Care For People Research Articles

Residency Diary: Caring for Other People's Children.

Residency Diary: Caring for Other People's Children.

Lessons learnt (so far) from establishing models of integrated clinical care for children and young people

Lessons learnt (so far) from establishing models of integrated clinical care for children and young people

Indigenous access to clinical services along the lung cancer treatment pathway: a review of current evidence.

Lung cancer is a deadly cancer. Early diagnosis and access to timely treatment are essential to maximizing the likelihood of survival. Indigenous peoples experience enduring disparities in lung cancer survival, and disparities in access to and through lung cancer services is one of the important drivers of these disparities. In this manuscript, we aimed to examine the current evidence on disparities in Indigenous access to services along the lung cancer treatment pathway. A narrative literature review was conducted for all manuscripts and reports published up until July 20, 2022, using Medline, Scopus, Embase, and Web of Science. Following the identification of eligible literature, full-text versions were scanned for relevance for inclusion in this review, and relevant information was extracted. After scanning 1,459 documents for inclusion, our final review included 36 manuscripts and reports that included information on lung cancer service access for Indigenous peoples relative to non-Indigenous peoples. These documents included data from Aotearoa New Zealand, Australia, Canada, and the USA (including Hawai'i). Our review found evidence of disparities in access to, and the journey through, lung cancer care for Indigenous peoples. Disparities were most obvious in access to early detection and surgery, with inconsistent evidence regarding other components of the pathway. These observations are made amid relatively scant data in a global sense, highlighting the need for improved data collection and monitoring of cancer care and outcomes for Indigenous peoples worldwide. Access to early detection and guideline-concordant treatment are essential to addressing enduring disparities in cancer survival experienced by Indigenous peoples globally.

Barriers and facilitators to accessing oral healthcare for older people in the UK: a scoping review.

Introduction Access to dental services is a growing problem for older people in the UK. The aim of this scoping review is to identify the barriers and facilitators influencing older people's ability to access oral healthcare in the UK based on the existing literature.Methods The scoping review followed the framework proposed by Levac and colleagues (2010). Peer-reviewed literature was retrieved in April 2023 from Web of Science, Medline, PsycInfo and CINAHL for the period 1973-2023. After screening, data were extracted to identify barriers and facilitators mapped to individual, organisational and policy-level factors. The themes generated were used to identify gaps in the literature and policy recommendations.Results Overall, 27 studies fulfilled the inclusion criteria. Most studies published were from England; there was a large representation of opinion pieces. The main barriers and facilitators related to cost of services, perceptions of dentistry, availability of services and both the dental and social care workforce.Conclusion Multiple barriers exist surrounding access to dental care for older people. Various facilitators exist but not all are successful. More research needs to be carried out on older people's access to dental services in the community, particularly for the 'oldest old' and minority groups.

Improving dementia and palliative care through the co-design of an integrated model of care.

A need exists to improve end-of-life care for people with advanced dementia, by integrating available services. Stakeholders on the Central Coast of New South Wales united to co-design an improved model of care that would integrate care across care settings. The aim of this project was to co-design a model of integrated, person-centred palliative care for people with dementia at the end of life. This case study describes seven co-design workshops which took place in 2023 to develop a program logic model. Workshops were run in a hybrid format, with stakeholders attending in person and online. Workshops were attended by an average of 26 stakeholders including people and carers with lived experience of dementia, healthcare workers from hospital and community-based services (public and private), primary care clinicians, and participants from the not-for-profit sector and academia. Stakeholders developed a shared mission and purpose and identified priority areas for improving palliative care for people with advanced dementia. This led to the development of a program logic model, which included components relating to education for people with dementia, carers, and professionals, care coordination and referrals, and regular multidisciplinary case conferences. Feedback on the model from a new audience identified areas for improvement. The stakeholder group participated in a survey to evaluate the effectiveness of the co-design. The survey found that stakeholders were satisfied with the model of care the group developed. This project highlighted the value of adopting a co-design approach with stakeholders to develop a new model of care.

Evaluation of a specialist nurse-led structured self-management training for peer supporters with type 2 diabetes mellitus with or without comorbid hypertension in Slovenia

BackgroundThe training of peer supporters is critical because the success of the entire peer support intervention depends on the knowledge and experience that peer supporters can share with other patients. The objective of this study was to evaluate the pilot implementation of a specialist nurse-led self-management training programme for peer supporters with type 2 diabetes mellitus (T2DM) with or without comorbid hypertension (HTN) at the primary healthcare level in Slovenia, in terms of feasibility, acceptability, and effectiveness.MethodsA prospective pre-post interventional pilot study was conducted in two Community Health Centres (CHC) in Slovenia from May 2021 to August 2022. Purposive sampling was employed to recruit approximately 40 eligible volunteers to become trained peer supporters. A specialist nurse-led structured training lasting 15 h over a 2-month period was delivered, comprising four group and two individual sessions. The comprehensive curriculum was based on interactive verbal and visual learning experience, utilising the Diabetes Conversation Maps™. Data were collected from medical records, by clinical measurements, and using questionnaires on sociodemographic and clinical data, the Theoretical Framework of Acceptability, knowledge of T2DM and HTN, and the Appraisal of Diabetes Scale, and evaluation forms.ResultsOf the 36 participants, 31 became trained peer supporters (retention rate of 86.1%). Among them, 21 (67.7%) were women, with a mean age of 63.9 years (SD 8.9). The training was evaluated as satisfactory and highly acceptable. There was a significant improvement in knowledge of T2DM (p < 0.001) and HTN (p = 0.024) among peer supporters compared to baseline. Six months post-training, there was no significant improvement in the quality of life (p = 0.066), but there was a significant decrease in body mass index (BMI) (p = 0.020) from 30.4 (SD 6.2) at baseline to 29.8 (SD 6.2).ConclusionThe pilot implementation of a specialist nurse-led self-management training for peer supporters was found to be feasible, acceptable, and effective (in the study group). It led to improvements in knowledge, maintained disease control, and promoted positive self-management behaviours among peer supporters, as evidenced by a decrease in their BMI over six months. The study emphasises the need for effective recruitment, training, and retention strategies.Trial registrationThe research is part of the international research project SCUBY: Scale up diabetes and hypertension care for vulnerable people in Cambodia, Slovenia and Belgium, which is registered in ISRCTN registry (https://www.isrctn.com/ISRCTN41932064).

Functional neurological disorder in Europe: regional differences in education and health policy.

Functional neurological disorder (FND) is a common cause of neurological disability. Despite recent advances in pathophysiological understanding and treatments, application of this knowledge to clinical practice is variable and limited. Our aim was to provide an expert overview of the state of affairs of FND practice across Europe, focusing on education and training, access to specialized care, reimbursement and disability policies, and academic and patient-led representation of people with FND. We conducted a survey across Europe, featuring one expert per country. We asked experts to compare training and services for people with FND to those provided to people with multiple sclerosis (MS). Responses from 25 countries revealed that only five included FND as a mandatory part of neurological training, while teaching about MS was uniformly included. FND was part of final neurology examinations in 3/17 countries, unlike MS that was included in all 17. Seventeen countries reported neurologists with an interest in FND but the estimated mean ratio of FND-interested neurologists to MS neurologists was 1:20. FND coding varied, with psychiatric coding for FND impacting treatment access and disability benefits in the majority of countries. Twenty countries reported services refusing to see FND patients. Eight countries reported an FND special interest group or network; 11 reported patient-led organizations. FND is largely a marginal topic within European neurology training and there is limited access to specialized care and disability benefits for people with FND across Europe. We discuss how this issue can be addressed at an academic, healthcare and patient organization level.

Strategies to Increase the Use of Connected Insulin Pens Through Shared Decision-Making: A Quality Improvement Success Story.

Quality Improvement Success Stories are published by the American Diabetes Association in collaboration with the American College of Physicians and the National Diabetes Education Program. This series is intended to highlight best practices and strategies from programs and clinics that have successfully improved the quality of care for people with diabetes or related conditions. Each article in the series is reviewed and follows a standard format developed by the editors of Clinical Diabetes. The following article is part of a special article collection from the T1D Exchange Quality Improvement Collaborative. It describes an initiative to reduce inequities in diabetes technology access and use and increase the use of connected insulin pens at an academic endocrinology practice in Chicago, IL.

Partnering With Families Through Shared Decision-Making to Increase Connected Pen Use: A Quality Improvement Success Story.

Quality Improvement Success Stories are published by the American Diabetes Association in collaboration with the American College of Physicians and the National Diabetes Education Program. This series is intended to highlight best practices and strategies from programs and clinics that have successfully improved the quality of care for people with diabetes or related conditions. Each article in the series is reviewed and follows a standard format developed by the editors of Clinical Diabetes. The following article is part of a special article collection from the T1D Exchange Quality Improvement Collaborative. It describes efforts at an academic pediatric diabetes clinic in Memphis, TN, to increase both the use of connected insulin pens (CIPs) and shared decision-making around diabetes technology aided by patient information and self-reflection handouts.

Direct healthcare costs for people with cerebral palsy in the Brazilian unified health system between 2015 and 2019

ABSTRACT Background Estimate the costs of inpatient and outpatient care for people with Cerebral Palsy (CP) in Brazil. Research design and methods Health records of people with CP in the Hospital and Outpatient Information Systems of Brazil between 2015 and 2019 were analyzed. Variables analyzed were gender, age, ICD, Intensive Care Unit (ICU) use, total cost, and ICU cost. Costs were adjusted for inflation and converted to dollars. Linear regression analysis was performed to investigate the association between social and clinical variables and direct costs. Results A total direct cost of approximately $166 million to the National Health System was identified, with $7.08 million/year and $26.1 million/year of inpatient and outpatient costs, respectively. The healthcare was primarily for children up to 14 years of age. The ICD ‘spastic quadriplegic CP’ received the most attendance. Rehabilitation was responsible for 75% of the outpatient care, with physiotherapy standing out. Increased age, use of ICU, and the types of CP are related to increased cost. Conclusions Healthcare for people with CP produced expressive costs for the Brazilian public health system, mainly with outpatient procedures and rehabilitation, with children being the most attended. Estimating these costs assist in better resource allocation for more effective healthcare provision.

Increasing Awareness and Uptake of Connected Insulin Pens for Eligible Patients With Diabetes: A Quality Improvement Success Story.

Quality Improvement Success Stories are published by the American Diabetes Association in collaboration with the American College of Physicians and the National Diabetes Education Program. This series is intended to highlight best practices and strategies from programs and clinics that have successfully improved the quality of care for people with diabetes or related conditions. Each article in the series is reviewed and follows a standard format developed by the editors of Clinical Diabetes. The following article is part of a special article collection from the T1D Exchange Quality Improvement Collaborative. It describes an initiative to increase the use of connected insulin pens in two primary care clinics and one endocrinology clinic serving diverse populations within the Stanford Health Care system in the San Francisco Bay area of California.

Understandings and Perceived Benefits of Outdoor-Based Support for People Living with Dementia.

The importance of the outdoors for supporting well-being is recognized, but less is known about the role of the outdoors in supporting people living with dementia. The aim of this study was to examine three stakeholder groups' understandings about outdoor-based support and care for people living with dementia to help understand what might be done to maximize the outdoors as a source of support for people living with dementia. Data were collected in Southern Ontario, Canada, between January and June 2023 via 1-1 interviews (n = 12); four focus groups (n = 17) with staff from organizations providing outdoor recreation or social programming; six in-person focus groups (n = 37); and 2 outdoor-based walking focus groups (n = 17) conducted with people living with dementia, care partners, and older adults. All interviews and focus groups, other than the walking focus groups where the field notes were used, were audio recorded and fully transcribed verbatim. Within and across data sets, thematic analysis was conducted. We report findings relating to the challenges of achieving full participation in outdoor-based activities; perceived physical, social, and mental health benefits of outdoor activities; stigma; and overcoming perceived risks. The importance of the outdoors for people living with dementia and their care partners is evident. There are implications for care policy and practice relating to the promotion of (social) health and well-being for people living with dementia.

Sustaining tenancies by ‘caring-with’: care ethics in social housing tenancy management

ABSTRACT This article contributes to scholarship that conceptualises housing, particularly social housing, as an infrastructure of care. Care for people with housing needs that cannot be met in the private market is shaped through the provision of social housing, and social housing can also be a site for caring (and careless) practices and relations. Using qualitative data gathered in interviews with tenancy managers at one of the largest social housing providers in Victoria, I argue that tenancy management must be understood as an integral pillar of the caring infrastructure social housing can provide. Tenancy managers who participated in this study understood tenancy management in social housing as a caring practice. They described their role as oriented around sustaining the tenancies of people with high and complex support needs who would otherwise be at high risk of homelessness. However, tenancy managers also faced consistent barriers to the enactment of tenancy-sustainment-as-care, which emerged when caring relationships between the actors involved in sustaining a tenancy broke down. This paper focuses on their experiences of overcoming barriers, resolving conflicts, and successfully sustaining tenancies. The analysis shows that ‘caring-with’ – i.e., working relationally to build collaborative networks of care-givers and care-receivers – can support tenancy sustainment.

How many people will live and die with serious illness in Ireland to 2040? Estimated needs and costs using microsimulation

As populations age, more people worldwide will live and die with serious illness like cancer, heart disease and dementia. Prior projections of serious illness prevalence and end-of-life care needs have typically used static population-level methods. We estimated future disease prevalence and healthcare costs by applying dynamic microsimulation models to high-quality individual-level panel data on older adults (aged 50 + ) in Ireland. We estimated that the number of people living and dying with serious illness will increase approximately 70 % over 20 years. Per-capita annual costs both at end of life and not at end of life increase substantially due to ageing populations and growing complexity. Total health system expenditures on care for people with serious illness are projected to double before accounting for rising cost of inputs in real terms. Decomposition of these estimates suggests that 39 % of additional costs are accounted for by rising absolute numbers of older people, 37 % by changing age distribution and growing life expectancy, and 23 % due to rising individual complexity including morbidity and functional limitations. Our results and methods will be of interest to other countries planning for the future population health needs, and formidable health system resources associated with these needs, in the coming years.

Approaches in care for people with variations of sex characteristics—focus groups in the European context on the strengths and challenges of multidisciplinary teams

Abstract Background New guidelines in the Consensus Statement on Management of Intersex Disorders by the Lawson Wilkins Pediatric Endocrine Society/European Society for Paediatric Endocrinology Consensus Group 2006 introduced multidisciplinary teams (MDTs) to provide care that involves collaboration between healthcare professionals, parents, and children with variations of sex characteristics (VSC). Aim The aim of this study was to examine a neglected but important field of collaboration among healthcare professionals and peer support groups who provide care for people with VSC. Outcomes The study outcome was the information obtained regarding the actual composition and collaboration of the multidisciplinary teams caring for children with VSC, including their collaboration with parents, peer support groups, and other care providers. Methods In this study we used an exploratory qualitative design based on mixed focus groups (in terms of professional background) and reflexive thematic analysis. Semi-structured focus group interview guides were used to obtain information about the participants’ viewpoints on the composition and challenges of, and collaboration between, peer support groups and members of multidisciplinary teams working to care for children with VSC and their parents. Seven focus groups were conducted with healthcare professionals and peer support groups in care teams in Central, Northern, and Western Europe. The data from the focus groups were examined using reflexive thematic analysis. Results The participants in the focus groups provided information regarding the use of multidisciplinary and interdisciplinary child- and family-oriented approaches and the strengths and challenges of collaboration and peer support groups. The results showed that the teams used a predominantly multidisciplinary approach and suffered from a lack of psychosocial providers, poor collaboration with peer support groups, and poor implementation of shared decision-making to address the clinical uncertainty of parents and people with VSC. Clinical Implications Clinicians should provide more psychosocial support and improve collaboration with peer support groups and nonmedical professionals. Strengths and Limitations This study is one of the first qualitative studies to provide information on the collaboration of multidisciplinary teams working to provide care for children with VSC and collaborate with their parents in the European context. However, due to language barriers, the dropout rate of participants, and the under-representation of peer support groups in the sample there was a lack of information on collaboration among healthcare professionals and peer support groups. Conclusions The collaboration between MDTs and parents does not involve adequate psychosocial and peer support or shared decision-making to address the uncertainty experienced by children and families when faced with information about variations of sex characteristics.

An expanded focus in advanced wound care for geriatric emergency management nursing: a case study analysis.

Geriatric emergency management (GEM) nursing has emerged as a critical response to the increasing number of emergency department (ED) visits by older people, particularly in North America and specifically in Canada. This demographic often presents with complex medical conditions and atypical disease manifestations. The GEM programme, implemented in Ontario, Canada, aims to provide targeted assessment and establish community connections for frail older individuals, helping prevent their decline and loss of independence. There is a significant demand for specialised wound care services in EDs and frontline ED staff have a limited capacity to provide these. Advanced wound management was integrated into the GEM nursing scope of practice in an initiative. Patients who received wound care from GEM nurses and clinical nurse specialists had positive outcomes; those treated by GEM nurses had shorter wait times. Although the wound care role requires additional training and adds to the GEM nurse workload, the advantages appear substantial. Merging geriatric-focused care with specialist wound management may significantly benefit the care and satisfaction of older people attending the ED, as well as improve patient flow in the ED. This initiative requires further consideration by healthcare leaders and policymakers.

Mapping the way: functional modelling for community-based integrated care for older people

BackgroundHealthcare system sustainability is challenged by several critical issues; one of the most pressing is the ageing population. Traditional, episodic care delivery models are not designed for older people who are medically complex and frail. These individuals would benefit from health and social care that is more comprehensive, coordinated, person-centred and accessible in the communities in which they live. Delivering this is a challenging endeavour. Community-based health and social care professionals are siloed, dispersed across various locations and sectors, each with their own mental models, electronic health information systems, and means of communication. To move away from fragmented care delivery models and towards a more integrated approach to care, an analysis of the process of community-based comprehensive geriatric assessment was conducted in an urban location in Atlantic Canada. The purpose of the study was to identify where in the community-based comprehensive geriatric assessment process challenges and opportunities existed for moving towards a more integrated model of care delivery.MethodThe functional resonance analysis method (FRAM) and dynamic FRAM (DynaFRAM) modelling were used to model the community-based health and social care system and create a hypothetical patient journey scenario. Data collected to inform modelling consisted of document review, focus groups, and semi-structured interviews with health and social care professionals providing care and service to older people in the community setting.Findings.Challenges and opportunities for implementing integrated care in the local context were identified. Findings from the FRAM and DynaFRAM analysis informed the co-design of multi-level process improvement recommendations that aim to move the local community-based comprehensive geriatric assessment process towards a more integrated model of care.ConclusionsA transformative redesign of community-based health and social care in the local context is necessary but cannot be accomplished without an understanding of how health and social care professionals conduct their work and how older people may receive care under the dynamic conditions. The FRAM and DynaFRAM modelling provided an enhanced understanding of system operations and functionality and demonstrated a critical step that should not be overlooked for decision-makers in their efforts to implement a more integrated model of care.

First-line managers´ perceptions of missed nursing care in community health care for older people-A phenomenographic study.

First-line managers in Swedish communities have responsibility for that care to older people is provided, staffing is sufficient and the budget is balanced in their unit. It is a struggle with limited resources due to a growing population in need of care. This can lead to missed nursing care. The aim was to describe first-line managers´ perceptions of missed nursing care in community health care for older people. A qualitative design with a phenomenographic approach, interviewing 24 first-line managers. Ethics approval for the study was received from the Research Ethics Committee at Karlstad University (Dnr HNT 2020/566). The results are shown in six descriptive categories containing 15 perceptions. The descriptive categories are 'occurrence of missed nursing care', 'becoming aware of missed nursing care', 'reasons for missed nursing care', 'missed nursing care has consequences for the older persons', 'missed nursing care has consequences for the staff' and 'taking action to decrease missed nursing care'. It is important for first-line managers to become aware of the existence and reasons for missed nursing, as it has consequences for older people and staff. Managers need to take missed nursing care seriously in order to work with improvements for maintaining good quality of care and patient safety.

Acadêmicos de enfermagem e a representação do cuidado à pessoa vivendo com hiv/aids

Objective: To describe the social representations of nursing students about the care of people living with HIV. Method: A descriptive study with a qualitative approach was carried out with 39 nursing students, whose evocations were processed by EVOC software and analyzed based on the Theory of Social Representations. Results: The term acceptance leads to a visibility of the suffering of living with HIV; The need for family support and the bond that must be established with the professionals appeared and, in contrast, the students bring representational elements about care where fear and prejudice are present. Conclusion: The representations that emerged present two divergent poles. Pointing out the need to prepare students to understand HIV and its implications in the provision of quality care.

Centering the person in development of a model of care for people with Parkinson’s disease: a qualitative study

Purpose Obtain the perspectives of people with Parkinson’s disease (PwPD) and their care partners (CPs) about their lived experiences with Parkinson’s Disease (PD) to characterize a new model of care that meets their biopsychosocial and healthcare needs. Methods This phenomenological study included semi-structured focus groups exploring PD diagnosis/care experiences and conceptualizations of an ideal model of care among PwPD and CPs. Data were analyzed via thematic analysis. Results Twenty-five individuals (PwPD, n = 18; CPs, n = 7) participated across four focus groups. Researchers developed four themes to describe participants’ lived experience with, barriers to, and needs for PD care. These themes characterize key hopes for care as: 1) person-centered, 2) coordinated, 3) provides access to education and information, and 4) builds on the benefits of community. Conclusions Participants emphasized that, beyond clinical interactions and diagnosis-centered conversations, they wished for holistic healthcare that acknowledged the larger picture of their life with PD. An ideal model of care for PwPD should aim to be person centered, maximize collaboration and coordination across multiple disciplines, provide access to a wide range of information and resources, refer to community centers and support groups, and be designed with ease of navigation in mind.