Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Nov 30, 2018
Open Peer Review Period: Dec 5, 2018 - Jan 30, 2019
Date Accepted: Jul 5, 2019
(closed for review but you can still tweet)
Process evaluation of online self-management support for family caregivers to deal with behavior changes of a relative with dementia
ABSTRACT
Background:
Coping with behavioral changes is a daily challenge for family caregivers in all phases of dementia and assistance is needed for it. An online self-management support intervention was therefore developed and conducted involving various elements: a) e-mail contacts with a specialized dementia nurse, b) online videos, and c) e-bulletins containing information about behavior changes and how to manage them.
Objective:
The objective of this process evaluation was to gain an understanding of a) family caregivers’ actual use of various elements of the online self-management support, b) family caregivers’ evaluation and satisfaction with the various elements, and c) nurses’ evaluations of the online support through the tailored e-mail contacts.
Methods:
A mixed-method design was used in this process evaluation, combining quantitative and qualitative methods including analyses of dementia nurses’ registration forms, the numbers of clicks on online videos and e-bulletins, evaluation questions filled out by family caregivers in a survey questionnaire, semi-structured interviews with family caregivers and nurses, and analysis of the content of the e-mail contacts.
Results:
The actual use of the various elements of the online self-management support by family caregivers varied: 78% of family caregivers had e-mail contact with the specialist nurse, 80% of family caregivers clicked on an online video and 37% clicked on an e-bulletin. Family caregivers showed positive evaluations and satisfaction. The tailor-made approach in the personal e-mail contacts in particular was valued by the family caregivers. Nurses’ evaluations about providing self-management support online were mixed as it is a relatively new task for them.
Conclusions:
An important insight is that not all participants made optimum use of the various elements of the intervention. Nurses also said that the e-mail contacts were more often used to express feelings about coping with behavioral changes. More research is needed to investigate the reasons why people accept, adopt and adhere to online interventions in order to reduce cases where they are not used and to back them up appropriately with tailored (online) information and advice for their personal situations.
Citation
Per the author's request the PDF is not available.
Copyright
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