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Journal article

Determinants of primary and non‐primary informal care‐giving to home‐based palliative care cancer care‐recipients in Ontario, Canada

Background: Informal care plays an important role in the care of care‐recipients. Most of the previous studies focused on the primary caregivers and ignored the importance of non‐primary caregivers. Moreover, little is known about the provision of informal care in the context of home‐based palliative care. Objectives: The purpose of this study was to examine the provision of primary and non‐primary informal care‐giving and their respective determinants.

Wed, 08/24/2022 - 15:19

Determinants of informal care‐giving in various social relationships in the Netherlands

Objectives: This study investigates determinants for offering help to family members, neighbours and friends, based on the Informal Care Model. Methods: We do so in pooled representative data for the Netherlands collected in 2014 and 2016 (persons >17 years, n = 13,165). Results: One‐third provides informal care to a person with health problems or impairments: partners (4%, n = 671), parents or children (16%, n = 2,381), distant relatives (6%, n = 858), friends or neighbours (6%, n = 839).

Wed, 08/24/2022 - 15:14

Designing and Evaluating a Goal-Setting Tip Sheet for Stroke Family Caregiver Health

Objectives: The aim of the study was to design and evaluate a goal-setting tip sheet to improve stroke family caregiver health as part of the Telephone Assessment and Skill-Building Kit program. Methods:  A multimethod design using open-ended questions and rating forms was used in this study. Methods In two studies, the goal-setting tip sheet was evaluated by caregivers (N = 12; N = 6), researchers (N = 10; N = 3), clinicians (N = 8; N = 4), and technology experts (N = 4; N = 4).

Wed, 08/24/2022 - 15:07

Depressive-Symptom Trajectories From End-of-Life Caregiving Through the First 2 Bereavement Years for Family Caregivers of Advanced Cancer Patients

Background: Family caregivers' distinct depressive-symptom trajectories are understudied and have been examined independently during end-of-life (EOL) caregiving or bereavement, making it difficult to validate two competing hypotheses (wear-and-tear vs. relief) of caregiving effects on bereavement. Existing studies may also miss short-term heterogeneity in depressive symptoms during the immediate postloss period due to lengthy delays in the first postloss assessment.

Wed, 08/24/2022 - 14:59

Cost analysis of informal care: estimates from a national cross-sectional survey in Sweden

Background: Over the past decades, informal care has increased in most OECD-countries. Informal care is costly to caregivers and to society in the form of lost income and direct costs of providing care. Existing evidence suggests that providing informal care affects caregivers’ overall health. However, estimates of the social costs of informal care based on national data on individuals are currently scarce.

Wed, 08/24/2022 - 12:59

Experiences of people with memory disorders and their spouse carers on influencing formal care: “They ask my wife questions that they should ask me”

Background: People with memory disorders often need care and help from family carers and health and social care providers. Due to the deterioration of cognitive capacity and language skills, they may be unable to convey their thoughts and care preferences to other people. As a result, their agency may become restricted. We investigated the descriptions provided by people with memory disorders and spousal carers of their influence on care in encounters with formal care providers.

Wed, 08/24/2022 - 12:53

Development and psychometric evaluation of the perceived care tension questionnaire for caregivers of hemodialysis patients: A mixed method study

Background: The complex, multifaceted care environment and the threatening situation of caring for hemodialysis patients cause tension in their family caregivers. Due to the severe tension, family caregivers are likely to ignore their basic needs and only pay attention to the patient's needs and related issues. This study was conducted with the aim of designing and evaluating the Perceived Care tension Questionnaire for Caregivers of Hemodialysis Patients (PCTQHFC).

Wed, 08/24/2022 - 12:46

Digital personal assistants are smart ways for assistive technology to aid the health and wellbeing of patients and carers

Background: Digital health solutions such as assistive technologies create significant opportunities to optimise the effectiveness of both health and social care delivery. Assistive technologies include ‘low-tech’ items, such as memory aids and digital calendars or ‘high-tech’ items, like health tracking devices and wearables. Depending on the type of assistive devices, they can be used to improve quality of life, effect lifestyle improvements and increase levels of independence.

Wed, 08/24/2022 - 12:38

Developing an mHealth Application to Coordinate Nurse-Provided Respite Care Services for Families Coping With Palliative-Stage Cancer: Protocol for a User-Centered Design Study

Background: Patients living with palliative-stage cancer frequently require intensive care from their family caregivers. Without adequate community support services, patients are at risk of receiving inadequate care, and family caregivers are at risk for depression and poor health. For such families, in-home respite care can be invaluable, particularly when the services are flexible and staffed by trusted care providers, such as nurses. Other industries are using mobile apps to make services more flexible.

Wed, 08/24/2022 - 12:33

The COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia – a qualitative study

Background: Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. Objectives: The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway. Methods: The study had a qualitative descriptive design using individual telephone interviews for data collection.

Wed, 08/24/2022 - 12:10

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