Optimizing access to and use of formal dementia care: Qualitative findings from the European Actifcare study.
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SUBMITTER: Kerpershoek L
PROVIDER: S-EPMC6851600 | biostudies-literature | 2019 Sep
REPOSITORIES: biostudies-literature
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Optimizing access to and use of formal dementia care: Qualitative findings from the European Actifcare study.
Kerpershoek Liselot L Wolfs Claire C Verhey Frans F Jelley Hannah H Woods Bob B Bieber Anja A Bartoszek Gabriele G Stephan Astrid A Selbaek Geir G Eriksen Siren S Sjölund Britt-Marie BM Hopper Louise L Irving Kate K Marques Maria J MJ Gonçalves-Pereira Manuel M Portolani Daniel D Zanetti Orazio O Vugt Marjolein M
Health & social care in the community 20190710 5
This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi-structured in-depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross-national analysis. Overall, analysis of the in-depth interviews revealed two major themes with five subcategories. The resul ...[more]
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Project description:BackgroundPeople with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals.MethodFocus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports.ResultsOverall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives.ConclusionFurther investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.
| S-EPMC5987478 | biostudies-literature
Project description:As part of the ActifCare (ACcess to Timely Formal Care) project, we conducted expert interviews in eight European countries with policy and political decision makers, or representatives of relevant institutions, to determine their perspectives on access to formal care for people with dementia and their carers.Each ActifCare country (Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Sweden, United Kingdom) conducted semi-structured interviews with 4-7 experts (total N = 38). The interview guide addressed the topics "Complexity and Continuity of Care", "Formal Services", and "Public Awareness". Country-specific analysis of interview transcripts used an inductive qualitative content analysis. Cross-national synthesis focused on similarities in themes across the ActifCare countries.The analysis revealed ten common themes and two additional sub-themes across countries. Among others, the experts highlighted the need for a coordinating role and the necessity of information to address issues of complexity and continuity of care, demanded person-centred, tailored, and multidisciplinary formal services, and referred to education, mass media and campaigns as means to raise public awareness.Policy and political decision makers appear well acquainted with current discussions among both researchers and practitioners of possible approaches to improve access to dementia care. Experts described pragmatic, realistic strategies to influence dementia care. Suggested innovations concerned how to achieve improved dementia care, rather than transforming the nature of the services provided. Knowledge gained in these expert interviews may be useful to national decision makers when they consider reshaping the organisation of dementia care, and may thus help to develop best-practice strategies and recommendations.
| S-EPMC5543593 | biostudies-other
Project description:BackgroundDue to a growing shortage in residential care, people with dementia will increasingly be encouraged to live at home for longer. Although people with dementia prefer extended independent living, this also puts more pressure on both their informal and formal care networks. To support (in)formal caregivers of people with dementia, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor the lifestyle, health, and safety of their care recipients. Despite their potential, these solutions will only be viable if they meet the expectations and needs of formal and informal caregivers of people with dementia.ObjectiveThe objective of this study was to explore the expected benefits, barriers, needs, and requirements toward unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling people with dementia.MethodsA combination of semistructured interviews and focus groups was used to collect data among informal (n=19) and formal (n=16) caregivers of people with dementia. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers, and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-Kåreborn.ResultsFormal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should particularly be used to monitor (the risk of) falls, day and night rhythm, personal hygiene, nocturnal restlessness, and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking self-care information, extended independent living, objective communication, prevention and proactive measures, emotional reassurance, and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. Main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed, and how the technology should be integrated into the existing work context.ConclusionsDespite the presence of barriers, formal and informal caregivers of people with dementia generally saw value in unobtrusive in-home monitoring, and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are considered. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care.
| S-EPMC8076981 | biostudies-literature
Project description:Background: The number of people living with dementia worldwide is increasing, particularly in low- and middle-income countries (LMICs) where little is known about existing post-diagnostic care and support. This study aimed to better understand healthcare provision for people living with dementia in Malaysia, and to identify priorities for providing timely, quality, and accessible care and support to all. Methods: This is a qualitative interview study on care providers and facilitators (health and community care professionals, paid carers, traditional medicine practitioners, faith healers, community leaders, non-governmental organisations). A topic guide, piloted in Malaysia and peer reviewed by all LMIC partners, elicited the understanding of dementia and dementia care and barriers and facilitators to care for people living with dementia and carers, and perceptions of key priorities for developing efficient, feasible, and sustainable dementia care pathways. Verbatim transcription of audio-recorded interviews was followed by iterative, thematic data analysis. Results: Twenty interviews were conducted (11 healthcare professionals, 4 traditional medicine practitioners, and 5 social support providers). The findings indicate that dementia care and support services exist in Malaysia, but that they are not fully utilised because of variations in infrastructure and facilities across the country. Despite a locally recognised pathway of care being available in an urban area, people with dementia still present to the healthcare system with advanced disease. The interviewees linked this to a public perception that symptoms of dementia, in particular, are normal sequelae of ageing. Earlier detection of dementia is commonly opportunistic when patients present to GPs, government clinic staff, and general physicians with other ailments. Dementia may only be identified by practitioners who have some specialist interest or expertise in it. Workforce factors that hindered early identification and management of dementia included lack of specialists, overburdened clinics, and limited knowledge of dementia and training in guideline use. Post-diagnostic social care was reported to be largely the domain of families, but additional community-based support was reported to be available in some areas. Raising awareness for both the public and medical professionals, prevention, and more support from the government are seen as key priorities to improve dementia management. Conclusions: This qualitative study provides novel insight into the availability, delivery, and use of post-diagnostic care and support in Malaysia from the perspective of care providers. The respondents in this study perceived that while there was a provision for dementia care in the hospital and community settings, the different care sectors are largely unaware of the services each provides. Future work should explore how care provision across different service sectors and providers can be supported to better facilitate patient access and referral between primary, secondary, and social care. The importance of supporting families to understand dementia and its progression, and strategies to help them care for relatives was emphasised. There is also a need for broad workforce training and development, at both the postgraduate and undergraduate levels, as well as improved general awareness in the community to encourage earlier help-seeking for symptoms of dementia. This will enable the use of preventive strategies and access to specialist services to optimise care and quality of life for people living with dementia in Malaysia.
| S-EPMC8333996 | biostudies-literature
Project description:BackgroundThe need to expand and better engage patients in primary care improvement persists.PurposeRecognizing a continuum of forms of engagement, this study focused on identifying lessons for optimizing patient partnerships, wherein engagement is characterized by shared decision-making and practice improvement codesign.MethodologyTwenty-three semistructured interviews with providers and patients involved in improvement efforts in seven U.S. primary care practices in the Academic Innovations Collaborative (AIC). The AIC aimed to implement primary care improvement, emphasizing patient engagement in the process. Data were analyzed thematically.ResultsSites varied in their achievement of patient partnerships, encountering material, technical, and sociocultural obstacles. Time was a challenge for all sites, as was engaging a diversity of patients. Technical training on improvement processes and shared learning "on the job" were important. External, organizational, and individual-level resources helped overcome sociocultural challenges: The AIC drove provider buy-in, a team-based improvement approach helped shift relationships from providers and recipients toward teammates, and individual qualities and behaviors that flattened hierarchies and strengthened interpersonal relationships further enhanced "teamness." A key factor influencing progress toward transformative partnerships was a strong shared learning journey, characterized by frequent interactions, proximity to improvement decision-making, and learning together from the "lived experience" of practice improvement. Teams came to value not only patients' knowledge but also changes wrought by working collaboratively over time.ConclusionEstablishing practice improvement partnerships remains challenging, but partnering with patients on improvement journeys offers distinctive gains for high-quality patient-centered care.Practice implicationsEngaging diverse patient partners requires significant disruption to organizational norms and routines, and the trend toward team-based primary care offers a fertile context for patient partnerships. Material, technical, and sociocultural resources should be evaluated not only for whether they overcome specific challenges but also for how they enhance the shared learning journey.
| S-EPMC7919701 | biostudies-literature
Project description:BackgroundContrary to Missed Nursing Care, some anecdotal data and sparse evidence has documented the tendency of nurses to anticipate some nursing interventions. However, no study has been conducted to date with the purpose of understanding this phenomenon and its underlying mechanisms and consequences. The aim of this study was to describe the phenomenon of delivering anticipated nursing care, its antecedents and consequences as perceived by nurses.MethodA descriptive qualitative study. The Consolidated Criteria for Reporting Qualitative Research guidelines were followed. A purposeful sample of 17 clinical nurses and nurse managers working in three Italian hospitals were interviewed in depth in 2019. The audio-recorded interviews were verbatim transcribed and thematically analysed.Results'Anticipated Nursing Care' is delivered significantly earlier than when expected by nurses in their care plan, by patients, by caregivers and by other members of the team. Medication administration, mobilisation of patients, hygiene care, changes of dressing, vital parameter monitoring, blood sampling and administrative activities were reported as interventions delivered before rather than when expected. Clinically stable patients have been reported to be at risk of receiving anticipated nursing care. Individual values and attitudes, group attitudes of being always ready for the "unexpected", implicit group norms to "leave the patients and the unit in order", high workloads, intertwined activities and work processes inside the units, have been reported as reasons for Anticipated Nursing Care. Effects of this phenomenon have been reported at the patients' and at the nurses' level.ConclusionAnticipated Nursing Care occurs when nurses perform interventions earlier than expected according to an implicit or explicit decision and not as a consequence of a request. The phenomenon requires future studies to detect its diffusion and to accumulate evidence. Its presence in daily practice, if confirmed, suggests that Missed Nursing Care studies should also consider the combined effect of these two phenomena as, on one hand, there may be the tendency to postpone and, on the other hand, the tendency to anticipate interventions.
| S-EPMC7541304 | biostudies-literature
Project description:BackgroundPeople experiencing homelessness (PEH) are known to be at higher risk of adverse health outcomes and premature mortality when compared to the housed population and often face significant barriers when attempting to access health services. This study aimed to better understand the specific health care needs of PEH and the barriers and facilitators associated with their timely and equitable access to health services in the European context.MethodsWe conducted an exploratory cross-national qualitative study involving people with lived experience of homelessness and health and social care professionals in Austria, Greece, Spain, and the UK. A total of 69 semi-structured interviews comprising 15 social care professionals, 19 health care professionals, and 35 PEH were completed, transcribed, and analysed thematically.ResultsFindings were organised into three overarching themes relating to the research question: (a) Health care needs of PEH, (b) Barriers to health care access, and (c) Facilitators to health care access. Overall, the general health of PEH was depicted as extremely poor, and mainstream health services were portrayed as ill-equipped to respond to the needs of this population. Adopting tailored approaches to care, especially involving trusted professionals in the delivery of care, was identified as a key strategy for overcoming existing barriers.ConclusionsThe results of this study indicate there to be a high degree of consistency in the health care needs of PEH and the barriers and facilitators associated with their access to health care across the various European settings. Homelessness in itself is recognized to represent an essential social determinant of health, with PEH at risk of unequal access to health services. Changes are thus required to facilitate PEH's access to mainstream primary care. This can also be further complemented by investment in 'in-reach' services and other tailored and person-centred forms of health care.Trial registrationThis study was registered retrospectively on June 6, 2022, in the registry of ClinicalTrials.gov under the number NCT05406687.
| S-EPMC10559410 | biostudies-literature
Project description:BackgroundCanada has the highest global age-adjusted incidence and prevalence rates of inflammatory bowel disease (IBD). Due to IBD patient volumes and limited resources, challenges to timely access to specialty care have emerged. To address this gap, the aim of this paper was to understand the experiences and perspectives of persons living with IBD with a focus on accessing health care.MethodsUsing a qualitative descriptive approach, patients diagnosed with IBD (≥18 years of age) were purposively sampled from rural and urban gastroenterology clinics and communities across Canada. Co-facilitated by a researcher and patient research partner, 14 focus groups were recorded, transcribed, and coded for themes. Thematic analysis was used to ascertain the congruence or discordance of IBD specialty care access experiences.ResultsA total of 63 individuals participated in the study. The majority of participants were female (41/63, 65%) and from urban/suburban regions (33/63, 52%), with a mean age of 48.39 (range 16-77 years). The analysis generated three main themes: (1) need for patient to be partner, (2) adapting IBD care access to individual context, and (3) patient-defined care priorities should guide access to IBD care.ConclusionsThe complexity of specialty care access for IBD patients cannot be underestimated. It is vital to possess a robust understanding of healthcare system structures, processes, and the impact of these factors on accessing care. Using a patient-centered exploration of barriers and facilitators, IBD specialty care access in Canada can be better understood and improved on provincial and national levels.
| S-EPMC9825304 | biostudies-literature
Project description:General practitioner (GP) treatment of dementia is often criticized as being ineffective and not implemented consistently enough. The causes and specific standpoints of GPs have not previously been thoroughly investigated. This paper focuses on the reasons and the criticisms levelled at GPs with regard to diagnosing dementia, and identifies approaches to enable optimization. The analysis is based on 41 semi-structured interviews with GPs in Hesse, Germany, in 2018. During the course of a content analysis, the interviewees' attitudes and behavioral patterns towards dementia diagnostics were to be analyzed. The results of the study show various challenges and problems of primary care in this field. The majority of the sample showed skepticism and reluctance with regard to the diagnosis of dementia. Six key problem areas were extracted from the interviews, which can be seen as root causes for the distance kept by GPs: 1) early delegation of patients due to role understanding, 2) attitude of pessimism towards dementia, 3) differential diagnosis perceived as an obstacle, 4) insufficient remuneration, 5) fear of patient stigmatization, and 6) lack of application. Some GPs demonstrated personal initiative with the aim of optimizing dementia diagnostics. Three approaches can be derived which could be used to improve the GP-based care of dementia: 1) self-efficacy, 2) differential diagnostics and treatment pathways, and 3) physician-patient communication.
| S-EPMC7272384 | biostudies-literature
Project description:BackgroundPeople experiencing homelessness (PEH) have a higher prevalence of adverse health outcomes and premature mortality compared to the non-homeless population. These include a higher burden of cancer and cancer-specific morbidity and mortality-outcomes that may be a consequence of significant barriers to accessing primary and secondary prevention and community health services. This study aimed to better comprehend the health needs and barriers to accessing preventive cancer care for PEH across four European countries as well as necessary considerations for developing interventions around cancer prevention for this population.MethodsIn this exploratory qualitative study, 69 semi-structured interviews were conducted across Austria, Greece, Spain, and the UK, with a sample comprising 15 professionals working in homelessness support services, 19 health professionals, and 35 PEH. Interviews took place between August 1 and October 31, 2021, and data were analysed inductively and iteratively following a thematic approach.FindingsFindings were organised into two overarching themes: (1) Experiences and understanding of cancer prevention and treatment and (2) Considerations for program interventions. While cancer was a significant worry among PEH across all settings, they generally had minimal knowledge and understanding of cancer symptoms and prevention. Specific programs for cancer prevention for PEH were described as almost non-existent. Health professionals in some settings indicated that cancer in PEH was often missed in the early stages and instead diagnosed when the severity of symptoms intensified.InterpretationOverall, our findings indicate many commonalities in the health needs of PEH and the barriers they face when they seek access to cancer-specific healthcare services in the European context.FundingThis study received funding from the European Union's Horizon 2020 Research and Innovation Programme under GA 965351.
| S-EPMC10393536 | biostudies-literature