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“The system is well intentioned, but complicated and fallible” interviews with caregivers and decision makers about palliative care in Canada

Background: Canadian palliative care (PC) philosophy seeks to support individuals in a person-centered and sensitive manner. Unfortunately, philosophy does not necessarily translate into practice and this divide may leave patients without appropriate care at the end of life, causing distress for some families.

Fri, 07/29/2022 - 20:27

Who are the beneficiaries and what are the reasons for non-utilization of care respite and support services? A cross-sectional study on family caregivers

Background: Family caregivers assume substantial caregiving responsibilities for persons with chronic conditions, such as individuals with spinal cord injury, which leads to negative impacts on their lives. Respite care and other services are provided as a temporary relief and support for them. Design of appropriate respite care programs depends on identification of beneficiary subgroups for the different types of service.

Mon, 07/25/2022 - 19:50

Which factors increase informal care hours and societal costs among caregivers of people with dementia? A systematic review of Resource Utilization in Dementia (RUD)

Background: Nearly 19 million people across OECD countries are living with dementia, and millions of family caregivers are affected by the disease. The costs of informal care are estimated to represent 40–75% of the total dementia cost exceeding formal care time and medical costs.

Mon, 07/25/2022 - 19:45

Views of patients with advanced disease and their relatives on participation in palliative care research

Background: Patients with advanced disease may not be invited to participate in research based on the assumption that participation would be too burdensome for them. The aim of this study was to explore how patients with advanced disease and their relatives evaluate their experience with research participation. Method: This study used data from two parts of a larger project. The first dataset was a cross-sectional questionnaire study focused on priorities at the end of life.

Mon, 07/25/2022 - 12:59

Video decision support tool promoting values conversations in advanced care planning in cancer: protocol of a randomised controlled trial

Background: Views on advance care planning (ACP) has shifted from a focus solely on treatment decisions at the end-of-life and medically orientated advanced directives to encouraging conversations on personal values and life goals, patient-caregiver communication and decision making, and family preparation. This study will evaluate the potential utility of a video decision support tool (VDST) that models values-based ACP discussions between cancer patients and their nominated caregivers to enable patients and families to achieve shared-decisions when completing ACP’s.

Mon, 07/25/2022 - 11:44

Willingness and preparedness to provide care: interviews with individuals of different ages and with different caregiving experiences

Background: At present, the provision of informal care to older relatives is an essential pillar of the long-term care system in Germany. However, the impact of demographic and social changes on informal caregiving remains unclear. Methods: Thirty-three semi-structured interviews were conducted with care consultants, informal caregivers and people without any caregiving experience to explore if people are willing to provide older adult care and how prepared these are with regard to the possibility of becoming care dependent themselves.

Fri, 07/22/2022 - 11:37

Understanding the positive outcomes of discharge planning interventions for older adults hospitalized following a fall: a realist synthesis

Background: Older adults hospitalized following a fall often encounter preventable adverse events when transitioning from hospital to home. Discharge planning interventions developed to prevent these events do not all produce the expected effects to the same extent. This realist synthesis aimed to better understand when, where, for whom, why and how the components of these interventions produce positive outcomes.

Fri, 07/22/2022 - 10:34

Utilization of telemedicine to support caregivers of young children with ASD and their Part C service providers: a comparison of intervention outcomes across three models of service delivery

Background: Families of young children with autism spectrum disorder (ASD) frequently experience barriers to accessing evidence-based early intervention services. Telemedicine presents an opportunity to increase access to these services, particularly for families in rural and under-resourced areas. The present article describes a brief behavioral intervention and support model for families of young children with concerns for ASD.

Thu, 07/21/2022 - 20:39

A typology of caregiving spouses of geriatric patients without dementia: caring, worried, desperate

Background: An increasing number of older people in Germany receive care at home from family members, particularly from spouses. Family care has been associated not only with subjective burden but also with negative effects on caregivers’ health. A heterogeneous group, caregivers are confronted with individual situational demands and use different available coping strategies. To date, little is known about the relationship between burden and coping by spousal caregivers, particularly in the context of geriatric patients without dementia.

Thu, 07/21/2022 - 15:45

The Turkish version of the SPPIC validated among informal caregivers with a Turkish immigrant background

Background: This study assesses the internal consistency and known group validity of the Turkish version of the SPPIC, a measurement instrument to assess the self perceived pressure from informal care in family caregivers of people with dementia that was originally in Dutch. Methods: The feasibility, comprehensibility and appropriateness of the Turkish SPPIC were assessed during a pilot test.

Thu, 07/21/2022 - 15:38

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