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.

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 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 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 Self-management-support in dementia care: A mixed methods study among nursing staff

Dementia ◽  
2016 ◽  
Vol 16 (8) ◽  
pp. 1032-1044 ◽  
Author(s):  
Renate Verkaik ◽  
Paulien van Antwerpen-Hoogenraad ◽  
Anke de Veer ◽  
Anneke Francke ◽  
Judith Huis in het Veld
Keyword(s):  
Mixed Methods ◽  
Home Care ◽  
Family Caregivers ◽  
Nursing Staff ◽  
Elderly Care ◽  
Dementia Care ◽  
Self Management ◽  
Practice Research ◽  
Management Support ◽  
People With Dementia

Background Self-management in patients and family caregivers confronted with dementia is not self-evident. Self-management skills may be limited because of the progressive cognitive decline of the patient and because family caregivers are often also very aged. Self-management support by nursing staff is therefore of paramount importance. Objectives To gain insight into how nursing staff perceive their self-management support tasks, and how they put them into practice. Research questions are: ‘What are the opinions and experiences of Dutch nursing staff working in home care or residential elderly care regarding self-management support for people with dementia and their family caregivers?' and ‘Do nursing staff feel sufficiently trained and skilled for self-management support?’. Methods A mixed methods approach was used, combining cross-sectional quantitative survey data from 206 Dutch nursing professionals with qualitative interviews among 12 nursing staff working in home care or residential elderly care in The Netherlands. Results Nursing staff working in home care experienced self-management support of people with dementia as a part of their job and as an attractive task. They consider ‘helping people with dementia to maintain control over their lives by involving them in decisions in daily care’ the essence of self-management support. Nursing staff saw family caregivers as their main partners in providing self-management support to the patient. They were less aware that family caregivers themselves might also need self-management support. Nursing staff often felt insufficiently trained to give adequate self-management support. RN’s and CNA’s did not differ in their opinions, experiences and training needs. Conclusions Nursing staff in home care do consider self-management support an important and attractive task in dementia care. Their skills for providing self-management support to patients with dementia and family caregivers need improvement. Recommendations Nursing staff need sufficient training to enable the proper provision of self-management support for people with dementia. More attention should also be given to the support of self-management for family caregivers.

Self-Management Support and eHealth When Managing Changes in Behavior and Mood of a Relative With Dementia: An Asynchronous Online Focus Group Study of Family Caregivers' Needs

2018 ◽  
Vol 11 (3) ◽  
pp. 151-159 ◽  
Author(s):  
Judith G. Huis in het Veld ◽  
Renate Verkaik ◽  
Berno van Meijel ◽  
Paul-Jeroen Verkade ◽  
Wendy Werkman ◽  
...  
Keyword(s):  
Focus Group ◽  
Family Caregivers ◽  
Self Management ◽  
Management Support ◽  
Focus Group Study

Teaching self-management support in Dutch Bachelor of Nursing education: A mixed methods study of the curriculum

2018 ◽  
Vol 68 ◽  
pp. 146-152 ◽  
Author(s):  
Susanne M. van Hooft ◽  
Yvonne N. Becqué ◽  
Jolanda Dwarswaard ◽  
AnneLoes van Staa ◽  
Roland Bal
Keyword(s):  
Nursing Education ◽  
Mixed Methods ◽  
Mixed Methods Study ◽  
Self Management ◽  
Management Support
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