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Difficult Decisions for Older Canadians Receiving Home Care, and Why They Are So Difficult: A Web-Based Decisional Needs Assessment.

ABSTRACT: Background. Older adults receiving home care services often face decisions related to aging, illness, and loss of autonomy. To inform tailored shared decision making interventions, we assessed their decisional needs by asking about the most common difficult decisions, measured associated decisional conflict, and identified factors associated with it. Methods. In March 2020, we conducted a cross-sectional survey with a pan-Canadian Web-based panel of older adults (≥65 y) receiving home care services. For a difficult decision they had faced in the past year, we evaluated clinically significant decisional conflict (CSDC) using the 16-item Decisional Conflict Scale (score 0-100) with a >37.5 cutoff. To identify factors associated with CSDC, we performed descriptive, bivariable, and multivariable analyses using the stepwise selection method with an assumed entry and exit significance level of 0.15 and 0.20, respectively. Final model selection was based on the Bayesian information criterion. Results. Among 460 participants with an average age of 72.5 y, difficult decisions were, in order of frequency, about housing and safety (57.2%), managing health conditions (21.8%), and end-of-life care (8.3%). CSDC was experienced by 14.6% (95% confidence interval [CI]: 11.5%, 18.1%) of respondents on all decision points. Factors associated with CSDC included household size = 1 (OR [95% CI]: 1.81 [0.99, 3.33]; P = 0.27), household size = 3 (2.66 [0.78, 8.98]; P = 0.83), and household size = 4 (6.91 [2.23, 21.39]; P = 0.014); preferred option not matching the decision made (4.05 [2.05, 7.97]; P < 0.001); passive role in decision making (5.13 [1.78, 14.77]; P = 0.002); and lower quality of life (0.70 [0.57, 0.87]; P<0.001). Discussion. Some older adults receiving home care services in Canada experience CSDC when facing difficult decisions. Shared decision-making interventions could mitigate associated factors.

Highlights

This is the first study in Canada to assess the decisional needs of older adults receiving care at home and to identify their most common difficult decisions.Difficult decisions most frequently made were about housing and safety. The most significant decisional conflict was experienced by people making decisions about palliative care.When their quality-of-life score was low, older adults experienced clinically significant decision conflict.

SUBMITTER: Toi AK

PROVIDER: S-EPMC9483974 | biostudies-literature | 2022 Jul-Dec

REPOSITORIES: biostudies-literature

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Difficult Decisions for Older Canadians Receiving Home Care, and Why They Are So Difficult: A Web-Based Decisional Needs Assessment.

Toi Alfred Kodjo AK Ben Charif Ali A Lai Claudia C Ngueta Gérard G Plourde Karine V KV Stacey Dawn D Légaré France F

MDM policy & practice 20220701 2

<b>Background.</b> Older adults receiving home care services often face decisions related to aging, illness, and loss of autonomy. To inform tailored shared decision making interventions, we assessed their decisional needs by asking about the most common difficult decisions, measured associated decisional conflict, and identified factors associated with it. <b>Methods.</b> In March 2020, we conducted a cross-sectional survey with a pan-Canadian Web-based panel of older adults (≥65 y) receiving h ...[more]

PMID: 36132436

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Project description:Rationale & objectiveAttention to geriatric impairments is not routinely provided to older adults receiving dialysis. Our objective was to identify patient and personnel perspectives on experiences with geriatric problems, unmet needs that may affect a patient's ability to maintain his or her functional status, and preferences for design of a geriatric model of care tailored to address the unmet needs.Study designQualitative study using semi-structured interviews and focus groups.Setting & participants14 hemodialysis patients 55 years and older and 24 dialysis unit personnel (eg, nephrologists, nurses, patient care technicians, and social workers) representing 5 dialysis units.Analytical approachContent analysis to identify themes reflecting unmet needs and design considerations for a geriatric model of care for older adults receiving dialysis.Results4 themes (or unmet needs) identified from both patient and personnel transcripts were: (1) mobility, which referred to the insufficient mobility assessment and transportation services; (2) medications, which referred to insufficient attention to appropriate prescribing and medication self-management; (3) social support, which referred to insufficient support for activities of daily living and emotional problems; and (4) communication, which referred to insufficient patient-provider and interprofessional communication, including data transfer across separate health systems. Although participants generally acknowledged that an integrated model of care could result in benefits across all 4 areas of unmet need, they noted that the program design would need to minimize disruption of current workflow and practices in dialysis units.LimitationsThe findings may not be broadly representative of all older adults receiving dialysis and dialysis unit personnel.ConclusionsThere is insufficient attention to mobility, medication management, social support, and communication needs for older adults receiving in-center hemodialysis. Addressing these unmet needs in a geriatric model of care and measuring its effectiveness are areas of future research.

Project description:Background. In Canada, caregivers of older adults receiving home care face difficult decisions that may lead to decision regret. We assessed difficult decisions and decision regret among caregivers of older adults receiving home care services and factors associated with decision regret. Methods. From March 13 to 30, 2020, at the outbreak of the COVID-19 pandemic, we conducted an online survey with caregivers of older adults receiving home care in the 10 Canadian provinces. We distributed a self-administered questionnaire through Canada's largest and most representative private online panel. We identified types of difficult health-related decisions faced in the past year and their frequency and evaluated decision regret using the Decision Regret Scale (DRS), scored from 0 to 100. We performed descriptive statistics as well as bivariable and multivariable linear regression to identify factors predicting decision regret. Results. Among 932 participants, the mean age was 42.2 y (SD = 15.6 y), and 58.4% were male. The most frequently reported difficult decisions were regarding housing and safety (75.1%). The mean DRS score was 28.8/100 (SD = 8.6). Factors associated with less decision regret included higher caregiver age, involvement of other family members in the decision-making process, wanting to receive information about the options, and considering organizations interested in the decision topic and health care professionals as trustworthy sources of information (all P < 0.001). Factors associated with more decision regret included mismatch between the caregiver's preferred option and the decision made, the involvement of spouses in the decision-making process, higher decisional conflict, and higher burden of care (all P < 0.001). Discussion. Decisions about housing and safety were the difficult decisions most frequently encountered by caregivers of older adults in this survey. Our results will inform future decision support interventions.HighlightsThis is one of the first studies to assess decision regret among caregivers of older adults receiving home and community care services and to identify their most frequent difficult decisions.Difficult decisions were most frequently about housing and safety. Most caregivers of older adults in all 10 provinces of Canada experienced decision regret.Factors associated with less decision regret included higher caregiver age, the involvement of other family members in the decision-making process, wanting to receive information about the options, considering organizations interested in the decision topic, and health care professionals as trustworthy sources of information. Factors associated with more decision regret included mismatch between the caregiver's preferred option and the decision made, the involvement of spouses in the decision-making process, higher decisional conflict, and higher burden of care.

Project description:BackgroundDespite health policy that promotes shared decision-making, it is not yet the norm in clinical practice. We aimed to assess how much shared decision-making Canadians experienced in health-related decisions in 2017.MethodsWe conducted a cross-sectional online survey in January 2018 with a Web-based panel of Canadians representing all 10 provinces. We assessed their involvement in health-related decisions made with a health care professional over the previous year by asking about 1) discussion of choice of treatment or care plan, 2) presentation of advantages and disadvantages, 3) exploration of ideas and preferences, 4) discussion of preferred option and 5) match between preferred and actual level of participation. We computed an average shared decision-making score (range 1 [never] to 5 [always]). We presented characteristics of participants and responses using descriptive statistics and explored variations across sociodemographic factors, jurisdictions, geographical areas and care settings (home care or not) using multivariate weighted regressions.ResultsOf the 1591 participants surveyed, 1010 (63.5%) reported receiving health care in the previous 12 months. The mean of the average shared decision-making score was 2.25/5 (standard deviation [SD] 1.16). After weighting, 42.8% of respondents reported that their health care professional often or always mentioned that they had a choice of treatment or care plan, 45.4% reported that advantages and disadvantages were often or always presented, 38.8% reported that they were often or always asked for their ideas or preferences, 40.2% reported that they were often or always asked about their preferred option, and 54.1% stated that their level of participation in decision-making often or always matched their preferred level of participation. Increasing age, rural setting, living in the province of Quebec and not being white significantly decreased the level of shared decision-making experienced. Older respondents (age ≥ 65 yr) receiving home care reported the least shared decision-making (mean score 1.7 [SD 0.5]).InterpretationCanadians in all 10 provinces experienced a low degree of shared decision-making in 2017, with variations across sociodemographic factors, jurisdictions, care settings and geographical areas. Further efforts to foster implementation of shared decision-making are needed and should take these variations into account.

Project description:BackgroundParticipation by all actors involved in health planning is a prerequisite for person-centred care and healthy ageing. Understanding the multiple knowledge needs and the values that shape oral health assessments in home settings is important both to enable participation in oral health planning and to contribute to healthy ageing.ObjectiveThe aim of this study was to investigate decisional needs during oral health assessments in ordinary home settings from the perspectives of older adults, home health care nurses and dental hygienists.MethodsData was collected in ordinary home settings through 24 team-based oral assessments and 39 brief, semi-structured interviews including older adults (n = 24), home health care nurses (n = 8) and dental hygienists (n = 7). Data was analysed using content analysis with a deductive approach. The analysis was guided by the Ottawa Decision Support Guide.ResultsThe analysis revealed that all participants considered participation in decision-making important but until now, older adults might not have participated in making decisions regarding oral health issues. The older adults considered participation important because the decisions had a strong impact on their lives, affecting their health. The professionals considered decision-making important for knowing what step to take next and to be able to follow up and evaluate previous goals and treatments. Organizational and personal barriers for shared decision-making among home health care nurses and dental hygienists were identified. Of the 24 older adults, 20 had different oral health conditions that objectively indicated the need for treatment. An initial important decision concerned whether the older adult wanted to make an appointment for dental care, and if so, how. Another decisional conflict concerned whether and how assisted oral care should be carried out.ConclusionIt is important for key participants in ordinary home settings to participate in interprofessional teams in home health care. To further anchor this in theory, conceptual models for professionals from different care organizations (municipal care, dental care) need to be developed that also involve older adults as participants. Future research could bridge theory and practice by including theories of learning while exploring interorganizational oral health planning in home settings.

Project description:AimTo develop a consensus-based instrument [MELIA] to assess the medication literacy of older home care patients to ultimately optimize medication safety.DesignThis study was part of the project 'Study of Medication Safety in Home Care' (doMESTIC), which took place from 2016 to 2020 in Switzerland. The development process for the medication literacy assessment instrument encompassed six steps.MethodFirst, a scoping literature search was conducted in the Pubmed, CINAHL, EMBASE and Cochrane Library databases as 2) a basis for the development of assessment items. This was followed by 3) a cognitive interview with home care patients and 4) the first round of a Delphi process. Then, 5) a focus group interview with home care experts was conducted before 6) the second Delphi round. The project took place between August 2020 and June 2021. With these different steps, perspectives of both patients and various home care and medication safety experts were included in the development of the assessment instrument.ResultsA detailed instrument consisting of 20 items as well as a 7-item short version were developed. The short version is intended for efficient preliminary screening to identify patients at high risk for medication management-related problems.ConclusionMedication literacy in patients 65 years and older receiving professional home care is a key issue in preventing medication errors. A targeted assessment, starting with an efficient short version of MELIA, allows for prioritization of patients for interventions to optimize medication safety while ensuring their independence as much as possible.ImpactSystematic assessment of patients' medication literacy helps to provide them with targeted and individual support in their medication management to avoid medication errors and increase patient safety. The development of MELIA is a first step in providing an assessment instrument specifically for the home care setting.Patient or public contributionPatient participation was an integral part of the instrument development. The initial 23 items were optimized based on cognitive interviews with four home care patients. The next steps of the instrument development were based on feedback of health care professionals-encompassing advance practice nurses, regular nurses, pharmacists and general practitioners-during a two-step Delphi process as well as a focus group discussion.

Project description:IntroductionPatients with complex care needs (PCCNs) often suffer from combinations of multiple chronic conditions, mental health problems, drug interactions and social vulnerability, which can lead to healthcare services overuse, underuse or misuse. Typically, PCCNs face interactional issues and unmet decisional needs regarding possible options in a cascade of interrelated decisions involving different stakeholders (themselves, their families, their caregivers, their healthcare practitioners). Gaps in knowledge, values clarification and social support in situations where options need to be deliberated hamper effective decision support interventions. This review aims to (1) assess decisional needs of PCCNs from the perspective of stakeholders, (2) build a taxonomy of these decisional needs and (3) prioritise decisional needs with knowledge users (clinicians, patients and managers).Methods and analysisThis review will be based on the interprofessional shared decision making (IP-SDM) model and the Ottawa Decision Support Framework. Applying a participatory research approach, we will identify potentially relevant studies through a comprehensive literature search; select relevant ones using eligibility criteria inspired from our previous scoping review on PCCNs; appraise quality using the Mixed Methods Appraisal Tool; conduct a three-step synthesis (sequential exploratory mixed methods design) to build taxonomy of key decisional needs; and integrate these results with those of a parallel PCCNs' qualitative decisional need assessment (semistructured interviews and focus group with stakeholders).Ethics and disseminationThis systematic review, together with the qualitative study (approved by the Centre Intégré Universitaire de Santé et Service Sociaux du Saguenay-Lac-Saint-Jean ethical committee), will produce a working taxonomy of key decisional needs (ontological contribution), to inform the subsequent user-centred design of a support tool for addressing PCCNs' decisional needs (practical contribution). We will adapt the IP-SDM model, normally dealing with a single decision, for PCCNs who experience cascade of decisions involving different stakeholders (theoretical contribution). Knowledge users will facilitate dissemination of the results in the Canadian primary care network.Prospero registration numberCRD42015020558.

Project description:IntroductionThe 2021 Action Plan for Pain from the Canadian Pain Task Force advocates for patient-centred pain care at all levels of healthcare across provinces. Shared decision-making is the crux of patient-centred care. Implementing the action plan will require innovative shared decision-making interventions, specifically following the disruption of chronic pain care during the COVID-19 pandemic. The first step in this endeavour is to assess current decisional needs (ie, decisions most important to them) of Canadians with chronic pain across their care pathways.Methods and analysisDesignGrounded in patient-oriented research approaches, we will perform an online population-based survey across the ten Canadian provinces. We will report methods and data following the CROSS reporting guidelines.SamplingThe Léger Marketing company will administer the online population-based survey to its representative panel of 500 000 Canadians to recruit 1646 adults (age ≥18 years old) with chronic pain according to the definition by the International Association for the Study of Pain (eg, pain ≥12 weeks). ContentBased on the Ottawa Decision Support Framework, the self-administered survey has been codesigned with patients and contain six core domains: (1) healthcare services, consultation and postpandemic needs, (2) difficult decisions experienced, (3) decisional conflict, (4) decisional regret, (5) decisional needs and (6) sociodemographic characteristics. We will use several strategies such as random sampling to improve survey quality. AnalysisWe will perform descriptive statistical analysis. We will identify factors associated with clinically significant decisional conflict and decision regret using multivariate analyses.Ethics and disseminationEthics was approved by the Research Ethics Board at the Research Centre of the Centre Hospitalier Universitaire de Sherbrooke (project #2022-4645). We will codesign knowledge mobilisation products with research patient partners (eg, graphical summaries and videos). Results will be disseminated via peer-reviewed journals and national and international conferences to inform the development of innovative shared decision-making interventions for Canadians with chronic pain.

Dataset Information

Difficult Decisions for Older Canadians Receiving Home Care, and Why They Are So Difficult: A Web-Based Decisional Needs Assessment.

Highlights

Publications

Difficult Decisions for Older Canadians Receiving Home Care, and Why They Are So Difficult: A Web-Based Decisional Needs Assessment.

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