a diagnosis. Services might not be suitable or they may not be aware of the service in the first place. Objective: The aim of this study was to evaluate a socially prescribed community service provided to people with dementia and family carers offering physical and mental activities.

Wed, 08/17/2022 - 18:57

Integrated dementia care: A qualitative evidence synthesis of the experiences of people living with dementia, informal carers and healthcare professionals

Background: In order to provide improved care provision, integrated care services are being developed. However, little is known about how people living with dementia, their families and healthcare professionals experience integrated care. Therefore, the purpose of this review of the qualitative literature was to examine the experiences and perceptions of integrated dementia care. Methods: This qualitative review synthesised findings from included studies identified from a comprehensive literature search.

Tue, 08/16/2022 - 20:25

Community participation of families of children with profound intellectual and multiple disabilities in South Africa

Background: Families struggle to support family members with profound intellectual and multiple disabilities (PIMD), especially in low resourced settings where formal services may not be available. Method: The adapted Family Community Participation survey, measuring perceptions of community participation, was administered to 67 primary caregivers of children with PIMD in Cape Town by community-based rehabilitation workers. Results: Families were most satisfied going to religious activities and getting together with family and friends.

Wed, 08/10/2022 - 17:13

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