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Journal article

Palliative and End-of-Life Care: More Work is Required

There is currently growing recognition of the complex care needs of patients with life-limiting conditions and their family members, prompting the need to revisit the goals of medicine. This Special Issue reflects a broad research agenda in the field of palliative and end-of-life care. A total of 16 papers of empirical studies and systematic review are included spanning five domains, namely, patient, caregiver, healthcare provider, policy, and methodology.

Tue, 04/06/2021 - 12:02

Open communication between caregivers' and terminally ill cancer patients about illness and death: The role of gender - A correlational study

Purpose: Caregivers face severe difficulties in communicating openly with their terminally ill relatives about illness and death. Some studies suggest that females are more likely than males to hold such conversations. We compared level of open communication between male and female spouse-caregivers, and the contribution of personal and situational characteristics to the explanation of open communication level within each gender group. Methods: The study design was correlational. We interviewed 77 spousal-primary caregivers of terminal cancer patients.

Tue, 04/06/2021 - 11:36

An online survey of informal caregivers' unmet needs and associated factors

Purpose/objective: The purpose of this study was to assess the frequency of unmet needs of carers among a convenience sample of carers, and the participant factors associated with unmet needs, to inform the development of interventions that will support a range of caregivers. The aims of this study were to: (1) assess the most frequently reported moderate-high unmet needs of caregivers; and (2) examine the age, gender, condition of the care recipient, and country variables associated with types of unmet needs reported by informal caregivers.

Tue, 04/06/2021 - 11:31

Online resources for family caregivers of cognitively competent patients: A review of user-driven reputable health website content on caregiver communication with health professionals

Objective: Most patients want their family involved in consultations and decisions, however some family caregivers report feeling overwhelmed and unsure of their role. As caregivers are increasingly looking to medical websites for guidance, this study aimed to review reputable web-resources available to inform family caregivers on how to be involved in medical consultations and decisions. Methods: Google searches were performed using lay search strings, to imitate how a cancer caregiver may locate information.

Tue, 04/06/2021 - 11:26

A Novel Educational Prescription Web-Based Application to Support Education for Caregivers of People Living With Dementia: Development and Usability Study With Clinicians

Background: It is estimated that 564,000 Canadians are currently living with dementia and there are approximately 486,000 to 1.1 million informal family/friend caregivers. Family/friend caregivers often receive little to no education or training about dementia but are expected to provide ongoing support for a complex condition.

Tue, 04/06/2021 - 11:18

Nonpharmacological Forms of Therapy to Reduce the Burden on Caregivers of Patients with Dementia-A Pilot Intervention Study

The aim of this pilot intervention study was to assess the effectiveness of selected forms of therapy (massage and relaxation) in reducing the perceived burden and improving the emotional status of caregivers of people with dementia and to determine which form of physical intervention is most effective. The study group was made up of 45 informal caregivers, who were divided into three subgroups (the massage group, relaxation group and control group).

Tue, 04/06/2021 - 11:12

The necessity for sustainable intervention effects: lessons-learned from an experience sampling intervention for spousal carers of people with dementia

Caring for a person with dementia can be challenging over the years. To support family carers throughout their entire caregiving career, interventions with a sustained effectivity are needed. A novel 6-week mobile health (mHealth) intervention using the experience sampling method (ESM) showed positive effects on carers' well-being over a period of 2 months after the intervention. In this study, the effects after 6 months of the selfsame intervention were examined to evaluate the sustainability of positive intervention effects.

Tue, 04/06/2021 - 11:08

The mutual impact and moderating factors of quality of life between advanced cancer patients and their family caregivers

Purpose: Cancer and its treatment can affect quality of life (QOL) in cancer patient and family caregiver dyads. However, the factors influencing dyad QOL remain inconclusive. Our study was designed to (i) assess dyads’ QOL, and examine the relationship between the QOL of cancer patients and that of their family caregivers, and (ii) investigate factors that may modify this relationship. Methods: Participants comprised 641 cancer patient-family caregiver dyads.

Tue, 04/06/2021 - 10:57

A multilevel mixed effects analysis of informal carers health in Australia: the role of community participation, social support and trust at small area level

Background Informal carers suffer from worse health outcomes than non-carers due to their caregiving role. Yet, in a society carers health is as important as that of their care recipients. This study investigated the self-assessed mental and general health outcomes of informal carers in Australia. It evaluated the influence of carers' personal social capital- a logically linked sequence of their social behaviour such as community participation, social support and trust in others- on their health outcomes.

Tue, 04/06/2021 - 10:41

Moving Evidence-Informed Assessment and Management of Behavioral and Psychological Symptoms of Dementia into the Real World: Training Family and Staff Caregivers in the DICE Approach

Objective: To investigate the impact of a one-day training program on care-givers' confidence and knowledge in managing aspects of dementia care. Design: One-day caregiver training program featuring: 1) an interactive, multi-media format; 2) a companion manual; and 3) a "brain-storming" session at the end of the day that utilized attendees' real-world cases where the use of the DICE (Describe, Investigate, Create, and Evaluate) approach was illustrated "live." Setting: Three different geographical sites in Michigan.

Tue, 04/06/2021 - 10:36