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1.
SAGE Open Nurs ; 10: 23779608241249335, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38690399

RESUMO

Background: Residents in long-term care homes (LTCHs) are often diagnosed with chronic, life-limiting illnesses, and it is now a common site to provide high levels of care and eventual death. There is an urgent need to address communication gaps and uncertainties surrounding resident's end of life preferences. Nurses are well situated to be key facilitators of necessary advance care planning (ACP), ensuring residents have discussions with family, substitute decision-makers and healthcare providers regarding future health and personal care preferences. However, LTCHs present unique challenges for nurses due to not only complex comorbidities but also staffing dynamics. Purpose: This study explored the experiences and perceptions of Registered Nurses (RNs) and Registered Practical Nurse (RPNs) in LTCHs regarding their role in engaging residents and families in ACP discussions. Methods: Qualitative interpretive descriptive methodology was used. Data were collected from two LTCHs in Southern Ontario with a sample of 15 nurses (7 RNs and 8 RPNs). Analysis involved review of semistructured interviews, field notes, and utilizing constant comparison within an inductive approach. Results: Power and authority dynamics in LTCH's was an overarching theme in the data, with four subthemes: (1) Nurses lacking clarity about ACP, (2) nurses' uncertainty regarding their role in ACP, (3) nurses feeling uncomfortable engaging in ACP discussions, and (4) nurses struggling to support families in ACP discussions. Conclusion: Recommendations for nurses, healthcare providers, LTCH administrators, and policy makers include: (1) development of policies which support, from a systemic level, nurses to feel safe while engaging in ACP; (2) reassessing LTCH's hierarchical structure, and clarifying RN, RPN, and interdisciplinary team members roles in ACP; (3) developing culture change that allows a team and person-centered approach to ACP; and (4) providing ongoing education and mentorship for nurses to manage family dynamics and expand their understanding of ACP beyond a biomedical lens.

2.
Musculoskeletal Care ; 22(2): e1881, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38588022

RESUMO

INTRODUCTION: Osteoarthritis (OA) is one of the most prevalent chronic conditions in Canada. Despite the established benefits of non-pharmacological management (education, exercise) for people with OA, many do not receive treatment, resulting in pain, decreased physical function, and poorer quality of life. Virtual programme options grew significantly during the recent pandemic and may provide longer-term opportunities for increased uptake by reaching individuals otherwise unable to participate. This study explored the experiences and perspectives of clients participating in and clinicians providing the Good Life with osteoArthritis: Denmark (GLA:DTM) Canada remote programme. METHODS: This qualitative descriptive study recruited 10 clients with hip and/or knee OA and 11 clinicians across Canada using purposive sampling. An online pre-interview survey was completed, and individual interviews were conducted, audio-recorded, transcribed verbatim and analysed independently by two researchers using inductive thematic analysis. Coding and analyses were initially conducted separately by group and then compared and combined. RESULTS: Four overarching themes (and 11 subthemes) were identified: (1) Expected and unexpected benefits of virtual programs; (2) Drawbacks to virtual programs; (3) Programme delivery in a virtual world; (4) Shifting and non-shifting perspectives. Although initially sceptical, after completion of the programme, clients were in favour of virtual delivery with many benefits described. Clinicians' perspectives varied about feedback aimed to correct client movement patterns. CONCLUSIONS: Clients and clinicians identified important experiential and procedural elements for virtual chronic disease management programs that include education and exercise. Additional work is needed to understand if the GLA:DTM remote outcomes are equivalent to the in-person programme.


Assuntos
Osteoartrite do Quadril , Osteoartrite do Joelho , Humanos , Terapia por Exercício/métodos , Osteoartrite do Joelho/terapia , Qualidade de Vida , Osteoartrite do Quadril/terapia , Gerenciamento Clínico
3.
EClinicalMedicine ; 70: 102479, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38685924

RESUMO

Background: Artificial intelligence (AI) has repeatedly been shown to encode historical inequities in healthcare. We aimed to develop a framework to quantitatively assess the performance equity of health AI technologies and to illustrate its utility via a case study. Methods: Here, we propose a methodology to assess whether health AI technologies prioritise performance for patient populations experiencing worse outcomes, that is complementary to existing fairness metrics. We developed the Health Equity Assessment of machine Learning performance (HEAL) framework designed to quantitatively assess the performance equity of health AI technologies via a four-step interdisciplinary process to understand and quantify domain-specific criteria, and the resulting HEAL metric. As an illustrative case study (analysis conducted between October 2022 and January 2023), we applied the HEAL framework to a dermatology AI model. A set of 5420 teledermatology cases (store-and-forward cases from patients of 20 years or older, submitted from primary care providers in the USA and skin cancer clinics in Australia), enriched for diversity in age, sex and race/ethnicity, was used to retrospectively evaluate the AI model's HEAL metric, defined as the likelihood that the AI model performs better for subpopulations with worse average health outcomes as compared to others. The likelihood that AI performance was anticorrelated to pre-existing health outcomes was estimated using bootstrap methods as the probability that the negated Spearman's rank correlation coefficient (i.e., "R") was greater than zero. Positive values of R suggest that subpopulations with poorer health outcomes have better AI model performance. Thus, the HEAL metric, defined as p (R >0), measures how likely the AI technology is to prioritise performance for subpopulations with worse average health outcomes as compared to others (presented as a percentage below). Health outcomes were quantified as disability-adjusted life years (DALYs) when grouping by sex and age, and years of life lost (YLLs) when grouping by race/ethnicity. AI performance was measured as top-3 agreement with the reference diagnosis from a panel of 3 dermatologists per case. Findings: Across all dermatologic conditions, the HEAL metric was 80.5% for prioritizing AI performance of racial/ethnic subpopulations based on YLLs, and 92.1% and 0.0% respectively for prioritizing AI performance of sex and age subpopulations based on DALYs. Certain dermatologic conditions were significantly associated with greater AI model performance compared to a reference category of less common conditions. For skin cancer conditions, the HEAL metric was 73.8% for prioritizing AI performance of age subpopulations based on DALYs. Interpretation: Analysis using the proposed HEAL framework showed that the dermatology AI model prioritised performance for race/ethnicity, sex (all conditions) and age (cancer conditions) subpopulations with respect to pre-existing health disparities. More work is needed to investigate ways of promoting equitable AI performance across age for non-cancer conditions and to better understand how AI models can contribute towards improving equity in health outcomes. Funding: Google LLC.

4.
BMC Nurs ; 23(1): 1, 2024 Jan 02.
Artigo em Inglês | MEDLINE | ID: mdl-38163872

RESUMO

INTRODUCTION: Maternal glycemia is associated with pregnancy outcomes. Thus, supporting the self-management experiences and preferences of pregnant women with type 1 and type 2 diabetes is crucial to optimize glucose control and perinatal outcomes. RESEARCH DESIGN AND METHODS: This paper describes the mixed methods integration of a sequential comparative case study. The objectives are threefold, as we integrated the quantitative and qualitative data within the overall mixed methods design: (1) to determine the predictors of glycemic control during pregnancy; (2) to understand the experience and diabetes self-management support needs during pregnancy among women with pre-existing diabetes; (3) to assess how self-management and support experiences helpe to explain glycemic control among women with pre-existing diabetes in pregnancy. The purpose of the mixing was to integrate the quantitative and qualitative data to develop rich descriptive cases of how diabetes self-management and support experiences and preferences in women with type 1 and type 2 diabetes during pregnancy help explain glucose control. A narrative approach was used to weave together the statistics and themes and the quantitative results were integrated visually alongside the qualitative themes to display the data integration. RESULTS: The quantitative results found that women achieved "at target" glucose control (mean A1C of the cohort by the third visit: 6.36% [95% Confidence Interval 6.11%, 6.60%]). The qualitative findings revealed that feelings of fear resulted in an isolating and mentally exhausting pregnancy. The quantitative data also indicated that women reported high levels of self-efficacy that increased throughout pregnancy. Qualitative data revealed that women who had worked hard to optimize glycemia during pregnancy were confident in their self-management. However, they lacked support from their healthcare team, particularly around self-management of diabetes during labour and delivery. CONCLUSIONS: The achievement of optimal glycemia during pregnancy was motivated by fear of pregnancy complications and came at a cost to women's mental health. Mental health support, allowing women autonomy, and the provision of peer support may improve the experience of diabetes self-management during pregnancy. Future work should focus on developing, evaluating and implementing interventions that support these preferences.

5.
Nat Med ; 29(7): 1814-1820, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37460754

RESUMO

Predictive artificial intelligence (AI) systems based on deep learning have been shown to achieve expert-level identification of diseases in multiple medical imaging settings, but can make errors in cases accurately diagnosed by clinicians and vice versa. We developed Complementarity-Driven Deferral to Clinical Workflow (CoDoC), a system that can learn to decide between the opinion of a predictive AI model and a clinical workflow. CoDoC enhances accuracy relative to clinician-only or AI-only baselines in clinical workflows that screen for breast cancer or tuberculosis (TB). For breast cancer screening, compared to double reading with arbitration in a screening program in the UK, CoDoC reduced false positives by 25% at the same false-negative rate, while achieving a 66% reduction in clinician workload. For TB triaging, compared to standalone AI and clinical workflows, CoDoC achieved a 5-15% reduction in false positives at the same false-negative rate for three of five commercially available predictive AI systems. To facilitate the deployment of CoDoC in novel futuristic clinical settings, we present results showing that CoDoC's performance gains are sustained across several axes of variation (imaging modality, clinical setting and predictive AI system) and discuss the limitations of our evaluation and where further validation would be needed. We provide an open-source implementation to encourage further research and application.


Assuntos
Inteligência Artificial , Triagem , Reprodutibilidade dos Testes , Fluxo de Trabalho , Humanos
6.
J Empir Res Hum Res Ethics ; 18(4): 296-303, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37309124

RESUMO

Research on deceased organ donors has been hindered by concerns related to seeking research consent from transplant recipients. We undertook this qualitative study to elucidate solid organ transplant recipients views on organ donor research, their role in the consent for such research, and their preferences related to providing their data. We conducted interviews with 18 participants and three themes emerged from the data. The first centered around participant research literacy. The second described practical preferences of participating in research, and the third related to the connection between donor and recipient. We concluded that previously held views about the requirement for transplant recipients to have a consenting role in donor research is not always suitable.


Assuntos
Obtenção de Tecidos e Órgãos , Transplantados , Humanos , Doadores de Tecidos , Pesquisa Qualitativa , Alfabetização , Consentimento Livre e Esclarecido
7.
Nat Biomed Eng ; 7(6): 756-779, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-37291435

RESUMO

Machine-learning models for medical tasks can match or surpass the performance of clinical experts. However, in settings differing from those of the training dataset, the performance of a model can deteriorate substantially. Here we report a representation-learning strategy for machine-learning models applied to medical-imaging tasks that mitigates such 'out of distribution' performance problem and that improves model robustness and training efficiency. The strategy, which we named REMEDIS (for 'Robust and Efficient Medical Imaging with Self-supervision'), combines large-scale supervised transfer learning on natural images and intermediate contrastive self-supervised learning on medical images and requires minimal task-specific customization. We show the utility of REMEDIS in a range of diagnostic-imaging tasks covering six imaging domains and 15 test datasets, and by simulating three realistic out-of-distribution scenarios. REMEDIS improved in-distribution diagnostic accuracies up to 11.5% with respect to strong supervised baseline models, and in out-of-distribution settings required only 1-33% of the data for retraining to match the performance of supervised models retrained using all available data. REMEDIS may accelerate the development lifecycle of machine-learning models for medical imaging.


Assuntos
Aprendizado de Máquina , Aprendizado de Máquina Supervisionado , Diagnóstico por Imagem
8.
BMC Pregnancy Childbirth ; 23(1): 309, 2023 May 02.
Artigo em Inglês | MEDLINE | ID: mdl-37131168

RESUMO

BACKGROUND: With the increasing prevalence of pre-existing type 1 and type 2 diabetes in pregnancy and their associated perinatal risks, there is a need to focus on interventions to achieve optimal maternal glycemia to improve pregnancy outcomes. One strategy focuses on improving diabetes self-management education and support for expectant mothers with diabetes. This study's objective is to describe the experience of managing diabetes during pregnancy and identify the diabetes self-management education and support needs during pregnancy among women with type 1 and type 2 diabetes. METHODS: Using a qualitative descriptive study design, we conducted semi-structured interviews with 12 women with pre-existing type 1 or 2 diabetes in pregnancy (type 1 diabetes, n = 6; type 2 diabetes, n = 6). We employed conventional content analyses to derive codes and categories directly from the data. RESULTS: Four themes were identified that related to the experiences of managing pre-existing diabetes in pregnancy; four others were related to the self-management support needs in this population. Women with diabetes described their experiences of pregnancy as terrifying, isolating, mentally exhausting and accompanied by a loss of control. Self-management support needs reported included healthcare that is individualized, inclusive of mental health support and support from peers and the healthcare team. CONCLUSIONS: Women with diabetes in pregnancy experience feelings of fear, isolation and a loss of control, which may be improved through personalized management protocols that avoid "painting everybody with the same brush" as well as peer support. Further examination of these simple interventions may yield important impacts on women's experience and sense of connection.


Assuntos
Diabetes Mellitus Tipo 1 , Diabetes Mellitus Tipo 2 , Autogestão , Gravidez , Feminino , Humanos , Diabetes Mellitus Tipo 2/terapia , Pesquisa Qualitativa , Resultado da Gravidez
9.
Diabetes Spectr ; 36(2): 182-192, 2023 May.
Artigo em Inglês | MEDLINE | ID: mdl-37193202

RESUMO

Background: Because much of diabetes management during pregnancy occurs at home, self-management factors such as self-efficacy, self-care activities, and care satisfaction may affect glycemia. Our objective was to explore trends in glycemic control during pregnancy in women with type 1 or type 2 diabetes; assess self-efficacy, self-care, and care satisfaction; and examine these factors as predictors of glycemic control. Methods: We conducted a cohort study from April 2014 to November 2019 at a tertiary center in Ontario, Canada. Self-efficacy, self-care, care satisfaction, and A1C were measured three times during pregnancy (T1, T2, and T3). Linear mixed-effects modeling explored trends in A1C and examined self-efficacy, self-care, and care satisfaction as predictors of A1C. Results: We recruited 111 women (55 with type 1 diabetes and 56 with type 2 diabetes). Mean A1C significantly decreased by 1.09% (95% CI -1.38 to -0.79) from T1 to T2 and by 1.14% (95% CI -1.43 to -0.86) from T1 to T3. Self-efficacy significantly predicted glycemic control for women with type 2 diabetes and was associated with a mean change in A1C of -0.22% (95% CI -0.42 to -0.02) per unit increase in scale. The exercise subscore of self-care significantly predicted glycemic control for women with type 1 diabetes and was associated with a mean change in A1C of -0.11% (95% CI -0.22 to -0.01) per unit increase in scale. Conclusion: Self-efficacy significantly predicted A1C during pregnancy in a cohort of women with preexisting diabetes in Ontario, Canada. Future research will continue to explore the self-management needs and challenges in women with preexisting diabetes in pregnancy.

10.
Int J Telerehabil ; 15(2): e6583, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38162933

RESUMO

Introduction: Chronic disease management programs (CDMP) that include education and exercise enhance outcomes and reduce healthcare costs. Remote CDMP have the potential to provide convenient, cost-effective, and accessible options for individuals, but it is unclear how to best implement programs that include education and exercise. This review identified and synthesized resources for implementing remote CDMP programs that incorporate education and exercise. Methods: Peer-reviewed and grey literature were systematically searched from January 1998 to May 2022. Covidence software was used for screening and extraction. The data were synthesized and presented in a narrative and tabular format. Results: Six peer-reviewed manuscripts and six grey literature documents published between 2006-2022 were included. All resources described individual programs targeting various chronic conditions. Provider training, consent, participant screening, and safety considerations were identified. Conclusions: Guidelines for remote CFMP programs are lacking. Additional work is needed to design remote CDMP guidelines incorporating education and exercise.

11.
J Nurs Educ ; 61(12): 679-692, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36475991

RESUMO

BACKGROUND: Advancing inclusivity in graduate nursing education is paramount for preparing diverse nursing leaders to mobilize change within health care and educational systems. This scoping review examined inclusivity in graduate nursing education. METHOD: CINAHL, Medline, and ERIC databases were searched for studies published in English since 2011. Key journals and reference lists of included studies were hand searched. Included studies focused on inclusivity in the context of graduate nursing education. RESULTS: Data from 31 included studies are presented. Most of the studies (n = 22) aimed to cultivate inclusivity among students, primarily through cultural competence training. A few studies enacted inclusivity through program-level strategies (n = 4) or explored the lived experiences of diverse students (n = 5). CONCLUSION: Future research and education initiatives should advance a more holistic, intersectional approach to cultivating inclusivity, as well as emphasize enacting inclusivity through strategies to transform the learning environment. [J Nurs Educ. 2022;61(12):679-692.].


Assuntos
Educação de Pós-Graduação em Enfermagem , Humanos , Competência Cultural
12.
BMJ Open ; 12(10): e062777, 2022 10 17.
Artigo em Inglês | MEDLINE | ID: mdl-36253034

RESUMO

INTRODUCTION: For women with pre-existing type 1 and type 2 diabetes, glycaemic targets are narrow during the preconception and prenatal periods to optimise pregnancy outcomes. Women aim to achieve glycaemic targets during pregnancy through the daily tasks of diabetes self-management. Diabetes self-management during pregnancy involves frequent self-monitoring of blood glucose and titration of insulin based on glucose measures and carbohydrate intake. Our objective is to explore how self-management and support experiences help explain glycaemic control among women with pre-existing diabetes in pregnancy. METHODS AND ANALYSIS: We will conduct a four-phased mixed-methods sequential comparative case study. Phase I will analyse the data from a prospective cohort study to determine the predictors of glycaemic control during pregnancy related to diabetes self-management among women with pre-existing diabetes. In phase II, we will use the results of the cohort analysis to develop data collection tools for phase III. Phase III will be a qualitative description study to understand women's diabetes education and support needs during pregnancy. In phase IV, we will integrate the results of phases I and III to generate unique cases representing the ways in which self-management and support experiences explain glycaemic control in pregnancy. ETHICS AND DISSEMINATION: The phase I cohort study received approval from our local ethics review board, the Hamilton Integrated Ethics Review Board. We will seek ethics approval for the phase III qualitative study prior to its commencement. Participants will provide informed consent before study enrolment. We plan to publish our results in peer-reviewed journals and present our findings to stakeholders at relevant conferences/symposia.


Assuntos
Diabetes Mellitus Tipo 2 , Autogestão , Glicemia , Estudos de Coortes , Diabetes Mellitus Tipo 2/terapia , Feminino , Humanos , Insulina , Gravidez , Estudos Prospectivos
13.
Pain Med ; 23(11): 1828-1836, 2022 10 29.
Artigo em Inglês | MEDLINE | ID: mdl-35652734

RESUMO

OBJECTIVE: Although there is growing interest in medically authorized cannabis for chronic pain, little is known about patients' perspectives. We explored perceptions of people living with chronic pain regarding benefits and concerns surrounding their use of cannabis for therapeutic purposes. SETTING: A hospital-based clinic in Hamilton and two community-based interdisciplinary pain clinics in Burlington, Ontario, Canada. METHODS: In this qualitative descriptive study, we conducted semi-structured interviews with 13 people living with chronic pain who used cannabis therapeutically, living in Ontario, Canada. We used thematic analysis, with data collection, coding, and analysis occurring concurrently. RESULTS: People living with chronic pain reported important benefits associated with use of cannabis for therapeutic purposes, including reduced pain, improved functionality, and less risk of harms compared to prescription opioids. Most patients also acknowledged harms, such as grogginess and coughing, and there was considerable variability in patient experiences. Financial costs and stigma were identified as important barriers to use of cannabis. CONCLUSION: Evidence-based guidance that incorporates patients' values and preferences may be helpful to inform the role of cannabis in the management of chronic pain.


Assuntos
Cannabis , Dor Crônica , Humanos , Dor Crônica/tratamento farmacológico , Analgésicos Opioides/uso terapêutico , Analgésicos/uso terapêutico , Pesquisa Qualitativa , Ontário
14.
Can J Aging ; 41(3): 443-450, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35431012

RESUMO

This interpretative, qualitative study explored residents' and families' perspectives on advance care planning (ACP) in long-term care (LTC). Perspectives on when, how, and with whom ACP discussions should be introduced and barriers and solutions to improving ACP engagement were examined. Fifty-one residents and families participated in seven focus groups. The findings revealed that residents and families prioritized caring connections over professional rank when reflecting on staff involvement in ACP. The findings further revealed that the caring and compassionate environment considered to be a critical pre-condition for ACP engagement was more typically enacted at end of life when ACP was no longer an option. Our findings suggest that work practices and organizational structures within LTC play an important role in inhibiting ACP engagement.


Assuntos
Planejamento Antecipado de Cuidados , Assistência Terminal , Grupos Focais , Humanos , Assistência de Longa Duração , Pesquisa Qualitativa
15.
BMC Health Serv Res ; 22(1): 433, 2022 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-35365130

RESUMO

BACKGROUND: Evidence has shown that family and friend caregivers of stroke survivors are significantly and negatively impacted by caregiving. The negative effects of caregiving may persist over time suggesting that caregivers might benefit from ongoing engagement with supportive services. However, little is known about caregivers' use of formally funded health and social services, or the factors influencing their access to and use of these services. The aim of this study is to increase understanding of the factors that influence stroke caregivers' access and use of formal health and social services, from the perspective of stroke caregivers and healthcare providers. METHODS: A qualitative study was conducted with stroke caregivers and health providers in Ontario, Canada using interpretive description. In-depth interviews were conducted with caregivers of survivors who experienced a stroke between six months to five years previous and healthcare providers who support caregivers and stroke survivors. All participants provided written informed consent. Interview data were analyzed using constant comparison to identify codes and develop key thematic constructs. RESULTS: A total of 40 interviews were conducted with 22 stroke caregivers at an average 30-months post-stroke and 18 health providers. Factors that influenced stroke caregivers' access and use of services included: finances and transportation; challenges caregivers faced in caring for their health; trust that they could leave their family member and trust in health providers; limited information pertaining to services and a lack of suitable services; and the response of their social networks to their caregiving situation. CONCLUSION: Stroke caregivers experience significant challenges in accessing and using formal health and social services. These challenges could be addressed by increasing availability of subsidized community-based supports such as respite and counselling tailored to meet the ongoing needs of caregivers. Systemic change is needed by the health system that readily includes and supports caregivers throughout the stroke recovery continuum, particularly in the community setting.


Assuntos
Cuidadores , Acidente Vascular Cerebral , Humanos , Ontário , Serviço Social , Acidente Vascular Cerebral/terapia , Sobreviventes
17.
Artigo em Inglês | MEDLINE | ID: mdl-35147072

RESUMO

Objective: The aim of this study was to refine the items of a preference-based amyotrophic lateral sclerosis health-related quality of life scale (PB-ALS HRQL scale) based on domains generated in a previous study. Methods: Survey methodology was used to assess item importance rating (IR) and independence. Median importance was calculated for each item and a rating of "very important" was required for the item to remain. Correlations were used to examine item independence. Highly correlated items (rs > 0.7) were considered for removal. Cognitive debriefing (CD) interviews, conducted by Zoom, telephone, or email based on participant preference and communication needs, were used to identify potential issues. Participants provided feedback about wording, clarity, response options, and recall period on randomly selected items. Items were considered finalized when three sequential CD participants approved the item with no revisions. Results: Thirty-four people with ALS (PALS, n = 16 females; age range 44-78 years; ALS Functional Rating Scale-Revised [ALSFRS-R] range 0-48) in Canada completed the survey; a subset of 18 PALS completed CD interviews (n = 8 female; age range 44-71 years; ALSFRS-R range 0-48). Four items were highly correlated with one or more items, were not rated as very important, or were not approved via CD and were removed. Conclusions: The final four-response option PB-ALS Scale includes eight items: recreation and leisure, mobility, interpersonal interactions and relationships, eating and swallowing, handling objects, communicating, routine activities, and mood. The next step is to translate the PB-ALS Scale into French and develop a scoring algorithm based on PALS' preferences.


Assuntos
Esclerose Lateral Amiotrófica , Humanos , Feminino , Adulto , Pessoa de Meia-Idade , Idoso , Esclerose Lateral Amiotrófica/psicologia , Qualidade de Vida , Inquéritos e Questionários , Deglutição/fisiologia , Idioma
18.
Can J Nurs Res ; 54(2): 211-233, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-35130749

RESUMO

Stroke can be a life altering event that necessitates considerable amounts of formal and informal care. The impacts of stroke often persist over time requiring ongoing support for stroke survivors. Family members provide the majority of care and experience many life changes as a result of their caregiving role including social, financial, employment and health impacts. Formal supports such as counselling, respite, and health promotion initiatives that directly benefit caregivers or benefit them indirectly through supporting the stroke survivor, are well-placed to help caregivers manage their caregiving role. However, to date little is known about formal service use by stroke caregivers and the factors that influence their service use. This scoping review provides a critique and synthesis of what is known about stroke caregivers' access and use of formal services intended to support them. Findings suggest that while services are available, caregivers' ability to use them are impacted by both facilitators and barriers. Facilitators included: sex, age, and having a higher household income (depending on services used). Barriers included: high cost, poor service quality and deficient knowledge/communication regarding service availability. This review highlights a significant gap in our knowledge of caregivers' experience in accessing and using formal services.


Assuntos
Cuidadores , Acidente Vascular Cerebral , Família , Humanos , Apoio Social , Serviço Social , Sobreviventes
19.
J Pediatr Nurs ; 62: 144-154, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34404554

RESUMO

BACKGROUND: Technological advances have led to more youth with medical complexity (YMC) who are living into adulthood and being transferred from pediatric to adult care. The transition to adult care is a complex and challenging process, partly due to differences in how pediatric and adult systems deliver health care. YMC and their families need support from their health care providers to ease this transition. To identify how to better support transitioning YMC, a needs assessment was conducted to examine the current state of transitional support for youth and families cared for by a pediatric Complex Care Program. AIMS: The aims of this needs assessment were to understand the transition practices of pediatric Complex Care Programs, explore transition-related needs of YMC and their families, and identify priorities for future quality improvement. METHODS: This project involved three components: a literature review, a benchmarking survey of pediatric Complex Care Programs in Ontario, and key informant interviews. FINDINGS: The benchmarking survey identified transition planning and transfer of care as areas of strength in the Complex Care Program, while transition readiness and transfer completion provided opportunities for improvement. Stakeholder collaboration, an early start, and knowledgeable providers facilitated a successful transition. Barriers included lack of time, poor access to adult services and resources, higher medical complexity, and inadequate support for adult health care providers. CONCLUSIONS: Recommendations for improving transitional care for YMC are provided, along with resources, tools, and considerations for implementation.


Assuntos
Transição para Assistência do Adulto , Cuidado Transicional , Adolescente , Prioridades em Saúde , Humanos , Avaliação das Necessidades , Melhoria de Qualidade
20.
Nurs Sci Q ; 34(3): 301-308, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-34212802

RESUMO

As youth with medical complexity transition to adult services, their extensive support networks are disrupted, leaving them vulnerable to care gaps. Within the setting of a pediatric complex care clinic in Ontario, Canada, the authors conducted a needs assessment guided by transitions theory to better understand the movement to adult services for youth and their families. The authors here describe the application of transitions theory and critique the theory's usefulness for understanding the transition to adult services for youth and their families.


Assuntos
Transição para Assistência do Adulto , Adolescente , Adulto , Criança , Humanos
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