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

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)

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

10.2196/13001 ◽  
2020 ◽  
Vol 22 (2) ◽  
pp. e13001 ◽  
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

scholarly journals 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)

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)

scholarly journals Process Evaluation of Nurse-Led Online Self-Management Support for Family Caregivers to Deal With Behavior Changes of a Relative With Dementia (Part 1): Mixed Methods Study (Preprint)

2018 ◽  
Author(s):  
Judith G Huis in het Veld ◽  
Iris F M van Asch ◽  
Bernadette M Willemse ◽  
Paul-Jeroen Verkade ◽  
Anne Margriet Pot ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Family Caregivers ◽  
Process Evaluation ◽  
Behavioral Changes ◽  
Self Management ◽  
Behavior Changes ◽  
Online Information ◽  
Management Support ◽  
Online Videos ◽  
Actual Use

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 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. OBJECTIVE The 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. METHODS A 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. RESULTS The 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. CONCLUSIONS An 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.

scholarly journals Process Evaluation of Nurse-Led Online Self-Management Support for Family Caregivers to Deal With Behavior Changes of a Relative With Dementia (Part 1): Mixed Methods Study

10.2196/13002 ◽  
2019 ◽  
Vol 21 (10) ◽  
pp. e13002 ◽  
Author(s):  
Judith G Huis in het Veld ◽  
Iris F M van Asch ◽  
Bernadette M Willemse ◽  
Paul-Jeroen Verkade ◽  
Anne Margriet Pot ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Family Caregivers ◽  
Process Evaluation ◽  
Behavioral Changes ◽  
Self Management ◽  
Behavior Changes ◽  
Online Information ◽  
Management Support ◽  
Online Videos ◽  
Actual Use

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.

The effects of a multi-component dyadic intervention on the psychological distress of family caregivers providing care to people with dementia: a randomized controlled trial

2015 ◽  
Vol 27 (12) ◽  
pp. 2031-2044 ◽  
Author(s):  
Anna-Eva Prick ◽  
Jacomine de Lange ◽  
Jos Twisk ◽  
Anne Margriet Pot
Keyword(s):  
Randomized Controlled Trial ◽  
Physical Exercise ◽  
Family Caregivers ◽  
Controlled Trial ◽  
Skills Training ◽  
Community Dwelling ◽  
Randomized Controlled ◽  
People With Dementia ◽  
The Us ◽  
Person With Dementia

ABSTRACTBackground:Earlier research showed that multi-component dyadic interventions – including a combination of intervention strategies and addressing both the person with dementia and caregiver – have a beneficial impact on the mental and physical health of people with dementia and their family caregivers. A randomized controlled trial (RCT) of a multi-component dyadic intervention, which is a translated and adapted version of an intervention that has been shown to be effective in the US by Teri et al. (2003), was performed. The effects on caregivers’ mood (primary outcome), burden, general health, and salivary cortisol levels (secondary outcomes) were studied.Methods:Community-dwelling people with dementia and their family caregivers (N = 111 dyads) were randomly assigned. The experimental group received eight home visits during three months, combining physical exercise and support (psycho-education, communication skills training, and planning of pleasant activities). Both the physical exercise and support component were directed at both the person with dementia and the caregiver. The comparison group received monthly information bulletins and phone calls. There were three measurements at baseline (prior to the intervention), at three months, and at six months into the intervention. Data were analyzed with Generalized Estimating Equations (GEE) based on an intention-to-treat analysis of all available data.Results:All analyses showed no benefits of the intervention over time on any of the outcomes.Conclusion:The negative results might be explained by the translation and adaptation of the intervention that has been shown to be effective in the US: the intervention was shortened and did not include cognitive reframing. However, only the health effects on people with dementia and not on caregivers were studied in the US. Several other factors might also have played a role, which are important for future studies to take into account. These are: the usual health care in the country or region of implementation; the wishes and needs of participants for specific intervention components; the room for improvement regarding these components; the inclusion of positive outcome measures, such as pleasure, and the quality of the relationship.

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