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Task-shifted approaches to postdiagnostic dementia support: a qualitative study exploring professional views and experiences.

ABSTRACT: OBJECTIVES:To explore the views of commissioners, service development leads, service managers and senior staff in selected dementia services on increasing the role of primary care in postdiagnostic support for people with dementia. DESIGN:Qualitative semi-structured telephone interviews and a focus group. SETTING:Participants were drawn from National Health Service (NHS) Clinical Commissioning Groups, social care commissioning and a range of dementia services across primary care, secondary mental healthcare, social care and the third sector. All participants were based in England or Wales. PARTICIPANTS:61 professionals, comprising 25 commissioners or service development leads; 25 service managers; and 11 team leads or senior staff. RESULTS:Participants had varied views on whether a primary care-based approach for postdiagnostic support for people with dementia and their families was appropriate, achievable and/or desirable. Potential benefits of a task-shifted approach were continuity and a more holistic approach to care; familiarity for both patients and staff; and reduction of stigma. Key challenges included the capacity, ability and inclination of primary care to deliver postdiagnostic support for people with dementia and their families. We discovered a number of conceptual challenges to implementing a task-shifted and task-shared approach, including uncertainties around the nature of postdiagnostic support, the definition of primary care and identification of tasks that could be shifted to primary care. CONCLUSIONS:Our data highlight the concerns of key professional staff around greater involvement of primary care in postdiagnostic support for dementia. Further research is needed to achieve a shared understanding and consensus over what postdiagnostic support means in the context of dementia. We will be undertaking such research in the next phase of our programme.

SUBMITTER: Wheatley A

PROVIDER: S-EPMC7507844 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Task-shifted approaches to postdiagnostic dementia support: a qualitative study exploring professional views and experiences.

Wheatley Alison A Bamford Claire C Brunskill Greta G Harrison Dening Karen K Allan Louise L Rait Greta G Robinson Louise L

BMJ open 20200921 9

<h4>Objectives</h4>To explore the views of commissioners, service development leads, service managers and senior staff in selected dementia services on increasing the role of primary care in postdiagnostic support for people with dementia.<h4>Design</h4>Qualitative semi-structured telephone interviews and a focus group.<h4>Setting</h4>Participants were drawn from National Health Service (NHS) Clinical Commissioning Groups, social care commissioning and a range of dementia services across primary ...[more]

PMID: 32958494

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Project description:BACKGROUND: Developments in enzyme replacement therapy have kindled discussions on adding Pompe disease, characterized by progressive muscle weakness and wasting, to neonatal screening. Pompe disease does not fit traditional screening criteria as it is a broad-spectrum phenotype disorder that may occur in lethal form in early infancy or manifest in less severe forms from infancy to late adulthood. Current screening tests cannot differentiate between these forms. Normally, expanding screening is discussed among experts in advisory bodies. While advisory reports usually mention the procedures and outcome of deliberations, little is known of the importance attached to different arguments and the actual weighing processes involved. In this research we aim to explore the views of a wide range of relevant professionals to gain more insight into the process of weighing pros and cons of neonatal screening for Pompe disease, as an example of the dilemmas involved in screening for broad-spectrum phenotype disorders. METHODS: We conducted 24 semi-structured interviews with medical, lab, insurance and screening professionals, and executive staff of patient organisations. They were asked about their first reaction to neonatal screening for Pompe disease, after which benefits and harms and requirements for screening were explored in more detail. RESULTS: Advantages included health gain by timely intervention, avoiding a diagnostic quest, having a reproductive choice and gaining more knowledge about the natural course and treatment. Being prepared was mentioned as an advantage for the later manifesting cases. Disadvantages included treatment costs and uncertainties about its effect, the timing of treatment in later manifesting cases, the psychological burden for the patient-in-waiting and the family. Also the downsides of having prior knowledge as well as having to consider a reproductive option were mentioned as disadvantages. CONCLUSION: When weighing pros and cons, interviewees attach different importance to different arguments, based on personal and professional views. Professionals expect benefits from neonatal screening for Pompe disease, especially for early-onset cases. Some interviewees valued screening in later manifesting cases as well, while stressing the need for adequate support of pre-symptomatic patients and their families. Others considered the psychological burden and uncertainties regarding treatment as reasons not to screen.

Project description:BackgroundProviding a timely and accurate diagnosis of dementia and delivering appropriate support following a diagnosis are essential to allow individuals and their families to plan for the future. Recent studies suggest that provision of diagnosis and post-diagnosis support is suboptimal. This study explored geriatricians' views about strategies to improve quality of care across these domains.MethodsAn anonymous online survey of geriatricians and advanced trainees in one Australian state was conducted. An Expert Advisory Group of geriatricians, behavioural scientists and consumers proposed strategies to improve quality of care in relation to diagnosis and post-diagnosis support for people with dementia, which formed the survey items. Potential strategies were guided by, but not limited to, dementia and chronic care guidelines. Participants were asked the extent to which they agreed that implementing each of the proposed strategies would improve the quality of dementia care.ResultsOf 59 participants (response rate 42%), all agreed that improving accessibility of geriatricians would improve the accuracy and timeliness of diagnosis. Over 90% were supportive of strategies to improve capacity of general practitioners to accurately diagnose dementia. Between 97-100% agreed that information provided following diagnosis should encompass symptom progression, treatments, psychological supports, and advance care planning. Just over two-thirds thought that life expectancy should be discussed at this time. There were high levels of support for strategies already included in existing dementia care guidelines, however geriatricians also agreed with a range of possible strategies not currently included in guidelines.ConclusionsGeriatricians perceive that timeliness and accuracy of dementia diagnosis may be improved by increasing access to geriatricians and training general practitioners in diagnosing dementia. They also believe it is appropriate to provide information at the time of diagnosis across a comprehensive range of areas, including potentially sensitive topics such as advance care planning. Future studies should explore the views of other groups of health care providers and consumers about these approaches. The strategies proposed should be considered for inclusion in future dementia care guidelines.

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Task-shifted approaches to postdiagnostic dementia support: a qualitative study exploring professional views and experiences.

Publications

Task-shifted approaches to postdiagnostic dementia support: a qualitative study exploring professional views and experiences.

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