scholarly journals Key components of post-diagnostic support for people with dementia and their carers: A qualitative study

PLoS ONE ◽  
2021 ◽  
Vol 16 (12) ◽  
pp. e0260506
Author(s):  
Claire Bamford ◽  
Alison Wheatley ◽  
Greta Brunskill ◽  
Laura Booi ◽  
Louise Allan ◽  
...  
Keyword(s):  
Focus Groups ◽  
Good Practice ◽  
National Guidelines ◽  
Frontline Staff ◽  
England And Wales ◽  
People With Dementia ◽  
Key Stakeholders ◽  
Practical Support ◽  
Care Systems ◽  
Diagnostic Support

Background There has been a shift in focus of international dementia policies from improving diagnostic rates to enhancing the post-diagnostic support provided to people with dementia and their carers. There is, however, little agreement over what constitutes good post-diagnostic support. This study aimed to identify the components of post-diagnostic dementia support. Methods We adopted a qualitative design using interviews, focus groups and observation to explore the perspectives of key stakeholders on the content of post-diagnostic dementia support. Purposive sampling was used to identify sites in England and Wales recognised as delivering good practice. Participants included 17 people with dementia, 31 carers, 68 service managers or funders, and 78 frontline staff. Interviews and focus groups were audio recorded and transcribed for analysis. Forty-eight sessions of observation were completed and recorded in fieldnotes. Components were identified through an inductive, thematic approach and cross-checked against national guidelines and existing frameworks; they were subsequently critically reviewed by a range of experts and our mixed stakeholder panel. Results Twenty distinct components of post-diagnostic support were identified, related to five themes: timely identification and management of needs; understanding and managing dementia; emotional and psychological wellbeing; practical support; and integrating support. The first and last of these were cross-cutting themes facilitating the delivery of a unique constellation of components of post-diagnostic support to each individual living with dementia or dyad at a particular time. Conclusions Our work offers an empirically based framework to inform the development and delivery of holistic, integrated and continuous dementia care from diagnosis to end of life. It highlights the relevance of many components to both people living with dementia and their carers. Since the framework was developed in England and Wales, further research is needed to explore the relevance of our components to other sectors, countries and care systems.

scholarly journals 211 - Changes to post-diagnostic dementia support in England and Wales during the COVID-19 pandemic

2021 ◽  
Vol 33 (S1) ◽  
pp. 13-13
Author(s):  
Alison Wheatley ◽  
Marie Poole ◽  
Louise Robinson
Keyword(s):  
Social Care ◽  
Third Sector ◽  
Full Time ◽  
England And Wales ◽  
Team Meetings ◽  
Use Of Technology ◽  
People With Dementia ◽  
Health And Social Care ◽  
The Impact ◽  
Diagnostic Support

Background:The COVID-19 pandemic precipitated widespread change across health and social care in England and Wales. A series of lockdowns and UK Government guidance designed to reduce the spread of COVID-19 which emphasised social distancing and increased use of personal protective equipment led to changes such as increased use of remote consultation technologies and the closure of services deemed non-essential. This included many services for people with dementia and their families, such as day centres and dementia cafes.Objective:To explore the changes made to services during the pandemic and the impact of these changes on the delivery of good post-diagnostic dementia support.Method:Professionals who had previously been recruited to the ongoing PriDem qualitative study were approached for follow up interview. Eighteen interviews with a total of 21 professionals working in health, social care and the third sector were conducted using telephone or video conferencing.Interviews were audio recorded, transcribed and checked prior to thematic analysis.Results:Key themes emerging from preliminary analysis of the data include: uncertainty about the future and the need to adapt quickly to shifting guidance; changing job roles and ways of working; the emotional and physical impact of the pandemic on staff working with people with dementia and their families; and the impact of changes made (e.g. increased PPE, remote working) on the ability to deliver post-diagnostic support. However, there were also some unintended positive outcomes of the changes. These included the ability to include family members living at a distance in remote consultations, allowing for more robust history-taking, as well as the uptake of technology to facilitate cross-sector and multidisciplinary working between professionals.Conclusion:Delivering post-diagnostic dementia support during COVID-19 was challenging and forced dementia services to make adaptations. Participants expected that some of these changes would be incorporated into post-pandemic work, for example increased use of technology for multidisciplinary team meetings or blended approaches to patient-facing services involving both virtual and face to face work as appropriate. However, most participants agreed that it was not appropriate nor desirable to provide fully remote post-diagnostic support on a full time basis.

scholarly journals Exploring good practice in life story work with people with dementia: The findings of a qualitative study looking at the multiple views of stakeholders

Dementia ◽  
2018 ◽  
Vol 19 (2) ◽  
pp. 182-194 ◽  
Author(s):  
Kate Gridley ◽  
Yvonne Birks ◽  
Gillian Parker
Keyword(s):  
Focus Groups ◽  
Life Story ◽  
Good Practice ◽  
Family Carers ◽  
People With Dementia ◽  
Practice Approach ◽  
Story Work ◽  
The Individual ◽  
Person With Dementia ◽  
Design And Methods

Introduction Despite growing international interest in life story work as a tool for person-centred dementia care, there is little agreement on what constitutes good practice and little evidence from the perspectives of people with dementia or their family carers. Design and methods This paper reports the findings from the qualitative element of a larger study looking at the feasibility of evaluating life story work. Ten focus groups were held with 73 participants: four groups of people with dementia (25 participants); three with family carers (21 participants); and three with staff, professionals and volunteers with experience of life story work (27 participants). Findings: It became apparent through our focus groups that, when people talk about ‘life story work’, different people mean different things. This related to both process and outcomes. In particular, a person with dementia may have very different views from others about what life story work is for and how their life story products should be used. There was general agreement that a good practice approach would be tailored to the individual needs and preferences of the person with dementia. However, in practice many settings used templates and the process was led by staff or completed by family carers. Conclusion We produced nine key features of good practice which could be used to guide the life story work process. Key elements include the recognition that not everyone will want to take part in life story work and that some people may even find it distressing; the importance of being led by the person with dementia themselves; the need for training and support for staff, carers and volunteers; and the potential for life story work to celebrate the person’s life today and look to the future.

Attitudes, Beliefs, and Practices Regarding Asthma Care Among Providers and Adult Asthmatics in Imperial County

2003 ◽  
Vol 1 (2) ◽  
pp. 88-100
Author(s):  
Paula Kriner ◽  
Yolanda Bernal
Keyword(s):  
Focus Groups ◽  
Cultural Beliefs ◽  
National Guidelines ◽  
Medical Practitioners ◽  
Beliefs And Practices ◽  
Attitudes And Practices ◽  
Hospitalization Rates ◽  
Adult Asthmatic ◽  
Asthma Hospitalization ◽  
Survey Results

Asthma is a major cause of morbidity in children and adults. Imperial County has reported among the highest asthma hospitalization rates in the state. Factors such as poverty, access to care, poor selfmanagement skills, and ethnocultural beliefs may influence asthma exacerbations. Provider and adult asthmatic attitudes, beliefs, and practices regarding asthma were examined using a mixed-methods approach: a survey to evaluate provider conformance with national guidelines, and focus groups targeting medical practitioners and adult asthmatics. Half of all providers who treat asthmatics completed a self-administered survey about asthma diagnosis; clinical monitoring of patients; treatment; patient education; and practice guidelines. Provider focus groups further explored survey results. Adult asthmatics participated in Spanishlanguage focus groups exploring cultural beliefs, attitudes, and practices. El asma es la mayor causa de morbilidad entre niños y adultos. El Condado de Imperial ha reportado las tazas más altas de hospitalización a causa de asma en el estado. Factores como la pobreza, acceso a cuidado médico, falta de experiencia sobre como manejar la enfermedad, y creencias étnicas y culturales pueden tener una influencia en las exacerbaciones del asma. Las actitudes, creencias, y prácticas de proveedores de atención médica y adultos concerniente al asma fueron examinadas utilizando varios métodos: una encuesta con el fin de evaluar el nivel de conformidad de los proveedores según las pautas establecidas a nivel nacional, y grupos foco con médicos y adultos con asma. La mitad de los proveedores que proveen atención a asmáticos completaron una encuesta acerca del diagnosis de asma; el monitoreo clínico de los pacientes; administración de tratamiento; educación a los pacientes; y pautas establecidas para proveer atención a pacientes con asma. Los grupos foco con los proveedores exploraron aun más los resultados de las encuestas. Los adultos con asma participaron en grupos foco dirigidos en español para explorar más a fondo las creencias culturales, actitudes y prácticas.

Involving people with dementia and their informal caregivers in the development process of assistive technology: Description and evaluation of a user-centered design (Preprint)

2020 ◽  
Author(s):  
Iris A.G.M. Geerts ◽  
Liselore J.A.E Snaphaan ◽  
Inge M.B. Bongers
Keyword(s):  
Focus Groups ◽  
Assistive Technology ◽  
Field Study ◽  
Development Process ◽  
Technology Development ◽  
Informal Caregivers ◽  
Assistive Technologies ◽  
User Centered Design ◽  
People With Dementia ◽  
User Centered

BACKGROUND Despite the potential value of assistive technology to support people with dementia (PWD) in everyday activities, use of these technologies is still limited. To ensure that assistive technologies better address the specific needs and daily context of PWD and their informal caregivers, it is particularly important to involve them in all different phases of assistive technology development. The literature rarely describes the involvement of PWD throughout the development process of assistive technologies, which makes it difficult to further reflect on and improve active involvement of PWD. OBJECTIVE This two-part study aimed to gather insights on the user-centered design (UCD) applied in the development process of the alpha prototype of the serious game PLAYTIME by describing the methods and procedures of the UCD as well as evaluating the UCD from the perspective of all involved stakeholders. METHODS The first three phases of the user-driven Living Lab of Innovate Dementia 2.0 were applied to directly involve PWD and their informal caregivers through qualitative research methods, including focus groups and a context-field study, in the development of the alpha prototype of PLAYTIME from exploration to design to testing. After the testing phase, a total number of 18 semi-structured interviews were conducted with PWD, their informal caregivers and the project members of PLAYTIME to evaluate the applied UCD from the perspective of all involved stakeholders. The interviews addressed five of the principles for successful UCD and the appropriateness of the different methods used in the focus groups and context-field study. RESULTS Results of the interviews focused, amongst others, on the level of involvement of PWD and their informal caregivers in the development process, the input provided by PWD and their informal caregivers, the value of early prototyping, continuous iterations of design solutions and in-context testing, the role of dementia care professionals in the multidisciplinary project team, and the appropriateness of open- and closed-ended questions for obtaining input from PWD and their informal caregivers. CONCLUSIONS The description and evaluation of the UCD applied in the development process of the alpha prototype of PLAYTIME resulted in several insights on the relevance of UCD for all involved stakeholders as well as how PWD can be involved in the subsequent phases of usable and meaningful assistive technology development.

scholarly journals Improving support for breastfeeding mothers: a qualitative study on the experiences of breastfeeding among mothers who reside in a deprived and culturally diverse community

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Erica Jane Cook ◽  
Faye Powell ◽  
Nasreen Ali ◽  
Catrin Penn-Jones ◽  
Bertha Ochieng ◽  
...  
Keyword(s):  
Health Care ◽  
Focus Groups ◽  
Health Care Professionals ◽  
Culturally Diverse ◽  
Local Community ◽  
Framework Analysis ◽  
Black African ◽  
Early Stages ◽  
Practical Support ◽  
Diverse Community

Abstract Background The United Kingdom has one of the lowest breastfeeding rates in Europe, with the initiation and continuation of breastfeeding shown to be closely related to the mothers’ age, ethnicity and social class. Whilst the barriers that influence a woman’s decision to breastfeed are well documented, less is known how these barriers vary by the UK’s diverse population. As such, this study aimed to explore mothers’ experiences of breastfeeding and accessing breastfeeding services offered locally amongst a deprived and culturally diverse community. Methods A qualitative interpretive study comprising of 63 mothers (white British n = 8, Pakistani n = 13, Bangladeshi n = 10, black African n = 15 and Polish n = 17) who took part in single-sex focus groups, conducted in local community centres across the most deprived and ethnically diverse wards in Luton, UK. The focus groups were audio-recorded, transcribed and analysed thematically using Framework Analysis. Results The most common barriers to breastfeeding irrespective of ethnicity were perceptions surrounding pain and lack of milk. Confidence and motivation were found to be crucial facilitators of breastfeeding; whereby mothers felt that interventions should seek to reassure and support mothers not only during the early stages but throughout the breastfeeding journey. Mothers particularly valued the practical support provided by health care professions particularly surrounding positioning and attachment techniques. However, many mothers felt that the support from health care professionals was not always followed through. Conclusions The findings presented inform important recommendations for the design and implementation of future programs and interventions targeted at reducing breastfeeding inequalities. Interventions should focus on providing mothers practical support and reassurance not only during the early stages but throughout their breastfeeding journey. The findings also highlight the need for tailoring services to support diverse communities which acknowledge different traditional and familial practices.

scholarly journals Exploring the enablers and barriers to implementing the Medication Appropriateness Tool for Comorbid Health conditions during Dementia (MATCH-D) criteria in Australia: a qualitative study

BMJ Open ◽  
2017 ◽  
Vol 7 (8) ◽  
pp. e017906 ◽  
Author(s):  
Amy Theresa Page ◽  
Rhonda Marise Clifford ◽  
Kathleen Potter ◽  
Liza Seubert ◽  
Andrew J McLachlan ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Focus Groups ◽  
External Validation ◽  
Medication Use ◽  
Health Conditions ◽  
Educational Tool ◽  
People With Dementia ◽  
Potential Applications ◽  
Consensus Guidance ◽  
Medication Appropriateness

ObjectivesThe Medication Appropriateness Tool for Comorbid Health conditions in Dementia (MATCH-D) criteria provide expert consensus guidance about medication use for people with dementia. This study aimed to identify enablers and barriers to implementing the criteria in practice.SettingParticipants came from both rural and metropolitan communities in two Australian states.ParticipantsFocus groups were held with consumers, general practitioners, nurses and pharmacists. Outcomes: data were analysed thematically.ResultsNine focus groups were conducted. Fifty-five participants validated the content of MATCH-D, appraising them as providing patient-centred principles of care. Participants identified potential applications (including the use of MATCH-D as a discussion aid or educational tool for consumers about medicines) and suggested supporting resources.ConclusionParticipants provided insights into applying MATCH-D in practice and suggested resources to be included in an accompanying toolkit. These data provide external validation of MATCH-D and an empiric basis for their translation to practice. Following resource development, we plan to evaluate the feasibility and efficacy of implementation in practice.

scholarly journals A National Memory Clinic Survey to Assess Provision for People from Diverse Ethnic Backgrounds in England and Wales

2021 ◽  
Vol 18 (4) ◽  
pp. 1456
Author(s):  
Shovanne Brown ◽  
Gill Livingston ◽  
Naaheed Mukadam
Keyword(s):  
Linguistic Diversity ◽  
National Policy ◽  
Diagnostic Procedures ◽  
Assessment Tools ◽  
National Guidelines ◽  
England And Wales ◽  
Memory Problems ◽  
Minority Ethnic Groups ◽  
Memory Clinics ◽  
Minority Ethnic

English national guidelines regarding dementia assessment and management recommend consideration of cultural and linguistic diversity when assessing people with cognitive complaints. To date there has been no assessment of adherence to these guidelines. We aimed to assess whether current services provided in memory assessment services (MAS) adhere to national policy, in their approach to the assessment and management of individuals with memory problems from minority ethnic backgrounds. We sent a survey to 213 memory services in England and Wales. Twenty MAS from seven regions responded to the survey. We found that 80% (16) provided translated resources, 70% (14) used cognitive assessment tools that are culturally sensitive and appropriate, and 65% (13) showed good use of sufficiently skilled and knowledgeable interpreters. Communication barriers, particularly language, were raised as a potential obstacle to diagnosing minority ethnic patients. Memory clinics appear to reflect national policy for the assessment and management of memory problems in minority ethnic patients. However, only a minority of services responded and they may be more engaged in considering these populations. We need wider knowledge of practice to explore how guidelines support healthcare professional’s assessment of patients from minority ethnic groups in memory service diagnostic procedures.

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