scholarly journals Preliminary Findings of a National Survey of Black ADRD Family Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 279-279
Author(s):  
Florence Johnson ◽  
Nicholas Mazzara ◽  
Kayla DeMarco ◽  
Ivaylo Dinov ◽  
Sheria Robinson-Lane
Keyword(s):  
Family Caregivers ◽  
Correlation Coefficients ◽  
Social Media Marketing ◽  
Care Needs ◽  
Caregiver Support ◽  
Electronic Survey ◽  
New Family ◽  
Diet And Exercise ◽  
Positive Aspects Of Caregiving ◽  
Data Elements

Abstract The National Caregiver Survey aims to capture a representative sample of Black Alzheimer’s disease and/or related dementias (ADRD) family caregivers who are 55+ to better understand the relationships between adaptation to caregiving, coping, and health. Following targeted social media marketing, ADRD family caregivers (n=60) completed an electronic survey capturing over 200 data elements. Analysis was completed using Spearman correlation coefficients. Preliminary results suggest that 55% of participants were hypertensive (n=33) and 27% (n=16) had diabetes. Participants were generally overweight with an average BMI of 29. 28% (n=17) of the sample were smokers. A negative correlation was identified between the level of care needs of the recipients (IADLs) and alcohol use (p=0.037). There was also a correlation between identifying positive aspects of caregiving and adaptive coping (p=0.045). Caregiver support programs should facilitate development of effective coping strategies for new family caregivers, with particular attention on smoking cessation, brain-healthy diet, and exercise.

The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

2020 ◽  
pp. 026921632096759
Author(s):  
Fenella J Gill ◽  
Zahraa Hashem ◽  
Roswitha Stegmann ◽  
Samar M Aoun
Keyword(s):  
Palliative Care ◽  
Scoping Review ◽  
English Language ◽  
Support Needs ◽  
Care Needs ◽  
Caregiver Support ◽  
Paediatric Palliative Care ◽  
Heterogenous Population ◽  
Parent Caregivers ◽  
The Individual

Background: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers’ needs. Aim: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. Design: A scoping review Data sources: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). Results: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. Conclusion: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.

scholarly journals Family Physician’s and Primary Care Team’s Perspectives on Supporting Family Caregivers in Primary Care Networks

2021 ◽  
Vol 18 (6) ◽  
pp. 3293
Author(s):  
Jasneet Parmar ◽  
Sharon Anderson ◽  
Marjan Abbasi ◽  
Saeed Ahmadinejad ◽  
Karenn Chan ◽  
...  
Keyword(s):  
Primary Care ◽  
Family Caregivers ◽  
Healthcare Providers ◽  
Family Physicians ◽  
Care Team ◽  
Primary Care Team ◽  
Caregiver Support ◽  
Team Members ◽  
Primary Care Teams ◽  
Support Family

Background. Research, practice, and policy have focused on educating family caregivers to sustain care but failed to equip healthcare providers to effectively support family caregivers. Family physicians are well-positioned to care for family caregivers. Methods. We adopted an interpretive description design to explore family physicians and primary care team members’ perceptions of their current and recommended practices for supporting family caregivers. We conducted focus groups with family physicians and their primary care team members. Results. Ten physicians and 42 team members participated. We identified three major themes. “Family physicians and primary care teams can be a valuable source of support for family caregivers” highlighted these primary care team members’ broad recognition of the need to support family caregiver’s health. “What stands in the way” spoke to the barriers in current practices that precluded supporting family caregivers. Primary care teams recommended, “A structured approach may be a way forward.” Conclusion. A plethora of research and policy documents recommend proactive, consistent support for family caregivers, yet comprehensive caregiver support policy remains elusive. The continuity of care makes primary care an ideal setting to support family caregivers. Now policy-makers must develop consistent protocols to assess, and care for family caregivers in primary care.

scholarly journals Positive Aspects of Caregiving Among Family Caregivers of Individuals With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 358-359
Author(s):  
Mary Grace Asirot ◽  
Anna Papazyan ◽  
Yeonsu Song
Keyword(s):  
Mental Health ◽  
Sleep Quality ◽  
Family Caregivers ◽  
Care Recipient ◽  
Related Factors ◽  
Negative Experience ◽  
Care Recipients ◽  
Positive Aspects Of Caregiving ◽  
Positive Caregiving ◽  
And Behavior

Abstract Traditionally, caregiving for individuals with dementia has been viewed as a negative experience. Understanding positive aspect of caregiving and related factors is important to improve health among family caregivers. We analyzed baseline data from an ongoing dyadic sleep education trial for individuals with dementia and their caregivers (N=21 dyads; mean age 70.8± 11.1 for caregivers, 80.5± 8.3 for care-recipients). The Positive Aspects of Caregiving (PAC 9-item) was used to assess subjective satisfaction with caregiving. Other measures included Zarit Burden Interview (ZBI), SF-12 Health Survey (SF-12v2), Revised Memory and Behavior Problems Checklist (RMBPC), and Pittsburgh Sleep Quality Index (PSQI). Pearson correlations and t-tests were calculated for analyses. Caregivers most frequently endorsed that caregiving enabled them to appreciate life more (n=16 agreed a lot). Caregivers who began providing care within the first few months of the care-recipient needing care (n=16) had greater positive aspects of caregiving than those who started providing care sometime later (n=5) (36.37±7.33 versus 25.8±8.29, p=0.01). Caregivers with higher PAC scores had lower ZBI score (r=-0.49, p=0.02), better mental health on the SF-12v2 (r=0.53, p=0.01), less distress related to care-recipient behaviors on the RMBPC (r=-0.50, p=0.02), and lower PSQI subscale (perceived sleep quality) score (r= -0.46, p=0.04). Findings suggest that higher positive caregiving experience was associated with better mental health and sleep quality, and less burden and distress from the care-recipients behaviors. More research is needed to better understand this relationship and to determine possible interventions to increase positive aspects of caregiving.

scholarly journals Supporting home hospice family caregivers: Insights from different perspectives

2017 ◽  
Vol 16 (2) ◽  
pp. 209-219 ◽  
Author(s):  
Lee Ellington ◽  
Kristin G. Cloyes ◽  
Jiayun Xu ◽  
Lanell Bellury ◽  
Patricia H. Berry ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Hospice Care ◽  
Critical Role ◽  
Further Education ◽  
Hospice Nurses ◽  
Caregiver Support ◽  
Team Members ◽  
Expert Teaching ◽  
Family Centered ◽  
Thought Leaders

ABSTRACTObjective:Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support.Method:Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups.Results:Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p < 0.05).Significance of Results:Our findings suggest differences in priorities for caregiver support across family caregivers, hospice nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.

The Role of Specialty Palliative Care for Amyotrophic Lateral Sclerosis

2021 ◽  
pp. 104990912110493
Author(s):  
Anish Sethi ◽  
Elyse Everett ◽  
Ambereen Mehta ◽  
Jessica Besbris ◽  
Christa Burke ◽  
...  
Keyword(s):  
Palliative Care ◽  
Amyotrophic Lateral Sclerosis ◽  
Motor Neurons ◽  
Symptom Management ◽  
Medical Specialty ◽  
Care Needs ◽  
Discussion Section ◽  
Caregiver Support ◽  
Hard Times ◽  
Lateral Sclerosis

Amyotrophic Lateral Sclerosis (ALS) is a progressive and incurable neurodegenerative disease resulting in the loss of motor neurons, eventually leading to death. ALS results in complex physical, emotional, and spiritual care needs. Specialty Palliative Care (SPC) is a medical specialty for patients with serious illness that provides an extra layer of support through complicated symptom management, goals of care conversations, and support to patients and families during hard times. Using MEDLINE, APA Psychinfo, and Dynamed databases, we reviewed the literature of SPC in ALS to inform and support an expert opinion perspective on this topic. This manuscript focuses on several key areas of SPC for ALS including insurance and care models, advance care planning, symptom management, quality of life, caregiver support, and end-of-life care. Recommendations to improve specialty palliative care for patients with ALS are reviewed in the discussion section.

scholarly journals Family caregiver support—a facilitator to empower family caregivers

2021 ◽  
Vol 31 (Supplement_2) ◽  
Author(s):  
Sílvia Fernandes ◽  
Paula Portugal ◽  
Lhara Mullins ◽  
Martin Power ◽  
Marina Letica-Crepulja ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Family Caregiver ◽  
Medical Information ◽  
Social Care ◽  
Emotional Health ◽  
Family Members ◽  
Mobile App ◽  
Caregiver Support ◽  
Support Strategies ◽  
Health Disorders

Abstract Background Mental disorders are highly prevalent, placing an enormous burden on individuals, society and economy. Research shows that family members who provide care to individuals with chronic or disabling mental conditions are themselves at risk. As a response to this problem, the project ‘Family Caregiver Support - Strategies and tools to promote the mental and emotional health of caregivers’ emerged, funded by Erasmus + Program and carried out by 8 European partners including ESS|P.PORTO. Objectives To empower family members as caregivers and to give them access to relevant medical information and to psychological support for their own needs. Methods A Guide and a Resource Pack concerning 9 important mental health disorders were developed. An interactive e-platform and a mobile App were developed to make available these materials. Validation of the products was carried out, in each country, by caregivers and health/social care professionals through online questionnaires. Data were collected and processed in an anonymous manner, and the confidentiality was ensured. Results In Portugal, 98% of respondents (25 caregivers/citizens interested on subject, and 25 health/social care professionals), consider the accessibility and attractivity of the platform very good or excellent; and more than 90% consider materials very effective for the caregiver’s empowerment. Some issues were identified to add to Resource Pack. Conclusions Data from partners is being processed but there is already strong evidence of the usability and efficacy of the project’s outcome, and a strong contribution was done for adult education concerning physical, mental and emotional health promotion of family caregivers.

scholarly journals Understanding How to Support Family Caregivers of Seniors with Complex Needs

2017 ◽  
Vol 20 (2) ◽  
pp. 75-84 ◽  
Author(s):  
Lesley Charles ◽  
Suzette Brémault-Phillips ◽  
Jasneet Parmar ◽  
Melissa Johnson ◽  
Lori-Ann Sacrey
Keyword(s):  
Health Care ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Research Priorities ◽  
Care Providers ◽  
Community Based ◽  
Caregiver Support ◽  
Complex Needs ◽  
Participant Engagement

Purpose of the StudyThe purpose of this study was to describe the experiences and challenges of supporting family caregivers of seniors with complex needs and to outline support strategies and research priorities aimed at supporting them.Design and MethodsA CIHR-funded, two-day conference entitled “Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes” was held. An integrated knowledge translation approach guided this planning conference. Day 1 included presentations of research evidence, followed by participant engagement Qualitative data was collected regarding facilitators, barriers/gaps, and recommendations for the provisionof caregiver supports. Day 2 focused on determination of research priorities.ResultsIdentified facilitators to the provision of caregiver support included accessibility of health-care and community-based resources, availability of well-intended health-care providers, and recognition of caregivers by the system. Barriers/gaps related to challenges with communication, access to information, knowledge of what is needed, system navigation, access to financial resources, and current policies. Recommendations regarding caregiver services and research revolved around assisting caregivers to self-identify and seek support, formalizing caregiver supports, centralizing resources, making system navigation available, and preparing the next generation for caregiving.Implication A better understanding of the needs of family caregivers and ways to support them is critical to seniors’ health services redesign.

scholarly journals AN ACADEMIC-HEALTH SYSTEM COLLABORATION TO DEVELOP A PROGRAM FOR FAMILY CAREGIVERS OF PERSONS WITH DEMENTIA

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S439-S439
Author(s):  
Elena Siegel ◽  
Ladson Hinton ◽  
Elizabeth Rice ◽  
Nilpa Shah ◽  
Vanessa McElroy ◽  
...  
Keyword(s):  
Health System ◽  
Family Caregivers ◽  
Clinical Care ◽  
Organizational Capacity ◽  
Lessons Learned ◽  
System Level ◽  
Quality Improvement Initiative ◽  
Care Needs ◽  
Academic Practice ◽  
Time Investment

Abstract Hospitalization of persons with dementia can pose specific challenges for family caregivers, with post-discharge issues in managing acute clinical care needs coupled with dementia-related care that can exacerbate caregiver fatigue and capacity. We established an academic-practice collaboration to develop an evidence-based and innovative multi-component health system-level program to support family caregivers of persons with dementia in transition from hospital to community. Using an implementation science approach aimed to decrease the gap in translation of caregiver research into practice, we co-designed the program/implementation plan as a quality improvement initiative reflecting an integration of evidence from family caregiving literature and the health system’s unique context, workflows, stakeholder perspectives, resources, and values/priorities. This paper highlights insights gained and lessons learned in establishing a successful academic-practice collaboration, including time/investment to establish a shared project vision and identify/leverage existing organizational capacity to successfully deliver a program to improve the health and wellbeing of family caregivers.

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