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Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

Background: Patient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness. Aim: To examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base.

Mon, 10/07/2019 - 10:49

Internet use for family carers of people with intellectual disabilities: A literature review and thematic synthesis

Being a family carer can be rewarding but can also lead to mental and physical exhaustion as well as feelings of social exclusion and isolation. Research has shown that the use of the Internet and online forums can provide an immediate place to find information and reassurance and that forum use can be an empathetic place to share experiences and seek emotional support. This article details a systematic literature search of research on carers of people with intellectual disabilities and/or autism using the Internet.

Mon, 10/07/2019 - 10:44

The Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act

The Recognize, Assist, Include Support and Engage (RAISE) Family Caregivers Act was signed into law on January 23, 2018. The bill is Public Law 115-119 (U.S. Congress) had bipartisan sponsorship by Maine Senator Susan Collins (R) who chairs the Senate Committee on Aging and Wisconsin Senator Tammy Baldwin (D) along with Mississippi Congressman Harper Gregg (R) and Florida Congresswoman Kathy Caster (D) on the House side (Eisenberg, 2018).

Mon, 09/30/2019 - 15:06

Development and pilot testing of the “focus on the person” form: Supporting care transitions for people with dementia

When people with dementia are hospitalised, their capacity to communicate with the staff may be limited, compounding risks of distress and other adverse outcomes. Opportunities for carers to share relevant information to inform appropriate person-centred care are also limited. This four-phase mixed methods study aimed to develop an evidence-based family carer–staff communication form, the Focus on the Person form, to address this concern. In Phase I, a literature review plus consultation with clinicians and carers informed form development.

Mon, 09/30/2019 - 14:50

Utilizing evidence-based assessment instruments to detect well-being and distress in English- and Spanish-speaking caregivers of individuals affected by dementia

Objective: The purpose of this study was to examine the most effective and available English and Spanish language caregiver assessments for providers and caregivers. Methods: Assessments were included if they screened for caregiving-related concerns, including stress, depression, and caregiving burden and could be administered directly to caregivers in person or online. Results: Eighteen assessments are designed to assess caregiver burden, distress, depression, and grief.

Mon, 09/30/2019 - 14:45

Measuring the Needs of Family Caregivers of People With Dementia: An Assessment of Current Methodological Strategies and Key Recommendations

While dementia caregivers are regarded as a population with high unmet needs, there is little consensus as to how caregivers’ needs should be conceptualized and measured. This article describes how dementia caregivers’ needs are currently assessed in the scientific literature with the goal of suggesting guidelines for the enhancement of future measurement of caregiver needs.

Mon, 09/30/2019 - 11:58

An asymmetric burden: Experiences of men and women as caregivers of people with psycho-social disabilities in rural North India

Caring for a family member with a psycho-social disability can be both rewarding and burdensome. This study analyses the experiences of caregivers of people with psychosocial disabilities (PPSDs) in rural communities in North India using relational gender theory. In-depth interviews with 18 female and male caregivers of PPSDs probed the social, emotional and health impacts of their caregiving role. Nine themes were identified that were grouped under three meta-themes: intra-personal, inter-personal and institutional impacts.

Wed, 09/25/2019 - 18:34

Caregivers for the elderly in Thailand: development and evaluation of an online support system

Informal caregivers are playing a major role in helping elderly people with their activities in daily life. The purpose of this work is to develop an Online Support System for Elderly Care (OSSEC) to provide services for informal caregivers in Thailand. The system has six modules which are: patient and caregiver profile manager, elderly care recommender applying case-based reasoning, daily care plan manager, elderly care activity notifier, elderly care information resource locator and caregivers’ social interaction platform.

Wed, 09/25/2019 - 18:10

Care Burden and Mental Ill Health in Spouses of People With Parkinson Disease Dementia and Lewy Body Dementia

Objectives: To explore and compare levels of mental health, care burden, and relationship satisfaction among caregiving spouses of people with mild cognitive impairment or dementia in Parkinson disease (PD-MCI or PDD) or dementia with Lewy bodies (DLB). Methods: Spouses (n = 136) completed measures of mood, stress, resilience, general health, quality of life, care burden, and relationship satisfaction, as well as sociodemographic factors.

Wed, 09/25/2019 - 17:37

"I Don't Feel Like I Have Any Control of My Life at All . . . Everything Overwhelms Me. Everything": Analyzing Caregiver Uncertainty and Control Through Stance Marking

Informal caregivers immersed in the daily care of loved ones at end-of-life stages face such challenges as medical and household issues, worries, doubts, and uncertainties. Using a macro-mezzo-micro approach to discourse, we analyzed parent study interview data involving 46 caregivers facing end-of-life realities. At the mezzo level, we examined caregivers' expressed perceptions of control. We then more finely analyzed discursive expressions of affective stances pertaining to caregivers' emotions and feelings, and epistemic stances pertaining to their knowledge and belief states.

Wed, 09/25/2019 - 16:12

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