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Research Studies is a monthly compilation of research articles funded by AHRQ or authored by AHRQ researchers and recently published in journals or newsletters.
Results1 to 5 of 5 Research Studies Displayed
Armstrong MJ, Gamez N, Alliance S
Research priorities of caregivers and individuals with dementia with Lewy bodies: an interview study.
The authors investigated the research priorities of individuals and caregivers living with dementia with Lewy bodies (DLB). Through telephone interviews, they found that individuals with DLB and caregivers identified research needs and highlighted DLB symptoms needing additional research. They recommended that funding be informed by the priorities of all relevant stakeholders and support research investigating causes, natural history, biomarkers, and treatment in addition to research targeting themes regarding living with disease.
Citation: Armstrong MJ, Gamez N, Alliance S . Research priorities of caregivers and individuals with dementia with Lewy bodies: an interview study. PLoS One 2020 Oct 7;15(10):e0239279. doi: 10.1371/journal.pone.0239279..
Keywords: Caregiving, Dementia, Neurological Disorders, Patient and Family Engagement, Elderly, Research Methodologies
Kukulka K, Washington KT, Govindarajan R
Stakeholder perspectives on the biopsychosocial and spiritual realities of living with ALS: implications for palliative care teams.
The purpose of this study was to generate a rich description of the realities of living with amyotrophic lateral sclerosis (ALS), equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers. Study findings illustrated the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The investigators concluded that the complex biopsychosocial needs experienced by patients and family caregivers suggested numerous opportunities for meaningful palliative care involvement.
Citation: Kukulka K, Washington KT, Govindarajan R . Stakeholder perspectives on the biopsychosocial and spiritual realities of living with ALS: implications for palliative care teams. Am J Hosp Palliat Care 2019 Oct;36(10):851-57. doi: 10.1177/1049909119834493..
Keywords: Palliative Care, Patient-Centered Outcomes Research, Neurological Disorders, Patient-Centered Healthcare, Patient and Family Engagement, Caregiving
Armstrong MJ, Rastgardani T, Gagliardi AR
Barriers and facilitators of communication about off periods in Parkinson's disease: qualitative analysis of patient, carepartner, and physician Interviews.
This article discusses barriers and facilitators of communication with Parkinson’s disease patients, care partners, and their physicians specifically during off periods. Twenty persons with Parkinson’s and their care partners, and 20 physicians participated in interviews using a semi-structured questionnaire. Communication barrier levels were identified as patient-level, caregiver-level, and physician-level. For patients cognitive impairment and reluctance to discuss symptoms was the largest barrier. Caregiver absence was also a barrier. For physicians barriers were distraction by technology and lack of appreciation of off period burdens. Various tools such as home diaries, questionnaires and mobile phone videos can be used to aid communication regarding off periods. Patients and their caregivers stressed the need for more formal educational materials and improved educational tools.
Citation: Armstrong MJ, Rastgardani T, Gagliardi AR . Barriers and facilitators of communication about off periods in Parkinson's disease: qualitative analysis of patient, carepartner, and physician Interviews. PLoS One 2019 Apr 18;14(4):e0215384. doi: 10.1371/journal.pone.0215384..
Keywords: Communication, Clinician-Patient Communication, Neurological Disorders, Caregiving, Education: Patient and Caregiver, Health Literacy, Patient and Family Engagement
McCarron HR, Finlay JM, Sims T
Stakeholder engagement to enhance interventions for family caregivers of people with dementia: a case study of care to plan.
This study discusses a case study that uses a community advisory board (CAB) to help interventions for family caregivers of people with dementia. The intervention used is an online dementia caregiver resource called Care to Plan. Transcripts of seven CAB meetings over a 3-year period were reviewed. They looked at: how meetings were conducted and issues that arose; and Care to Plan improvements, how CAB members provided key stakeholder perspectives that resulted in changes in language, functionality, substance and dissemination.
Citation: McCarron HR, Finlay JM, Sims T . Stakeholder engagement to enhance interventions for family caregivers of people with dementia: a case study of care to plan. J Gerontol Soc Work 2019 Jan;62(1):29-47. doi: 10.1080/01634372.2018.1505797..
Keywords: Caregiving, Dementia, Neurological Disorders, Patient and Family Engagement
McCreedy E, Loomer L, Palmer JA
Representation in the care planning process for nursing home residents with dementia.
This study examined the participation of residents, family members, or representatives in nursing home (NH) long-term care planning for residents with cognitive impairment. A large for-profit NH system was used to recruit study participants. A sample of 18,552 long-stay NH residents in 2016 were surveyed. Of residents with no cognitive impairment, 8% had family or representative participation in care planning, compared with 26% of residents with severe impairments. Family participation was greater in NHs with more social workers.
Citation: McCreedy E, Loomer L, Palmer JA . Representation in the care planning process for nursing home residents with dementia. J Am Med Dir Assoc 2018 May;19(5):415-21. doi: 10.1016/j.jamda.2018.01.004..
Keywords: Dementia, Nursing Homes, Long-Term Care, Patient and Family Engagement, Neurological Disorders