Researchers and developers of digital psychosocial interventions for people with dementia and family carers should consult end users on the mode of delivery of their interventions to ensure its usability.
Explanation and Examples
Consensus exists that consultations with people with dementia and family carers should be carried out when developing digital complex interventions for these populations. However, with different platforms that are available to researchers and developers, it is especially important to ensure that the mode of delivery of these technologies (e.g., smartphone application, website, text messages etc.) is appropriate and useful for people who are going to use the intervention. Qualitative consultations in the form of interviews and focus groups with end users can be especially useful for this. We conducted focus groups with 17 people with dementia and family carers to establish their needs and wishes regarding the digital adaptation of an existing face-to-face intervention. Contrary to our expectations, we discovered that participants preferred a website intervention if they were going to use the intervention for a limited amount of time, for example less than four weeks. Smartphone applications were preferred if they were going to be used for a longer period. Consultations with end users are recommended to establish not just the intervention content but also its mode of delivery.
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Better research using high-quality study designs is needed to develop, implement and evaluate complex palliative care interventions (targeting whole-system change) for people with dementia living and dying at home.
Our systematic review found that the existing evidence base remains insufficient and is generally too weak to robustly assess the effects of palliative care interventions for people with dementia living at home.
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When implementing Advance care planning (ACP) as a complex health technology in a complex setting such as a nursing home, multiple levels should be targeted, including management, nurses, care staff, volunteers, visiting or residing physicians, families, cleaning or other staff.
The implementation process will have a higher chance of succeeding when multiple levels are targeted within the nursing home. Colleagues in the nursing home can help each other to implement the intervention, creating a positive and open environment to learn and develop new skills and deliver the best care possible. In this way the intervention can produce a shift in working culture and attitudes and deliver sustainable change.
The ACP+ intervention targeted not only the (head) nurses, but also other care staff and cleaning, kitchen and maintenance staff. Also, engagement of the management was required for participation in the trial. A few highly motivated people were extensively trained in conducting ACP conversations and this knowledge was past onwards to colleagues via internal training sessions. In this way the whole nursing home was involved in the intervention, leading to greater participation of all nursing home employees.
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