Background:The number of people living with dementia (PWD) is increasing worldwide, corresponding with an increasing number of caregivers for PWD. This study aims to identify and describe the literature surrounding the needs of caregivers of PWD and the solutions identified to meet these needs.Method:A literature search was performed in: PsycInfo, Medline, CINAHL, SCIELO and LILACS, January 2007–January 2018. Two independent reviewers evaluated 1,661 abstracts, and full-text screening was subsequently performed for 55 articles. The scoping review consisted of 31 studies, which were evaluated according to sociodemographic characteristics, methodological approach, and caregiver’s experiences, realities, and needs. To help extract and organize reported caregiver needs, we used the C.A.R.E. Tool as a guiding framework.Results:Thirty-one studies were identified. The most common needs were related to personal health (58% emotional health; 32% physical health) and receiving help from others (55%). Solutions from the articles reviewed primarily concerned information gaps (55%) and the education/learning needs of caregivers (52%).Conclusion:This review identified the needs of caregivers of PWD. Caregivers’ personal health emerged as a key area of need, while provision of information was identified as a key area of support. Future studies should explore the changes that occur in needs over the caregiving trajectory and consider comparing caregivers’ needs across different countries.
Background Nav-CARE is a volunteer-led intervention designed to build upon strategic directions in palliative care: a palliative approach to care, a public health/compassionate community approach to care, and enhancing the capacity of volunteerism. Nav-CARE uses specially trained volunteers to provide lay navigation for older persons and family living at home with advanced chronic illness. The goal of this study was to better understand the implementation factors that influenced the utilization of Nav-CARE in eight diverse Canadian contexts. Methods This was a Knowledge to Action study using the planned action cycle for Nav-CARE developed through previous studies. Participants were eight community-based hospice societies located in diverse geographic contexts and with diverse capacities. Implementation data was collected at baseline, midpoint, and endpoint using qualitative individual and group interviews. Field notes of all interactions with study sites were also used as part of the data set. Data was analyzed using qualitative descriptive techniques. The study received ethical approval from three university behavioural review boards. All participants provided written consent. Results At baseline, stakeholders perceived Nav-CARE to be a good fit with the strategic directions of their organization by providing early palliative support, by facilitating outreach into the community and by changing the public perception of palliative care. The contextual factors that determined the ease with which Nav-CARE was implemented included the volunteer coordinator champion, organizational capacity and connection, the ability to successfully recruit older persons, and the adequacy of volunteer preparation and mentorship. Conclusions This study highlighted the importance of community-based champions for the success of volunteer-led initiatives and the critical need for support and mentorship for both volunteers and those who lead them. Further, although the underutilization of hospice has been widely recognized, it is vital to recognize the limitations of their capacity. New initiatives such as Nav-CARE, which are designed to enhance their contributions to palliative care, need to be accompanied by adequate resources. Finally, this study illustrated the need to think carefully about the language and role of hospice societies as palliative care moves toward a public health approach to care.
Background Implementing community-based innovations for older adults with serious illness, who are appropriate for a palliative approach to care, requires developing partnerships between health and community. Nav-CARE is an evidence-based innovation wherein trained volunteer navigators advocate, facilitate community connections, coordinate access to resources, and promote active engagement of older adults within their communities. Acknowledging the importance of partnerships between organizations, the aim of our study was to use the Consolidated Framework for Implementation Research (CFIR) to explore organizational (Inner Setting) and community or health system level (Outer Setting) barriers and facilitators to Nav-CARE implementation. Methods Guided by CFIR, qualitative individual and group interviews were conducted to examine the implementation of Nav-CARE in a Canadian community. Participants were individuals who delivered or managed Nav-CARE research, and stakeholders who provided services in the community. The Framework Method was used to analyse the data. Particular attention was paid to the host organization’s external network and community context. Results Implementation was affected by several inter-related CFIR domains, making it difficult to meaningfully separate key findings by only inner and outer settings. Thus, findings were organized into themes informed by CFIR, that cut across other domains and incorporated inductive findings: intraorganizational perceptions of Nav-CARE; public and healthcare professionals’ perceptions of palliative care; interorganizational partnerships and relationships; community and national-level factors that should have facilitated Nav-CARE implementation; and suggested changes to Nav-CARE. Themes demonstrated barriers to implementing Nav-CARE, such as poor organizational readiness for implementation, and public and health provider perceptions palliative care was synonymous with fast-approaching death. Conclusions Implementation science frameworks and theories commonly focus on assessing implementation of innovations within facilities and changing behaviours of individuals within that organizational structure. Implementation frameworks need to be adapted to better assess Outer Setting factors that affect implementation of community-based programs. Although applying the CFIR helped uncover critical elements in the Inner and Outer Settings that affected implementation of Nav-CARE. Our study suggests that the CFIR could expand the Outer Setting to acknowledge and assess organizational structures and beliefs of individuals within organizations external to the host organization who impact successful implementation of community-based innovations.
Palliative care has become an increasingly important public health issue due to the rising acceptance of implementing a health promoting palliative care approach. To explore communication pathways that would facilitate implementation of this approach, we conducted a scoping review examining communication and enactment of care plans for older adults with life-limiting illnesses across health, social and community sectors. We used a scoping review methodology to map the current literature on communication plans between primary care and other sectors (community, health, and social). Five databases were searched MEDLINE (ovid), CINAHL (EBSCO), EMBASE (Elsevier), PsychInfo (EBSCO), and Scopus. The database search identified 5,289 records, after screening and hand-searching a total of 28 articles were extracted. Three major themes were determined through the records: (1) the importance of professional relationships across sectors, (2) the importance of community navigators in sharing the care plan, and (3) and creating comprehensive and multidisciplinary care plans. Findings suggested that enacting quality care plans is important to healthcare providers; the use of an electronic health records system can be useful in ensuring that all healthcare and community systems are in place to aid patients for better community-based care. Community navigators were also key to ensure that plans are communicated properly and efficiently. Further research is needed to determine how having a clear and properly implemented communication system for a healthcare system could facilitate community sector involvement in implementing care plans.
Background: Volunteer programs that support older persons can assist them in accessing healthcare in an efficient and effective manner. Community-based initiatives that train volunteers to support patients with advancing illness is an important advance for public health. As part of implementing an effective community-based volunteer-based program, volunteers need to be sufficiently trained. Online training could be an effective and safe way to provide education for volunteers in both initial training and/or continuing education throughout their involvement as a volunteer.Method: We conducted an integrative review that synthesized literature on online training programs for volunteers who support older adults. The review included both a search of existing research literature in six databases, and an online search of online training programs currently being delivered in Canada. The purpose of this review was to examine the feasibility and acceptability of community-based organizations adopting an online training format for their volunteers.Results: The database search identified 13,626 records, these went through abstract and full text screen resulting in a final 15 records. This was supplemented by 2 records identified from hand searching the references, for a total of 17 articles. In addition to identifying Volunteers Roles and Responsibilities; Elements of Training; and Evaluation of Feasibility and Acceptability; a thematic analysis of the 17 records identified the categories: (1) Feasibility Promoting Factors; (2) Barriers to Feasibility; (3) Acceptability Promoting Factors; and (4) Barriers to Acceptability. Six programs were also identified in the online search of online training programs. These programs informed our understanding of delivery of existing online volunteer training programs.Discussion: Findings suggested that feasibility and acceptability of online training were promoted by (a) topic relevant training for volunteers; (b) high engagement of volunteers to prevent attrition; (c) mentorship or leadership component. Challenges to online training included a high workload; time elapsed between training and its application; and client attitude toward volunteers. Future research on online volunteer training should consider how online delivery can be most effectively paced to support volunteers in completing training and the technical skills needed to complete the training and whether teaching these skills can be integrated into programs.
Chronic Obstructive Pulmonary Disease (COPD) is a leading cause of morbidity and mortality (Vogelmeier et al., 2017). Adherence to prescribed medications and adequate medication inhalation technique (MIT) is critical for optimal management of COPD, as is the proper use of the medication delivery device.O’Conor et al. (2019) found that lower health literacy (HL) was associated with both poor medication adherenceand MIT. HL, according to the Process-Knowledge Model, consists of both processing capacity and knowledge (Chin et al., 2017). COPD most commonly occurs in older adults (Cazzola, Donner, & Hanania, 2007). Older adults tend to have lower processing capacity (Chin et al., 2017). The purpose of this study was to determine if HL was associated with medication refill adherence (MRA)and/or MIT. Fifty-seven participants completed a questionnaire package that included demographic questions, measures of HL, and assessments of MRA and MIT. A subset of twenty patients participated in qualitative interviews. Results indicated that lower HL was associated with both lower MRA and poor MIT, and qualitative findings revealed the need for further information. Future research should focus on testing educational materials that have been designed and/or reformatted to meet the lower processing capacity of older adults.
Background More than 15 million Americans provide unpaid care for persons with Alzheimer disease or other related dementias (ADRD). While there is good evidence to suggest that caregivers benefit from psychosocial interventions, these have primarily been delivered via face-to-face individual or group format. Alternatively, offering electronic health (eHealth) interventions may assist caregivers in providing quality care while remaining in good health. Research to date has generated little knowledge about what app features support ADRD caregivers’ behavioral changes and how developers might optimize features over the long term. Objective There is an evident knowledge gap in the current landscape of commercially available apps, their integration of behavioral techniques, content focus, and compliance with usability recommendations. This paper systematically reviews and inventories the apps caregivers might typically be exposed to and determines the support integrated into the apps and their functionality for older adults. Methods The search strategy was designed to mimic typical Web-based health information-seeking behavior for adults. Apps were included based on their explicit focus on ADRD caregiver knowledge and skill improvement. Two coders with expertise in behavioral interventions and eHealth pilot-tested the data extraction. One coder retained app characteristics and design features. Techniques used to promote change were determined, and 2 questions from the Mobile App Rating Scale were used to assess the app credibility and evidence base. Content topics were evaluated using a thematic framing technique, and each app was assessed using a usability heuristic checklist. Results The search results generated 18 unique apps that met the inclusion criteria. Some apps were unavailable, and only 8 unique apps were reviewed. Of the 8, 7 (88%) apps did not state which scientific orientation was followed to develop their content. None of the apps made clinical claims of improving caregivers’ and care recipients’ overall health. All apps relied on textual information to disseminate their contents. None of the apps was trialed and evidence based. Apps included on average 7 out of 10 behavioral change techniques, 5 out of 10 C.A.R.E. (Caregivers, Aspirations, Realities, and Expectations) features, and 10 out of 18 features on the usability heuristics checklist. Conclusions Our findings suggest that caregivers are likely to discover apps that are not actually accessible and have low or no evidence base. Apps were found to be largely static, text-based informational resources, and few supported behaviors needed to maintain caregivers’ health. While apps may be providing a high volume of information, caregivers must still navigate what resources they need with limited guidance. Finally, the commercial marketplace is addressing some of the major usability elements, but many design elements are n...
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