Abstract
BackgroundCoping 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 the following elements: (1) email contact with a specialized dementia nurse, (2) online videos, and (3) e-bulletins containing information about behavior changes and how to manage them.ObjectiveThe aim of this study was to understand (1) family caregivers’ actual use of various elements of the online self-management support, (2) family caregivers’ evaluation and satisfaction with the various elements, and (3) nurses’ usage and evaluations of the online support through the tailored email contacts.MethodsA mixed methods design was used in this process evaluation, combining quantitative and qualitative methods including analyses of dementia nurses’ registration forms, the number of clicks on online videos and e-bulletins, evaluation questions answered by family caregivers in a survey questionnaire, semistructured interviews with family caregivers and nurses, and analysis of the content of the email contacts.ResultsThe actual use of various elements of the online self-management support by family caregivers varied: 78% (21/27) of family caregivers had an email contact with the specialist nurse, 80% (43/54) of family caregivers clicked on an online video, and 37% (30/81) clicked on an e-bulletin. Family caregivers showed positive evaluations and satisfaction. The tailor-made approach in the personal email contacts in particular was valued by the family caregivers. Nurses’ evaluations about providing self-management support online were mixed as it was a relatively new task for them.ConclusionsAn important insight is that not all participants made optimum use of the various elements of the intervention. Nurses also said that the email 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 to reduce cases where they are not used and to back them up appropriately with tailored (online) information and advice for their personal situations.
Highlights
BackgroundFamily caregivers of people with dementia often face many challenges in everyday life while caring for their relative [1], most prominently regarding changes in behavior of the person with dementia [2,3]
We present a process evaluation of an online self-management support intervention addressing behavioral changes in dementia
The collected quantitative and qualitative data are categorized based on the 3 different elements of the intervention: email contacts with nurses, online videos, and e-bulletins
Summary
Caregivers of people with dementia often face many challenges in everyday life while caring for their relative [1], most prominently regarding changes in behavior of the person with dementia [2,3]. Coping with behavioral changes is a daily challenge for family caregivers in all phases of dementia [6]. These days, the term self-management is widely used when referring to managing consequences of a disease in daily life. In dementia care, the person often becomes increasingly dependent on support from family caregivers This is stressful for family caregivers, especially when coping with behavioral changes [5,6]. One nurse said that she noticed that she was being asked questions about case management, for instance about coordinating care for the relative
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