Families play an important role meeting the care needs of individuals who require assistance due to illness and/or disability. Yet, without adequate support their own health and wellbeing can be ...compromised. The literature highlights the need for a move to family-centered care to improve the well-being of those with illness and/or disability and their family caregivers. The objective of this paper was to explore existing models of family-centered care to determine the key components of existing models and to identify gaps in the literature.
A scoping review guided by Arksey & O'Malley (2005) examined family-centered care models for diverse illness and age populations. We searched MEDLINE, PsycINFO, CINAHL and EMBASE for research published between 1990 to August 1, 2018. Articles describing the development of a family-centered model in any patient population and/or healthcare field or on the development and evaluation of a family-centered service delivery intervention were included.
The search identified 14,393 papers of which 55 met our criteria and were included. Family-centered care models are most commonly available for pediatric patient populations (n = 40). Across all family-centered care models, the consistent goal is to develop and implement patient care plans within the context of families. Key components to facilitate family-centered care include: 1) collaboration between family members and health care providers, 2) consideration of family contexts, 3) policies and procedures, and 4) patient, family, and health care professional education. Some of these aspects are universal and some of these are illness specific.
The review identified core aspects of family-centred care models (e.g., development of a care plan in the context of families) that can be applied to all populations and care contexts and some aspects that are illness specific (e.g., illness-specific education). This review identified areas in need of further research specifically related to the relationship between care plan decision making and privacy over medical records within models of family centred care. Few studies have evaluated the impact of the various models on patient, family, or health system outcomes. Findings can inform movement towards a universal model of family-centered care for all populations and care contexts.
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Dostopno za:
CEKLJ, DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
We conducted the first known comprehensive literature review to (1) identify, categorize, and summarize the existing knowledge about the experiences of older persons and their caregivers during ...conflict situations; (2) identify the support needs of older persons and their caregivers, and; (3) identify gaps in the literature and understanding that may inform future research.
A scoping review methodology of academic peer-reviewed and gray English language literature was employed using six academic literature databases and one gray literature database. We further performed comprehensive searches of relevant search engines and organization websites and bibliographic hand searches to identify additional academic and gray literature. Two authors screened for eligibility of identified studies and documents. One reviewer extracted data regarding authors, article type, geographic origin, key participant characteristics, aims, study design and data collection method, results, conclusions and limitations. Data were analyzed thematically.
83 documents met this review's inclusion criteria, including 21 academic documents and 62 from the gray literature. Thematic analysis revealed that conflict situations exacerbate existing inequalities experienced by older persons. Within this overarching theme were three interconnected sub-themes: (1) Older adults are particularly vulnerable during conflict situations; (2) Older persons are inadequately supported in conflict situations; (3) In the face of great challenges, many older adults still manage to endure through conflict situations. We identified 15 recommendations from the reviewed documents to better support older adults in conflict situations.
Existing inequalities, such as ageism and ableism, targeted discrimination, and poor health outcomes, become exacerbated during conflict situations, resulting in older persons being less able to flee and meet their daily needs with sufficient access to necessities and healthcare. Little is known of the experiences and needs of family caregivers during conflict situations. We identified several opportunities to improve the experience and support of older persons in conflict situations.
Health care solutions are needed to meet the need of an ageing population. Health care champions are people who endorse the adoption of new initiatives being implemented within health care settings. ...Although the role of champions has been cited as key to the success of numerous community-based interventions implemented to improve the care of older adults with chronic conditions, no synthesis of their implementation experiences have been conducted. We report on a scoping review protocol that will be applied to collect evidence on the role of champions within community-based health interventions to support older adults with chronic conditions. Specifically, we will identify how the term 'champion' is used and defined (i.e., conceptualized) and identify the roles (i.e., professional background) and functions of champions (i.e., responsibilities). We will also explore how this role impacts program implementation. This is a scoping review protocol informed by guidelines for Scoping Reviews (PRISMA-ScR) and a six-stage scoping review methodology. Peer-review literature will be retrieved from Medline, CINAHL, PubMed, PsycInfo, Cochrane JBI and Scopus databases, using a peer-reviewed search strategy developed in collaboration with an Information Specialist. The scoping review will consider all empirical studies published in English. Two reviewers will pilot-test the screening criteria and data abstraction forms, and then independently screen the literature. Extracted data will be analyzed numerically and thematically. Self-identified champions will be consulted to refine the practice recommendations from this work. This scoping review will broadly and systematically identify, define and expand existing knowledge on champions' impact in implementing community-based interventions to support older adults with chronic conditions. We anticipate that our results will lead to a greater understanding of the characteristics and role champions play within these interventions, which will be relevant to a wide range of knowledge users, including researchers, decision-makers, and health care providers.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Older adults with hearing loss struggle to communicate with care providers and experience higher mortality rates when hospitalized (Genther et al., 2015), even after controlling for age and ...comorbidities. Personal hearing amplifiers (PHAs), (e.g., Pocketalkers™), can improve communication with older patients.
We conducted a scoping review to identify research gaps and summarize findings on the clinical use of PHAs with patients with hearing loss. After refining search terms relating to hearing loss and PHAs, we searched MEDLINE, Embase, PsycINFO, Cochrane Library, CINAHL Complete, Web of Science Core Collection, ERIC (Proquest), PubMed, ClinicalTrials.gov, International Clinical Trials Registry Platform, and the International Standard Randomised Controlled Trial Number Registry. We identified articles published in English between 1980 and 2022 that reported empirical outcomes relating to PHA use in clinical settings. Two reviewers independently extracted data from articles. We then organized data into an evidence map, and a narrative review summarizing outcomes.
From 4234 initially identified titles and abstracts, 12 met our criteria as full texts. These included three surveys on clinicians' awareness and use of PHAs, one evaluation of the acoustic output of a PHA, and eight interventions wherein PHAs were provided to patients with hearing loss. These papers used 10 different terms for PHAs and largely did not cite one another. Results showed high levels of satisfaction with PHAs, and consistently improved speech understanding. Despite this, care providers used devices inconsistently, with challenges around provider awareness, and device maintenance and location tracking.
PHAs have a consistent positive effect on patients' ability to understand their care providers despite hearing loss. Barriers and facilitators to their use in clinical settings should be further explored.
There is a growing population of adults aged 50 years or older living with HIV, facing unique challenges in care due to age, minority status, and stigma. Co-design methodologies, aligning with ...patient-centered care, have potential for informing interventions addressing the complex needs of older adults with HIV. Despite challenges, co-design has shown promise in empowering older individuals to actively participate in shaping their care experiences. The scoping review outlined here aims to identify gaps in existing co-design work with this population, emphasizing the importance of inclusivity based on PROGRESS-Plus characteristics for future patient-oriented research. This scoping review protocol is informed by the Joanna Briggs Institute Manual to explore co-design methods in geriatric HIV care literature. The methodology encompasses six stages: 1) developing research questions, 2) creating a search strategy, 3) screening and selecting evidence, 4) data extraction, 5) data analysis using content analysis, and 6) consultation with key stakeholders, including community partners and individuals with lived experience. The review will involve a comprehensive literature search, including peer-reviewed databases and gray literature, to identify relevant studies conducted in the past 20 years. The inclusive criteria focus on empirical data related to co-design methods in HIV care for individuals aged 50 or older, aiming to inform future research and co-design studies in geriatric HIV care. The study will be limited by the exclusion of papers not published or translated to English. Additionally, the varied terminology used to describe co-design across different research may result in the exclusion of articles using alternative terms. The consultation with key stakeholders will be crucial for translating insights into meaningful co-design solutions for virtual HIV care, aiming to provide a comprehensive synthesis that informs evidence-based strategies and addresses disparities in geriatric HIV care.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
A growing body of evidence suggests that older adults are particularly vulnerable to poor care as they transition across care environments. Thus, they require transitional care services as they ...transition across healthcare settings. To help make intervention research meaningful to the older adults the intervention aims to serve, many researchers aim to study their experiences, by actively involving them in research processes. However, collecting data from older adults with various forms of disability often assumes that the research methods selected are appropriate for them. This scoping review will map the evidence on research methods to collect data from older adults with disabilities within the transitional care literature. The proposed scoping review follows the framework originally described by the Joanna Briggs Institute (JBI) Manual: (1) developing a search strategy, (2) evidence screening and selection, (3) data extraction; and (4) analysis. We will include studies identified through a comprehensive search of peer-reviewed and empirical literature reporting on research methods used to elicit the experiences of older adults with disabilities in transitional care interventions. In addition, we will search the reference lists of included studies. The findings of this review will be narratively synthesized. The Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews will guide the reporting of the methods and results. The overarching goal of this study is to develop strategies to assist the research community in increasing the inclusion of older adults with disabilities in transitional care research. The findings of this review will highlight recommendations for research to inform data collection within future intervention research for older adults with disabilities. Study findings will be disseminated via a publication and presentations.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Co-design methodology seeks to actively engage end-users in developing interventions. It is increasingly used to design stroke interventions; however, limited guidance exists, particularly with/for ...individuals with stroke who have diverse cognitive, physical and functional abilities. Thus, we describe 1) the extent of existing research that has used co-design for stroke intervention development and 2) how co-design has been used to develop stroke interventions among studies that explicitly used co-design, including the rationale, types of co-designed stroke interventions, participants involved, research methodologies/approaches, methods of incorporating end-users in the research, co-design limitations, challenges and potential strategies reported by researchers.
A scoping review informed by Joanna Briggs Institute and Arksey & O'Malley methodology was conducted by searching nine databases on December 21, 2022, to locate English-language literature that used co-design to develop a stroke intervention. Additional data sources were identified through a hand search. Data sources were de-duplicated, and two research team members reviewed their titles, abstracts and full text to ensure they met the inclusion criteria. Data relating to the research objectives were extracted, analyzed, and reported numerically and descriptively.
Data sources used co-design for stroke intervention development with (n = 89) and without (n = 139) explicitly using the term 'co-design.' Among studies explicitly using co-design, it was commonly used to understand end-user needs and generate new ideas. Many co-designed interventions were technology-based (65%), and 48% were for physical rehabilitation or activity-based. Co-design was commonly conducted with multiple participants (82%; e.g., individuals with stroke, family members/caregivers and clinicians) and used various methods to engage end-users, including focus groups and workshops. Limitations, challenges and potential strategies for recruitment, participant-engagement, contextual and logistical and ethics of co-designed interventions were described.
Given the increasing popularity of co-design as a methodology for developing stroke interventions internationally, these findings can inform future co-designed studies.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
There is a digital divide in long-term care homes (LTCHs), with few residents having regular access to internet-connected devices. In this study, we provided long-term care residents with ...personalized and adapted tablets. We aimed to understand what factors influenced tablet use and the impact of tablet access on opportunities for social connection and recreation.
A pragmatic, mixed-methods multicenter, open-label, uncontrolled interventional study with assessment of outcomes at baseline and 3 months.
A total of 58 resident-care partner dyads were recruited across 7 LTCHs in Ontario, Canada. The main inclusion criterion was having a care partner willing to participate, and we excluded residents who already had an internet-connected device.
Resident demographics, functional status assessments, and recreational engagement were captured using items from the Resident Assessment Instrument/Minimum Data Set. Care partners completed a questionnaire about relational closeness and site leads assessed resident quality of life before and approximately 3 months after tablet distribution. Interviews with 23 care partners and 7 residents post-implementation were completed and analyzed.
The median tablet use by participants was 7 minutes (interquartile range 27) per day on average over the study period. Predictors of higher tablet use were younger age, higher cognitive functioning, absence of hearing impairment, and having a care partner who lives farther away. There was no improvement on quantitative measures of quality of life, recreation, or relational closeness. In interviews, participants identified many different opportunities afforded by access to personalized tablets.
Some LTCH residents without current access to the internet benefit from being provided a personal tablet and use it in a variety of ways to enrich their lives. There is a critical need to bridge the digital divide for this population.
Abstract
Background and Objectives
System navigation programs are becoming more available to meet the needs of patients with complex care needs. The aim of this review was to systematically assess ...the outcomes of navigation programs for persons with dementia and their family caregivers.
Research Design and Methods
A systematic review methodology was employed. Ten databases were searched for all relevant articles published until October 30, 2021. English-language full-text articles were included if they focused on implemented navigation program(s) that primarily supported persons with dementia who were aged 50 or older. Methodological quality was assessed by 2 independent raters using the Physiotherapy Evidence Database Scale, the STrengthening the Reporting of OBservational studies in Epidemiology checklist, and the Mixed Methods Appraisal Tool.
Results
Fourteen articles were included in the review. There was Level 1 evidence for the benefits of system navigation programs on delaying institutionalization, wherein benefits appeared to be specific to interventions that had an in-person component. There was Level 1 (n = 4) and Level 3 (n = 1) evidence on service use from time of diagnosis to continued management of dementia. Finally, Level 1 to Level 5 evidence indicated a number of benefits on caregiver outcomes.
Discussion and Implications
There is strong evidence on the benefits of system navigation for people with dementia on delaying institutionalization and caregiver outcomes, but outcomes across other domains (i.e., functional independence) are less clear, which may be due to the varied approaches within system navigation models of care.
Caregivers of individuals with Alzheimer's disease require support across the full disease trajectory. The aim of this study was to develop a conceptual framework of caregiving phases across the ...Alzheimer's disease and caregiving trajectories and the corresponding caregiver support needs.
Constructivist grounded theory informed data collection and analysis. 40 spousal (n = 20) and adult children (n = 20) caregivers were interviewed. Recruitment was completed when theoretical saturation was achieved. Member-checking interviews occurred with 10 participants.
Participants described five phases of caregiving related to their responsibilities to support people with Alzheimer's disease including monitoring initial symptoms, navigating their diagnosis, assisting with instrumental activities of daily living, assisting with basic activities of daily living, and preparing for the future. Support (i.e., informational, emotional, instrumental, and appraisal) needs were often specific to the phase of care. For example, during the initial symptoms phase, caregivers reported needing information to assist them to distinguish normal aging from cognitive impairment. In contrast, during the preparing for the future phase, caregivers emphasized support for accessing institutional long term-care placement.
Findings highlight caregiver-identified phases of caregiving and corresponding support needs across the Alzheimer's disease trajectory. Findings can inform the development, evaluation and implementation of programs and services to meet caregivers' changing needs across the disease trajectory.
IMPLICATIONS FOR REHABILITATION
Caregivers for individuals with Alzheimer's disease can experience distinct caregiving phases across the disease trajectory with corresponding support needs.
Rehabilitation clinicians can use these findings to help caregivers navigate available supports at appropriate times to ensure that their needs are addressed across the disease trajectory.
Occupational therapists and other rehabilitation professionals can enable caregivers with timely education and support as they progress across the disease trajectory.
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