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1.
Gerontologist ; 2024 Feb 13.
Artigo em Inglês | MEDLINE | ID: mdl-38349015

RESUMO

BACKGROUND AND OBJECTIVES: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention, has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study was to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making and , and identify costs and supportive conditions for the implementation of the intervention. RESEARCH DESIGN AND METHODS: A multiple case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, United Kingdom. RESULTS: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. DISCUSSION AND IMPLICATIONS: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied with committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.

2.
HRB Open Res ; 6: 12, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37954094

RESUMO

Background: Dementia research prioritisation allows for the systematic allocation of investment in dementia research by governments, funding agencies and the private sector. There is currently a lack of information available in Ireland regarding priority areas for dementia research. To address this gap, a dementia research prioritisation exercise was undertaken, consisting of an online survey of professionals in the dementia field and workshops for people living with dementia and family carers. Methods: (1) An anonymous online survey of professionals, based on an existing WHO global survey: the global survey was adapted to an Irish context and participants were asked to score 65 thematic research avenues under five criteria; (2) A mixed-methods exercise for people living with dementia and family carers: this involved two facilitated workshops where participants voted on the research themes they felt were important to them and should be addressed through research. Results: Eight of the top ten research priorities in the survey of professionals ( n=108) were focused on the delivery and quality of care and services for people with dementia and carers. Other research avenues ranked in the top ten focused on themes of timely and accurate diagnosis of dementia in primary health-care practices and diversifying therapeutic approaches in clinical trials. Participants in the workshops ( n=13) ranked 'better drugs and treatment for people with dementia', 'dementia prevention/ risk reduction' and 'care for people with dementia and carers' as their top priority areas. Conclusions: Findings from this prioritisation exercise will inform and motivate policymakers, funders and researchers to support and conduct dementia-focused research and ensure that the limited resources made available are spent on research that has the most impact for those who will benefit from and use the results of research.

3.
Age Ageing ; 52(3)2023 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-36861181

RESUMO

BACKGROUND: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. OBJECTIVES: to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. DESIGN: a pretest-posttest design. SETTING: in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. PARTICIPANTS: in total, 88 family caregivers completed baseline, intervention and follow-up assessments. METHODS: family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. RESULTS: family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. CONCLUSIONS: the mySupport intervention may be impactful in countries beyond the original setting.


Assuntos
Planejamento Antecipado de Cuidados , Demência , Humanos , Cuidadores , Canadá , Casas de Saúde , Demência/diagnóstico , Demência/terapia
4.
J Alzheimers Dis ; 91(2): 551-557, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36463448

RESUMO

Much is known about palliative care needs of persons with dementia and their family. Less is known about how to successfully implement models that address those needs. We present specialist models in the Netherlands (2017-2018) and Northern Ireland (2016-2017) contrasting its evaluations. From implementation failure in the Netherlands compared with successful implementation in Northern Ireland, we learn that recognizing roles and competencies among all involved is essential in developing effective partnership relationships. All of this is facilitated by referral before the end of life and offering various training programs and in-patient and out-patient services and therapies to show benefits early.


Assuntos
Demência , Cuidados Paliativos , Humanos , Irlanda do Norte , Países Baixos , Demência/terapia
5.
Artigo em Inglês | MEDLINE | ID: mdl-36429995

RESUMO

Taxi driving, a male-dominated occupation, is associated with an increased risk of cardiovascular disease (CVD). The increased risk is linked to a high prevalence of modifiable CVD risk factors including overweight/obesity, poor nutrition, smoking, excessive alcohol consumption and physical inactivity. Behaviour change interventions may prove advantageous, yet little research has been conducted to reduce CVD risk in this population. The purpose of this study was to co-design an eHealth intervention, 'ManGuard', to reduce CVD risk in male taxi drivers. The IDEAS framework was utilised to guide the development of the eHealth intervention, with the Behaviour Change Wheel (BCW) incorporated throughout to ensure the intervention was underpinned by behaviour change theory. Development and refinement of ManGuard was guided by current literature, input from a multidisciplinary team, an online survey, a systematic review and meta-analysis, and focus groups (n = 3) with male taxi drivers. Physical inactivity was identified as the prime behavior to change in order to reduce CVD risk in male taxi drivers. Male taxi drivers indicated a preference for an eHealth intervention to be delivered using smartphone technology, with a simple design, providing concise, straightforward, and relatable content, and with the ability to track and monitor progress.


Assuntos
Condução de Veículo , Doenças Cardiovasculares , Telemedicina , Humanos , Masculino , Doenças Cardiovasculares/epidemiologia , Doenças Cardiovasculares/prevenção & controle , Doenças Cardiovasculares/etiologia , Comportamento Sedentário , Inquéritos e Questionários , Revisões Sistemáticas como Assunto , Metanálise como Assunto
6.
BMC Geriatr ; 22(1): 822, 2022 10 26.
Artigo em Inglês | MEDLINE | ID: mdl-36289458

RESUMO

BACKGROUND: Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the Family Carer Decisional Support intervention is to inform family carers on end-of-life care options for a person living with advanced dementia and enable them to contribute to advance care planning. This implementation study proposes to; 1) adopt and apply the intervention internationally; and, 2) train nursing home staff to deliver the family carer decision support intervention. METHODS: This study will employ a multiple case study design to allow an understanding of the implementation process and to identify the factors which determine how well the intervention will work as intended. We will enrol nursing homes from each country (Canada n = 2 Republic of Ireland = 2, three regions in the UK n = 2 each, The Netherlands n = 2, Italy n = 2 and the Czech Republic n = 2) to reflect the range of characteristics in each national and local context. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. Our mixed methods study design has three phases to (1) establish knowledge about the context of implementation, (2) participant baseline information and measures and (3) follow up evaluation. DISCUSSION: The use of a multiple case study design will enable evaluation of the intervention in different national, regional, cultural, clinical, social and organisational contexts, and we anticipate collecting rich and in-depth data. While it is hoped that the intervention resources will impact on policy and practice in the nursing homes that are recruited to the study, the development of implementation guidelines will ensure impact on wider national policy and practice. It is our aim that the resources will be sustainable beyond the duration of the study and this will enable the resources to have a longstanding relevance for future advance care planning practice for staff, family carers and residents with advanced dementia.


Assuntos
Planejamento Antecipado de Cuidados , Demência , Assistência Terminal , Humanos , Cuidadores , Demência/terapia , Casas de Saúde , Assistência Terminal/métodos
7.
Palliat Med ; 36(9): 1351-1363, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-36065098

RESUMO

BACKGROUND: People with dementia and their caregivers often lack equitable access to hospice care which is a concern internationally. Domains of best practice in palliative care for this population exist and hospices are urged to become dementia friendly. AIM: This study aimed to evaluate the model of 'Hospice Enabled Dementia Partnership' mapped to international domains of best practice. DESIGN: Three-phased monitoring, group interview and individual interview study using a formative evaluation framework. SETTINGPARTICIPANTS: The partnership model was a collaboration between a large specialist palliative care hospice, a dementia charity and a Health Care Trust in the United Kingdom. Service documents were subjected to documentary review of monitoring activity and key indicators of service success. Group interviews and individual interviews took place with family carers (n = 12), health care professionals involved in delivering the service (n = 32) and senior professionals (n = 5) responsible for service commissioning in palliative or dementia care. RESULTS: One hundred people with dementia were referred to the service between May 2016 and December 2017. Thirty-eight of the 42 people who died, achieved their preferred place of care and died at home. Four themes were derived from the data 'Impact of Dementia', 'Value of the Service', 'Information and Learning Needs' and 'Working in Partnership'. CONCLUSIONS: Positive outcomes resulted from this best practice model; achievement of preferred place of care and death at home, dual benefits of therapies for patients and families and partnership in cross working and learning between services. Replication of this model should be considered internationally.


Assuntos
Demência , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Grupos Focais , Demência/terapia , Pesquisa Qualitativa
8.
Pilot Feasibility Stud ; 8(1): 209, 2022 Sep 14.
Artigo em Inglês | MEDLINE | ID: mdl-36104740

RESUMO

BACKGROUND: Men are at higher risk then women of developing cardiovascular disease (CVD), and male taxi drivers are a particularly high-risk group because of their typically unhealthy behaviours, such as poor eating habits, smoking and sedentary lifestyle. However, only two studies of behavioural interventions targeting taxi drivers have been identified, one of which reported a high attrition rate. Therefore, an eHealth intervention co-designed by taxi drivers may prove more acceptable and effective. The aim of this study is to assess the feasibility an eHealth intervention (ManGuard) to reduce CVD risk in male taxi drivers. METHODS: A randomised wait-list controlled trial will be conducted with a sample of 30 male taxi drivers to establish feasibility, including recruitment, engagement, and retention rates. Program usability and participant satisfaction will be assessed by a survey completed by all participants at 3 months after allocation. Additionally, an in-depth qualitative process evaluation to explore acceptability of the intervention will be conducted with a subset of participants by semi-structured telephone interviews. Preliminary efficacy of ManGuard for improving key CVD-related outcomes will be assessed, including biomarkers (total cholesterol, HDL cholesterol, LDL cholesterol, triglycerides, and total/HDL cholesterol ratio), blood pressure, anthropometry (body mass index, body fat percentage, and waist circumference), physical activity (accelerometery, and self-report) and psychosocial status (health-related quality of life, self-efficacy, and social support). Outcomes will be assessed at baseline, 7 weeks, and 3 months after group allocation. The wait-list control group will be offered access to the intervention at the completion of data collection. DISCUSSION: eHealth interventions show potential for promoting behaviour change and reducing CVD risk in men, yet there remains a paucity of robust evidence pertaining to male taxi drivers, classified as a high-risk group. This study uses a randomised controlled trial to assess the feasibility of ManGuard for reducing CVD risk in male taxi drivers. It is envisaged that this study will inform a fully powered trial that will determine the effectiveness of eHealth interventions for this high risk and underserved population. TRIAL REGISTRATION: This trial has been registered prospectively on the ISRCTN registry on 5 January 2022, registration number ISRCTN29693943.

9.
BMC Palliat Care ; 21(1): 76, 2022 May 17.
Artigo em Inglês | MEDLINE | ID: mdl-35578219

RESUMO

BACKGROUND: To support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005. METHODS: We analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care. RESULTS: The booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care. CONCLUSIONS: We identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.


Assuntos
Demência , Assistência Terminal , Cuidadores , Morte , Demência/terapia , Família , Humanos , Cuidados Paliativos/métodos , Folhetos , Conforto do Paciente
10.
BMC Geriatr ; 22(1): 452, 2022 05 25.
Artigo em Inglês | MEDLINE | ID: mdl-35610581

RESUMO

OBJECTIVES: To determine the feasibility, implementation and outcomes of an Anticipatory Care Planning (ACP) intervention in primary care to assist older adults at risk of functional decline by developing a personalized support plan. DESIGN: Feasibility cluster randomized control trial. SETTING AND PARTICIPANTS: Eight primary care practices (four in Northern Ireland, United Kingdom and four in the Republic of Ireland) were randomly assigned to either intervention or control arm. Eligible patients were those identified in each practice as 70 years of age or older and assessed as at risk of functional decline. Study participants (intervention n = 34, control n = 31) and research staff were not blinded to group assignment. ANTICIPATORY CARE INTERVENTION: The intervention delivered by a registered nurse including: a) a home-based patient assessment; b) care planning on the basis of a holistic patient assessment, and c) documentation of a support plan. OUTCOME MEASURES: A conceptual framework (RE-AIM) guided the assessment on the potential impact of the ACP intervention on patient quality of life, mental health, healthcare utilisation, costs, perception of person-centred care, and reduction of potentially inappropriate prescribing. Data were collected at baseline and at 10 weeks and six months following delivery of the intervention. RESULTS: All pre-specified feasibility indicators were met. Patients were unanimous in the acceptance of the ACP intervention. Health care providers viewed the ACP intervention as feasible to implement in routine clinical practice with attending community supports. While there were no significant differences on the primary outcomes (EQ-5D-5L: -0.07 (-0.17, 0.04) p = .180; CES-D: 1.2 (-2.5, 4.8) p = .468) and most secondary measures, ancillary analysis on social support showed responsiveness to the intervention. Incremental cost analysis revealed a mean reduction in costs of €320 per patient (95% CI -31 to 25; p = 0.82) for intervention relative to the control. CONCLUSIONS: We successfully tested the ACP intervention in primary care settings and have shown that it is feasible to implement. The ACP intervention deserves further testing in a definitive trial to determine whether its implementation would lead to better outcomes or reduced costs. TRIAL REGISTRATION: Clinicaltrials.gov, ID: NCT03902743 . Registered on 4 April 2019.


Assuntos
Vida Independente , Qualidade de Vida , Idoso , Estudos de Viabilidade , Pessoal de Saúde , Humanos , Reino Unido/epidemiologia
11.
BMC Geriatr ; 22(1): 419, 2022 05 13.
Artigo em Inglês | MEDLINE | ID: mdl-35562712

RESUMO

BACKGROUND: Advance care planning in nursing homes is important to ensure the wishes and preferences of residents are recorded, especially during the COVID-19 pandemic. However, care staff and family members frequently report feeling unprepared for these conversations. More resources are needed to support them with these necessary discussions. This research aimed to develop, implement and evaluate a website intervention for care staff and family members to provide training and information about advance care planning during COVID-19. METHODS: The research was a primarily qualitative case study design, comprising multiple UK nursing home cases. Data collection included semi-structured interviews with care staff and family members which were coded and analysed thematically. A narrative synthesis was produced for each case, culminating in a thematic cross-case analysis of the total findings. Theoretical propositions were refined throughout the research. RESULTS: Eight nursing homes took part in the study, involving 35 care staff and 19 family members. Findings were reported according to the RE-AIM framework which identified the reach, effectiveness, adoption, implementation and maintenance of the intervention. Themes included: website content that was well received; suggestions for improvement; implementation barriers and facilitators; examples of organisational and personal impact. CONCLUSIONS: Four theoretical propositions relating to advance care planning in nursing homes are presented, relating to: training and information needs, accessibility, context, and encouraging conversations. Implications for practice and training include an awareness of diverse learning styles, re-enforcing the right to be involved in advance care planning and encouraging opportunities for facilitated discussion. TRIAL REGISTRATION: ISRCTN registry (ID 18003630 ) on 19.05.21.


Assuntos
Planejamento Antecipado de Cuidados , COVID-19 , COVID-19/epidemiologia , Humanos , Casas de Saúde , Pandemias , Reino Unido/epidemiologia
12.
Pilot Feasibility Stud ; 8(1): 10, 2022 Jan 19.
Artigo em Inglês | MEDLINE | ID: mdl-35045877

RESUMO

BACKGROUND: Anticipatory care is becoming increasingly important in effectively managing complex multimorbidity in aging populations, preventing further functional decline, and avoiding hospital admissions. This study aimed to elicit the feedback of participating general practitioners, practice managers, nurses and an adjunct pharmacist on the implementation strengths and limitations of a nurse-led, person-centered anticipatory care planning (ACP) intervention for older people at risk of functional decline in a primary care setting. The findings have implications for a full trial and intervention design. METHODS: As part of a feasibility cluster randomized controlled trial (cRCT) testing the ACP intervention, we sought feedback from implementing stakeholders: general practitioners (N = 3), practice staff (N = 3), research nurses (N = 5), and adjunct pharmacist (N = 1) in both the Republic of Ireland (ROI) and Northern Ireland (NI), UK. Following written, informed consent, they were interviewed to investigate their experience of participating in the implementation of the ACP intervention as part of the feasibility trial, and elicit any recommendations for a full trial. Using the Consolidated Framework for Implementation Research, thematic analysis was employed to analyze data. The intervention consisted of home visits by specially trained nurses who assessed participants' health, discussed with them their health goals and plans, and devised an anticipatory care plan following consultation with participants' General Practitioners and the adjunct clinical pharmacist. RESULTS: Participating stakeholders indicated that the strengths of the implementation process included the training provided to the nurses, constructive collaboration of the research team, and structure of implementation process. Perceived limitations included the selection process and screening tool, communication between the research team and the nurses, the assessment questionnaire, and the final document left with the patient, as well as lack of access to medical records for the adjunct pharmacist. Recommendations include better communication and team-wide consensus on alterations to procedure and documents, and standardized protocols for patient selection, data collection, and reporting for research nurses. CONCLUSIONS: The findings have identified strengths of the implementation process on which to build, and recognized limitations which can now be addressed to ensure improved efficiency and effectiveness in future trials. TRIAL REGISTRATION: Clinicaltrials.gov , ID: NCT03902743. Registered on 4 April 2019.

13.
Patient Educ Couns ; 105(4): 965-973, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34376304

RESUMO

OBJECTIVE: We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative's end-of-life care. METHODS: We used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analyzed and compared the QPLs using content analysis. RESULTS: Four to 20 family caregivers per country were involved. QPLs ranged from 15 to 24 questions. A quarter (24%) of the questions appeared in more than one country's QPL. One question was included in all QPLs: "Can you tell me more about palliative care in dementia?". CONCLUSION: Family caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs. PRACTICE IMPLICATIONS: Prompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs' use.


Assuntos
Demência , Assistência Terminal , Cuidadores , Demência/terapia , Países em Desenvolvimento , Família , Humanos , Casas de Saúde
14.
Healthcare (Basel) ; 9(12)2021 Dec 09.
Artigo em Inglês | MEDLINE | ID: mdl-34946437

RESUMO

BACKGROUND: Globally, close to one billion people are living with a mental health disorder, and it is one of the most neglected areas in Public Health. People with severe mental illness have greater mortality risk than the general population, experience health care inequalities throughout life and represent a vulnerable, under-served and under-treated population, who have been overlooked in health inequality research to date. There is currently a dearth of evidence in relation to understanding the palliative care needs of people with severe mental illness and how future care delivery can be designed to both recognise and respond to those needs. This study aims to co-design an evidenced informed service model of integrated palliative care for persons living with a severe mental illness. METHODS: This qualitative sequential study underpinned by interpretivism will have six phases. An expert reference group will be established in Phase 1, to inform all stages of this study. Phase 2 will include a systematic literature review to synthesise current evidence in relation to palliative care service provision for people with severe mental illness. In Phase 3, qualitative interviews will be undertaken with both, patients who have a severe mental illness and in receipt of palliative care (n = 13), and bereaved caregivers of people who have died 6-18 months previously with a diagnosis of severe mental illness (n = 13), across two recruitment sties in the United Kingdom. Focus groups (n = 4) with both mental health and palliative care multidisciplinary staff will be undertaken across the two recruitment sites in Phase 4. Phase 5 will involve the co-design of a service model of integrated palliative care for persons living with severe mental illness. Phase 6 will develop practice recommendations for this client cohort. DISCUSSION: Palliative care needs to be available at all levels of care systems; it is estimated that, globally, only 14% of patients who need palliative care receive it. Reducing inequalities experienced by people with severe mental illness is embedded in the National Health Service Long Term Plan. Internationally, the gap between those with a mental illness needing care and those with access to care remains considerable. Future policy and practice will benefit from a better understanding of the needs of this client cohort and the development of a co-designed integrated care pathway to facilitate timely access to palliative care for people with a severe mental illness.

15.
BMC Palliat Care ; 20(1): 193, 2021 Dec 28.
Artigo em Inglês | MEDLINE | ID: mdl-34963453

RESUMO

BACKGROUND: Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers' quality of life. This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads' emotional functioning and self-efficacy. METHODS: We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. DISCUSSION: DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. TRIAL REGISTRATION: Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349 . DATE AND VERSION IDENTIFIER: 20211209_DIAdIC_Protocol_Article.


Assuntos
Cuidadores , Neoplasias , Humanos , Internet , Estudos Multicêntricos como Assunto , Neoplasias/terapia , Sistemas de Apoio Psicossocial , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto
16.
Artigo em Inglês | MEDLINE | ID: mdl-34574501

RESUMO

The debate about the ethical decision-making process in the healthcare context has been enriched with a theory called "nudging", which has been defined as the framing of information that can significantly influence behaviour without restricting choice. The literature shows very limited data on the opinion and experience of palliative care healthcare professionals on the use of nudging techniques in their care setting. The aim of this study is to explore the beliefs of experienced palliative care professionals towards nudging. We performed a qualitative study using textual data collected through a focus group. It was audio-recorded, and the transcripts were subjected to a thematic analysis. It was performed within an oncological research hospital with a small and multidisciplinary group of healthcare professionals specialised in PC. Participants reported two overarching positions grounded in two main themes: (1) translating nudging in the PC setting and (2) towards a neutral space. The participants found few justifications for the use of nudging in the PC field, even if it can be very attractive and reassuring. Participants also expressed concerns about the excessive risk of developing pure paternalism.


Assuntos
Pessoal de Saúde , Cuidados Paliativos , Grupos Focais , Humanos , Princípios Morais , Pesquisa Qualitativa
17.
BMC Geriatr ; 21(1): 456, 2021 08 09.
Artigo em Inglês | MEDLINE | ID: mdl-34372794

RESUMO

BACKGROUND: Nursing home residents are typically older adults with high levels of chronic illness and impairment. As such, they are particularly susceptible to severe complications and mortality from COVID-19. Since all nursing home residents are at increased risk, nursing home care staff need to know what residents would want to happen should they become infected with COVID-19. This study aims to develop and evaluate advance care planning (ACP) COVID-centric online training and information resources for nursing home staff and family members of residents, to improve care at the end of life during a COVID-19 outbreak. Based on the findings we will develop implementation guidelines for nursing homes to ensure wider impact and application during the pandemic and beyond. METHODS: The content of the training and information resources will be based on a rapid review of literature and guidance on ACP in the context of COVID-19 and consultation with the study expert reference group. An integrated communications company will then work alongside the research team to design the online training and information resources. To evaluate the resources, we will employ a multiple case study design where a nursing home (defined as an institutional setting in which nursing care is provided to older adults on-site 24 h a day) will be the unit of analysis or 'case'. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. We will recruit and interview staff and family members from between 6 and 9 nursing homes across Northern Ireland, England and Scotland and gather quantitative data from a feedback survey included in the training and information resources. DISCUSSION: The Necessary Discussions study is very timely given the challenging experiences of nursing homes, their staff, residents and their family members during the COVID-19 pandemic. It meets a key need and addresses an important gap in research and practice. The training and information resources will be 'COVID-centric', but they will also have a longstanding relevance for future ACP practice in UK care homes. TRIAL REGISTRATION: ISRCTN registry ( ID 18003630 ) on 19.05.21.


Assuntos
Planejamento Antecipado de Cuidados , COVID-19 , Recursos Humanos de Enfermagem , Idoso , Família , Humanos , Casas de Saúde , Pandemias , SARS-CoV-2
18.
BMC Health Serv Res ; 21(1): 871, 2021 Aug 25.
Artigo em Inglês | MEDLINE | ID: mdl-34433441

RESUMO

BACKGROUND: Aging populations present a challenge to health systems internationally, due to the increasing complexity of care for older adults living with functional decline. This study aimed to elicit expert views of key health professionals on effective and sustainable implementation of a nurse-led, person-centred anticipatory care planning (ACP) intervention for older adults at risk of functional decline in a primary care setting. METHODS: We examined the feasibility of an ACP intervention in a trans-jurisdictional feasibility cluster randomized controlled trial consisting of home visits by research nurses who assessed participants' health, discussed their health goals and devised an anticipatory care plan following consultation with participants' GPs and adjunct clinical pharmacist. As part of the project, we elicited the views and recommendations of experienced key health professionals working with the target population who were recruited using a 'snowballing technique' in cooperation with older people health networks in the Republic of Ireland (ROI) and Northern Ireland (NI), United Kingdom [n = 16: 7 ROI, 9 NI]. Following receipt of written information about the intervention and the provision of informed consent, the health professionals were interviewed to determine their expert views on the feasibility of the ACP intervention and recommendations for successful implementation. Data were analyzed using thematic analysis. RESULTS: The ACP intervention was perceived to be beneficial for most older patients with multimorbidity. Effective and sustainable implementation was said to be facilitated by accurate and timely patient selection, GP buy-in, use of existing structures within health systems, multidisciplinary and integrated working, ACP nurse training, as well as patient health literacy. Barriers emerged as significant work already undertaken, increasing workload, lack of time, funding and resources, fragmented services, and geographical inequalities. CONCLUSIONS: The key health professionals perceived the ACP intervention to be highly beneficial to patients, with significant potential to prevent or avoid functional decline and hospital admissions. They suggested that successful implementation of this primary care based, whole-person approach would involve integrated and multi-disciplinary working, GP buy in, patient health education, and ACP nurse training. The findings have potential implications for a full trial, and patient care and health policy. TRIAL REGISTRATION: Clinicaltrials.gov, ID: NCT03902743 . Registered on 4 April 2019.


Assuntos
Planejamento Antecipado de Cuidados , Idoso , Pessoal de Saúde , Política de Saúde , Humanos , Atenção Primária à Saúde , Encaminhamento e Consulta
19.
PLoS One ; 16(5): e0251978, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34015046

RESUMO

BACKGROUND: As the population of older adults increases, the complexity of care required to support those who choose to remain in the community amplifies. Anticipatory Care Planning (ACP), through earlier identification of healthcare needs, is evidenced to improve quality of life, decrease aggressive interventions, and prolong life. With patient acceptability of growing importance in the design, implementation, and evaluation of healthcare interventions, this study reports on the acceptability of a primary care based ACP intervention on the island of Ireland. METHODS: As part of the evaluation of a feasibility cluster randomized controlled trial (cRCT) testing an ACP intervention for older people at risk of functional decline, intervention participants [n = 34] were interviewed in their homes at 10-week follow-up to determine acceptability. The intervention consisted of home visits by specifically trained registered nurses who assessed participants' health, discussed their health goals and plans, and devised an anticipatory care plan in collaboration with participants' GPs and adjunct clinical pharmacist. Thematic analysis was employed to analyze interview data. The feasibility cRCT involved eight general practitioner (GP) practices as cluster sites, stratified by jurisdiction, four in Northern Ireland (NI) (two intervention, two control), and four in the Republic of Ireland (ROI) (two intervention, two control). Participants were assessed for risk of functional decline. A total of 34 patients received the intervention and 31 received usual care. FINDINGS: Thematic analysis resulted in five main themes: timing of intervention, understanding of ACP, personality & individual differences, loneliness & social isolation, and views on healthcare provision. These map across the Four Factor Model of Acceptability ('4FMA'), a newly developed conceptual framework comprising four components: intervention factors, personal factors, social support factors, and healthcare provision factors. CONCLUSION: Acceptability of this primary care based ACP intervention was high, with nurses' home visits, GP anchorage, multidisciplinary working, personalized approach, and active listening regarded as beneficial. Appropriate timing, and patient health education emerged as vital.


Assuntos
Papel do Profissional de Enfermagem , Atenção Primária à Saúde/tendências , Pesquisa Qualitativa , Idoso , Idoso de 80 Anos ou mais , Humanos , Masculino , Irlanda do Norte/epidemiologia , Qualidade de Vida , Fatores de Risco
20.
Can Pharm J (Ott) ; 154(2): 100-109, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33868521

RESUMO

BACKGROUND: Fifty percent of antibiotic courses in long-term care facilities (LTCFs) are unnecessary, leading to increased risk of harm. Most studies to improve antibiotic prescribing in LTCFs showed modest and unsustained results. We aimed to identify facilitators, barriers and strategies in implementing a urinary tract infection (UTI)-focused antimicrobial stewardship (AS) intervention at a LTCF, with the secondary objective of exploring the pharmacist's potential roles. METHODS: The study used a qualitative descriptive design. Participants attended either a focus group or one-on-one interview. Data were analyzed inductively using a codebook modified in an iterative analytic process. Barrier and facilitator themes were mapped using the capability, opportunity, motivation and behaviour (COM-B) model. Similarly, themes were identified from the transcripts regarding the pharmacist's roles. RESULTS: Sixteen participants were interviewed. Most barriers and facilitators mapped to the opportunities domain of the COM-B model. The main barrier themes were lack of access, lack of knowledge, ineffective communication, lack of resources and external factors, while the main facilitator themes were education, effective collaboration, good communication, sufficient resources and access. For the pharmacist's role, the barrier themes were ineffective collaboration and communication. CONCLUSION: This study supports the importance of tailoring interventions to target factors underlying barriers to behaviour change. At this LTCF, an effective antimicrobial stewardship intervention should incorporate strategies to improve access, knowledge, communication and collaboration in its design, having sufficient resources and addressing external factors to optimize its success and long-term sustainability. Can Pharm J (Ott) 2021;154:xx-xx.

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