Involving people with dementia and their carers in dementia education for undergraduate healthcare professionals: a qualitative study of motivation to participate and experience

ABSTRACTBackground:There is a need to improve dementia education to prepare future generations of healthcare professionals to deal with the increasing challenges they will face. Time for Dementia is an innovative undergraduate education program for medical, nursing, and paramedic students in the south of England. Success of the program is dependent upon the participation of families (people with dementia and their carers). This qualitative study seeks to explore the motivation and experiences of the families taking part in the program.Methods:A topic guide was developed to understand factors influencing motivation and retention. A purposeful sample of participant families, who had at least 12 months of involvement in the program, were selected from a cohort of 282 families and were invited to take part in an in-depth qualitative interview. Interviews were audio recorded, transcribed verbatim, and analyzed using thematic analysis. This was subsequently refined in an on-going process of analysis aided by the use of Nvivo 11. Interviewing stopped when thematic saturation was reached.Results:Eighteen families took part in an in-depth qualitative interviews. Four themes were identified from the analysis. These themes were motivators, value to family, value to the person with dementia, and student factors.Conclusions:This study identifies underpinning factors that motivate families to join dementia education programs and the impact of such programs upon them. We found that engagement in such programs can have therapeutic benefits to participants, and do not cause harm. These findings can be used to strengthen recruitment and enhance family involvement in similar programs.

Download Full-text

A qualitative evaluation of the effect of a longitudinal dementia education programme on healthcare student knowledge and attitudes

Age and Ageing ◽

10.1093/ageing/afaa182 ◽

2020 ◽

Vol 49 (6) ◽

pp. 1080-1086

Author(s):

Stephanie Daley ◽

Yvonne Feeney ◽

Wendy Grosvenor ◽

Molly Hebditch ◽

Leila Morley ◽

...

Keyword(s):

Qualitative Study ◽

Qualitative Interviews ◽

Student Experience ◽

Qualitative Evaluation ◽

Education Programme ◽

Long Term Conditions ◽

Healthcare Students ◽

People With Dementia ◽

Set Up ◽

Dementia Education

Abstract Background and objectives There is a need to ensure that the future healthcare workforce has the necessary knowledge and skills to deliver high quality compassionate care to the increasing number of people with dementia. Our programme has been set up to address this challenge. In the programme, undergraduate healthcare students (nursing, medical and paramedic) visit a family (person with dementia and their carer) in pairs over a 2-year period. This qualitative study sought to understand the student experience of the programme. Methods Participants were undergraduate healthcare students who were undertaking our programme at two universities. We sampled for variation in the student participants in order to generate a framework for understanding the student experience of the programme. Students were invited to take part in the qualitative study, and written consent was obtained. Interviews and focus group transcripts were analysed using thematic analysis. Results Thirty-nine (nursing, medical and paramedic) student participants took part in individual in-depth qualitative interviews and 38 took part in five focus groups. Four key themes were identified from the analysis; relational learning, insight and understanding, challenging attitudes and enhanced dementia practice. Discussion Student experience of our programme was shown to be positive. The relationship between the students and family was most impactful in supporting student learning, and the subsequent improvement in knowledge, attitudes and practice. Our model of undergraduate dementia education has applicability for other long-term conditions.

Download Full-text

The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph19010519 ◽

2022 ◽

Vol 19 (1) ◽

pp. 519

Author(s):

Hanneke J. A. Smaling ◽

Bram Tilburgs ◽

Wilco P. Achterberg ◽

Mandy Visser

Keyword(s):

Qualitative Study ◽

Home Care ◽

Healthcare Professionals ◽

Community Dwelling ◽

Family Carers ◽

Term Care ◽

Social Distancing ◽

People With Dementia ◽

The Social ◽

The Impact

Social distancing measures imposed because of the COVID-19 pandemic presented challenges to the health and wellbeing of people with dementia, family carers, and healthcare professionals. This study investigated the impact of these measures on all involved in the care for people with dementia. For this qualitative study, 20 family carers and 20 healthcare professionals from home care and long-term care (LTC) participated in a semi-structured interview. Interviews were analysed using an inductive thematic analysis approach. For people with dementia, the social distancing measures resulted in a deterioration of physical health. The impact on their emotional state and behaviour depended on the stage of dementia. Family carers experienced difficulty coping with visiting restrictions, anxiety regarding safety, and changes in carer burden. Healthcare professionals had an increased workload, and felt guilty about adhering to restrictive measures. Differences between home care and LTC were reported (i.e., societal initiatives focussed on LTC, scarcity of activities for community-dwelling people with dementia, use of personal protective equipment more intrusive for home care). The social distancing measures had a negative impact on persons with dementia, their family carers, and healthcare professionals. More attention is needed for community-dwelling people with dementia and family carers in times of social isolation.

Download Full-text

Users’ perceptions about receiving personalized depression risk information: findings from a qualitative study

BMC Psychiatry ◽

10.1186/s12888-021-03590-8 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Heidi Eccles ◽

Doaa Nadouri ◽

Molly Nannarone ◽

Bonnie Lashewicz ◽

Norbert Schmitz ◽

...

Keyword(s):

Mental Health ◽

Qualitative Study ◽

Risk Communication ◽

Risk Score ◽

Controlled Trial ◽

Qualitative Interviews ◽

Risk Information ◽

Depression Risk ◽

Communication Program ◽

The Impact

Abstract Objectives To understand users’ perceptions about receiving their personalized depression risk score and to gain an understanding about how to improve the efficiency of risk communication from the user perspective. Methods A qualitative study embedded in a randomized controlled trial (RCT) on evaluating the impact of providing personalized depression risk information on psychological harms and benefits. The participants (20 males and 20 females) were randomly selected from the intervention arm of the RCT after the 12-month assessment. The qualitative interviews were conducted through telephone, audio recorded and transcribed verbatim. We conducted a content analysis to describe the content and contextual meaning of data collected from participants. Results The first theme explained the motivation for receiving a risk score. Most participants chose to receive their personalised depression risk score with the goal of improving their self-awareness. The results revealed three sub-themes surrounding perceptions and implication of receiving their risk score: positive, negative, and neutral. Most participants found that receiving their score was positive because it improved their awareness of their mental health, but some participants could see that some people would have negative feelings when getting the score causing them to be more likely to get depression. The final theme focussed on improvements including: the best delivery methods, having resources and strategies, and targeting younger people. Conclusion The most significant motivation for, and benefit of receiving one’s personalized depression risk score was improved awareness of one’s mental health. A comprehensive risk communication program may improve the uptake and maximize the impact on behavior changes and risk reduction.

Download Full-text

‘Unpacking’ pathways to lymphoma and myeloma diagnosis: Do experiences align with the Model of Pathways to Treatment? Findings from a UK qualitative study with patients and relatives

BMJ Open ◽

10.1136/bmjopen-2019-034244 ◽

2020 ◽

Vol 10 (2) ◽

pp. e034244

Author(s):

Debra Howell ◽

Ruth Hart ◽

Alexandra Smith ◽

Una Macleod ◽

Russell Patmore ◽

...

Keyword(s):

Qualitative Study ◽

Information Seeking ◽

Help Seeking ◽

Healthcare Professionals ◽

Diagnostic Delay ◽

Population Based ◽

Qualitative Description ◽

Linear Sequence ◽

Time To Diagnosis ◽

The Impact

ObjectivesTo explore alignment of experiences before lymphoma and myeloma diagnosis with the appraisal, help seeking and diagnostic intervals in the Model of Pathways to Treatment (MPT).DesignA qualitative study using in-depth semistructured interviews with patients and relatives. Interviews were transcribed verbatim, anonymised and analysed using qualitative description.SettingA UK population-based haematological malignancy patient cohort.ParticipantsFifty-five patients (35 lymphoma, 20 myeloma: diagnosed 2014–2016) and 28 relatives participated, within around a year of the patient’s diagnosis. Patients were selected from those in the cohort who had returned a questionnaire about their symptoms and help seeking, and consented to contact for further research. Sampling was purposive, to achieve maximum variation in age, sex and time to diagnosis.ResultsParticipants described time from symptom onset to diagnosis as ranging from several weeks to years. Pathways largely aligned with MPT components and help seeking could lead to the rapid investigations and identification of abnormalities. However, symptoms could be vague and/or inadvertently interpreted as other conditions, which if perpetuated, could cause diagnostic delay. The latter was associated with chaotic pathways, with activities rarely occurring only once or in a linear sequence. Rather, intermittent or ongoing processes were described, moving forward and backwards through intervals. This is ‘unpacked’ within five themes: (1) appraisal and reappraisal; (2) patient-initiated self-management/treatment; (3) initial help seeking; (4) re-presentation; and (5) patient-initiated actions, decisions and emotions during re-presentation. Within these themes, various healthcare professionals were consulted, often many times, as symptoms persisted/progressed. Input from family/friends was described as substantial, as was the extent to which information seeking occurred.ConclusionLymphoma and myeloma pathways align with the MPT, but do not fully capture the repetition and complexity described by participants. Time to diagnosis was often prolonged, despite the best efforts of patients, relatives and healthcare professionals. The impact of National Health Service England’s Multi-diagnostic Disciplinary Centres on time to haematological cancer diagnosis remains to be seen.

Download Full-text

Swimming for dementia: An exploratory qualitative study: Innovative practice

Dementia ◽

10.1177/1471301218768372 ◽

2018 ◽

Vol 18 (2) ◽

pp. 776-784 ◽

Cited By ~ 2

Author(s):

Tanya Hobden ◽

Mary Swallow ◽

Charlotte Beer ◽

Tom Dening

Keyword(s):

Qualitative Study ◽

Physical Fitness ◽

Thematic Analysis ◽

Local Group ◽

Weight Bearing ◽

Structured Interviews ◽

Innovative Practice ◽

People With Dementia ◽

The Impact

Swimming is a non-weight bearing form of exercise that can be enjoyable and promote physical fitness. This qualitative study investigated a local group established as part of a national dementia swimming initiative. Semi-structured interviews with people with dementia (N = 4), carers or companions (N = 4) and the organisers and facilitators of the group (N = 6) were analysed using thematic analysis. This revealed four main themes: (1) the pleasure of swimming and its benefits as a form of exercise and for building confidence and empowering participants, (2) the importance of insight and empathy in creating a safe and secure experience, (3) the impact of dementia and (4) how participants valued being part of a group ‘all in the same boat’. ‘Dementia friendly swimming’ appears to be a valuable form of exercise, but it requires considerable preparation and support to make it happen.

Download Full-text

Using and implementing care bundles for patients with acute admission for COPD: qualitative study of healthcare professionals’ experience in four hospitals in England

BMJ Open Respiratory Research ◽

10.1136/bmjresp-2019-000515 ◽

2020 ◽

Vol 7 (1) ◽

pp. e000515

Author(s):

Ali Shaw ◽

Katherine Morton ◽

Anna King ◽

Melanie Chalder ◽

James Calvert ◽

...

Keyword(s):

Qualitative Study ◽

Patient Care ◽

Financial Incentives ◽

Healthcare Professionals ◽

Care Delivery ◽

Care Pathway ◽

Chronic Obstructive ◽

Process Of Care ◽

Care Bundles ◽

The Impact

BackgroundCare bundles are sets of evidence-based interventions to improve quality of hospital care at admission and discharge. Within a wider multi-method evaluation of care bundles for adults with an emergency admission for acute exacerbations of chronic obstructive pulmonary disease, a qualitative study was conducted. The aim was to evaluate how bundles were used, and healthcare professionals’ experiences of the impact of bundles on the process of care delivery.MethodsWithin the wider evaluation, four acute hospitals that were using COPD care bundles were purposefully sampled for geographical variation. Qualitative data were gathered through non-participant observation of patient care and interviews with healthcare professionals, patients and carers. This paper reports a thematic analysis of data from observation and interviews with professionals.ResultsHealthcare professionals generally experienced care bundles as positive for standardising working practices and patient care, valuing how bundles could support a clear care pathway for patients, enable transitions between settings and identify postdischarge support required by patients. Successful use of bundles was perceived as more likely with the presence of either (or both) a clinical champion for bundles and system-based initiatives such as financial incentives, within a local culture of quality improvement. Challenges in accurately diagnosing COPD hampered bundle use, including delivery of bundles to those subsequently considered ineligible, or missed opportunities to deliver admission bundles to those with COPD.ConclusionCare bundles shape admission and discharge care processes for patients with COPD, from the perspective of staff involved in their delivery. However, different organisational, staff and clinical factors aid or hinder bundle use in an acute hospital context, suggesting potentially resolvable reasons for variable implementation of bundles. Finally, bundles may enhance staff experience of care delivery, even if the impact on patient outcomes remains uncertain.

Download Full-text

The emergence of personal growth amongst healthcare professionals who care for dying children

Palliative & Supportive Care ◽

10.1017/s1478951517000396 ◽

2017 ◽

Vol 16 (3) ◽

pp. 298-307 ◽

Cited By ~ 5

Author(s):

Laura Beaune ◽

Barbara Muskat ◽

Samantha J. Anthony

Keyword(s):

Compassion Fatigue ◽

Personal Growth ◽

Healthcare Professionals ◽

Qualitative Interviews ◽

Secondary Analysis ◽

Well Being ◽

Three Dimensions ◽

Positive Effects ◽

Dying Children ◽

The Impact

ABSTRACTObjective:Compassion fatigue, burnout, and vicarious traumatization are prominent topics in the current literature on the impact of the rewarding but challenging work of healthcare professionals who care for patients with life-limiting illnesses. The positive effects of caregiving constitute a newly emerging outcome that has been relatively unexplored in the pediatric literature, and yet they may play an important role in contributing to the satisfaction and well-being of the healthcare professionals who care for children who have a life-limiting illness.Method:This paper reports the results of a secondary analysis of qualitative interview transcripts that explored the experiences of hospital-based pediatric healthcare providers caring for children with varied life-limiting illnesses. In-depth qualitative interviews were conducted with 25 healthcare professionals (9 social workers, 8 nurses, and 8 physicians). The majority of participants were women (80%), with an age range between 20 and 60 years, and most (84%) had the experience of caring for more than 15 dying children. Thematic analysis was conducted using interpretive description and constant comparison.Results:Every healthcare professional interviewed experienced personal growth as a result of their providing care for dying children. Three dimensions of personal growth were most consistently reported: (1) new or altered life perspectives, (2) enhanced personal resources, and (3) benevolence.Significance of results:A deeper understanding of the phenomenon of personal growth could help healthcare organizations to implement innovative approaches that would counterbalance compassion fatigue, and thereby enhance both healthcare provider well-being and child and family outcomes.

Download Full-text

Improving medicines management for people with dementia in primary care: a qualitative study of healthcare professionals to develop a theory-informed intervention

BMC Health Services Research ◽

10.1186/s12913-020-4971-7 ◽

2020 ◽

Vol 20 (1) ◽

Cited By ~ 3

Author(s):

Heather E. Barry ◽

Laura E. Bedford ◽

Máiréad McGrattan ◽

Cristín Ryan ◽

A. Peter Passmore ◽

...

Keyword(s):

Primary Care ◽

Qualitative Study ◽

Healthcare Professionals ◽

Medicines Management ◽

People With Dementia

Download Full-text

Design and evaluation protocol for ‘DEALTS 2’: a simulation-based dementia education intervention for acute care settings

International Psychogeriatrics ◽

10.1017/s1041610218002193 ◽

2019 ◽

Vol 32 (12) ◽

pp. 1439-1448 ◽

Cited By ~ 2

Author(s):

Michelle Heward ◽

Michele Board ◽

Ashley Spriggs ◽

Jane Murphy

Keyword(s):

Acute Care ◽

Care Delivery ◽

Intervention Development ◽

Practice Change ◽

Train The Trainer ◽

People With Dementia ◽

Simulation Based ◽

Acute Care Settings ◽

The Impact ◽

Dementia Education

ABSTRACTBackground:There is a paucity of simulation-based dementia education programmes for acute care settings that support the development of interpersonal skills pertinent to good care. Moreover, few studies measure the effectiveness of such programmes by evaluating the persistence of practice change beyond the immediate timeframe of the workshops. We were commissioned by Health Education England (HEE) to develop and evaluate ‘DEALTS 2’, a national simulation-based education toolkit informed by the Humanisation Values Framework, developed at Bournemouth University and based on an experiential learning approach to facilitate positive impacts on practice. This paper describes the process of developing DEALTS 2 and the protocol for evaluating the impact of this intervention on practice across England.Methods:Intervention development: Following an initial scoping exercise to explore the barriers and enablers of delivering the original DEALTS programme, we developed, piloted, and rolled out DEALTS 2 across England through a Train the Trainer (TTT) model. Key stakeholders were asked to critically feedback during the development process.Evaluation design:Mixed methods approach underpinned by Kirkpatrick Model for evaluating effectiveness of training; assessing reaction, learning, behaviour, and results. Evaluation forms and telephone interviews (quantitative and qualitative) with trainers that attended TTT workshops (n = 196) and, once implemented in individual Trusts, the staff that the trainers train.Conclusions:Evaluation of implementation and impact on care delivery for people with dementia will provide evidence of effectiveness. This will support the future development of simulation-based education programmes, amidst the current complexity of pressure in resource limited healthcare settings.

Download Full-text