Online Self-Management Support for Family Caregivers to Help Them Manage Behavior Changes in Their Relative With Dementia: Study Protocol for a Randomized Controlled Trial and a Process Evaluation (Preprint)

Mapping Intimacies ◽

10.2196/preprints.8365 ◽

2017 ◽

Author(s):

Judith G Huis in het Veld ◽

Bernadette M Willemse ◽

Iris FM van Asch ◽

Rob BM Groot Zwaaftink ◽

Paul-Jeroen Verkade ◽

...

Keyword(s):

Family Caregivers ◽

Controlled Trial ◽

Self Management ◽

Behavior Changes ◽

Management Support ◽

Support Intervention ◽

Randomized Controlled ◽

People With Dementia ◽

The Family ◽

Online Videos

BACKGROUND Online interventions are potentially effective ways to support family caregivers in the management of behavior changes in their relative with dementia. OBJECTIVE The objective of this paper is to present the design of a study evaluating and comparing 3 intervention arms for online self-management support. METHODS A randomized controlled trial (RCT) will be conducted with a total of 81 family caregivers of community-dwelling people with dementia in the Netherlands. Family caregivers will be randomly allocated to one of the following intervention arms: (1) a major self-management support intervention consisting of personal email contacts with a nurse specialized in dementia care, online videos, and electronic bulletins (e-bulletins); (2) a medium self-management support intervention consisting of only online videos and e-bulletins; and (3) a minor self-management support intervention with only e-bulletins. The primary outcome is the self-efficacy of the family caregiver. The secondary outcomes are the behavior problems of the person with dementia as reported by the family caregiver, and positive and negative aspects of the relationship. Background characteristics (eg, type of family relationship) will also be assessed. All data for the RCT will be collected via online questionnaires, administered before the intervention (T0), after 6 weeks (T1), and after 12 weeks (T2). Alongside the RCT, a process evaluation will be conducted, based on a number of evaluation questions and semi-open interviews with family caregivers. RESULTS Data collection will be completed in August 2017. Study results will be reported in early 2018. CONCLUSIONS The study will shed more light on the effect of online self-management support interventions and insights will be gained into whether a major intervention, consisting of personal email contacts with specialized nurses, videos, and e-bulletins, has more effect than smaller online interventions. This is relevant in an age with increasing numbers of people with dementia, growing pressure on family caregivers, more and more people using the Internet, and increasing healthcare costs. CLINICALTRIAL Nederlands Trial Registry (NTR): NTR6237; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6237 (Archived by WebCite at http://www.webcitation.org/6v0S4fxTC)

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Online Self-Management Support for Family Caregivers Dealing With Behavior Changes in Relatives With Dementia (Part 2): Randomized Controlled Trial

Journal of Medical Internet Research ◽

10.2196/13001 ◽

2020 ◽

Vol 22 (2) ◽

pp. e13001 ◽

Cited By ~ 2

Author(s):

Judith G Huis in het Veld ◽

Bernadette M Willemse ◽

Iris FM van Asch ◽

Rob BM Groot Zwaaftink ◽

Paul-Jeroen Verkade ◽

...

Keyword(s):

Family Caregivers ◽

Controlled Trial ◽

Self Management ◽

Behavior Changes ◽

Management Support ◽

Support Intervention ◽

People With Dementia ◽

Online Videos ◽

Person With Dementia

Background Online contacts with a health professional have the potential to support family caregivers of people with dementia. Objective The goal of the research was to study the effects of an online self-management support intervention in helping family caregivers deal with behavior changes of a relative with dementia. The intervention—involving among others personal email contacts with a dementia nurse—was compared with online interventions without these email contacts. Methods A randomized controlled trial was conducted with 81 family caregivers of people with dementia who live at home. Participants were randomly assigned to a (1) major self-management support intervention consisting of personal email contacts with a specialist dementia nurse, online videos, and e-bulletins; (2) medium intervention consisting only of online videos and e-bulletins; or (3) minor intervention consisting of only the e-bulletins. The primary outcome was family caregivers’ self-efficacy in dealing with behavior changes of the relative with dementia. Secondary outcomes were family caregivers’ reports of behavior problems in the people with dementia and the quality of the relationship between the family caregiver and the person with dementia. Measurements were performed at the baseline and at 6 (T1) and 12 weeks (T2) after the baseline. A mixed-model analysis was conducted to compare the outcomes of the 3 intervention arms. Results Family caregivers participating in the major intervention involving email contacts showed no statistically significant differences in self-efficacy after the intervention compared with the minor intervention involving only e-bulletins (difference –0.02, P=.99). In the adjusted analysis, the medium intervention (involving videos and e-bulletins) showed a negative trend over time (difference –4.21, P=.09) and at T1 (difference –4.71, P=.07) compared with the minor intervention involving only e-bulletins. No statistical differences were found between the intervention arms in terms of the reported behavior problems and the quality of the relationship between the family caregiver and the person with dementia. Conclusions The expectation that an online self-management support intervention involving email contacts would lead to positive effects and be more effective than online interventions without personal email contacts was not borne out. One explanation might be related to the fact that not all family caregivers who were assigned to that intervention actually made use of the opportunity for personal email contact. The online videos were also not always viewed. To obtain more definite conclusions, future research involving extra efforts to reach higher use rates is required. Trial Registration Netherlands Trial Registry NTR6237; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6237 (Archived by WebCite at http://www.webcitation.org/6v0S4fxTC) International Registered Report Identifier (IRRID) RR2-10.2196/resprot.8365

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Effects of online self-management support of family caregivers to deal with behavior changes of the relative with dementia: a randomized controlled trial (Preprint)

10.2196/preprints.13001 ◽

2018 ◽

Author(s):

Judith G Huis in het Veld ◽

Bernadette M Willemse ◽

Iris F M van Asch ◽

Rob B M Groot Zwaaftink ◽

Paul-Jeroen Verkade ◽

...

Keyword(s):

Family Caregivers ◽

Controlled Trial ◽

Self Management ◽

Behavior Changes ◽

Management Support ◽

Support Intervention ◽

People With Dementia ◽

Online Videos ◽

Person With Dementia ◽

E Mail

BACKGROUND Online contacts with a health professional have the potential to support family caregivers of people with dementia. OBJECTIVE To study the effects of an online self-management support intervention in helping family caregivers to deal with behavior changes of the relative with dementia. The intervention - involving among others personal e-mail contacts with a dementia nurse - was compared to online interventions without these e-mail contacts. METHODS A randomized controlled trial (RCT) was conducted with 81 family caregivers of people with dementia who live at home. Participants were randomly assigned to one of (1) a major self-management support intervention consisting of personal e-mail contacts with a specialist dementia nurse, online videos, and e-bulletins; or (2) a medium intervention consisting only of online videos and e-bulletins; or (3) a minor intervention consisting of only the e-bulletins. The primary outcome was family caregivers’ self-efficacy in dealing with behavior changes of the relative with dementia. Secondary outcomes were family caregivers’ reports of behavior problems in the people with dementia and the quality of the relationship between the family caregiver and the person with dementia. Measurements were performed at the baseline and at six (T1) and twelve weeks (T2) after the baseline. A mixed-model analysis was conducted to compare the outcomes of the three intervention arms. RESULTS Family caregivers participating in the major intervention involving e-mail contacts showed no statistically significant differences in self-efficacy after the intervention compared to the minor intervention involving only e-bulletins (difference -0.02, p-value 0.99). In the adjusted analysis, the medium intervention (involving videos and e-bulletins) showed a negative trend over time (difference -4.21, p=0.09) and at T1 (difference -4.71, p=0.07) compared to the minor intervention involving only e-bulletins. Neither were any statistical differences found between the intervention arms in terms of the reported behavior problems and the quality of the relationship between the family caregiver and the person with dementia. CONCLUSIONS The expectation that an online self-management support intervention involving e-mail contacts would lead to positive effects and be more effective than online interventions without personal e-mail contacts was not borne out. One explanation might be related to the fact that not all family caregivers who were assigned to that intervention actually made use of the opportunity for personal e-mail contact. The online videos were also not always viewed. To obtain more definite conclusions, future research involving extra efforts to reach higher usage rates is required. CLINICALTRIAL Netherlands Trial Registry (NTR): NTR6237; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6237 (Archived by WebCite at http://www.webcitation.org/6v0S4fxTC)

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