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Published in: Trials 1/2017

Open Access 01-12-2017 | Study protocol

Effectiveness of an online social support intervention for caregivers of people with dementia: the study protocol of a randomised controlled trial

Authors: Alieske E. H. Dam, Marjolein E. de Vugt, Martin P. J. van Boxtel, Frans R. J. Verhey

Published in: Trials | Issue 1/2017

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Abstract

Background

Caregivers of people with dementia (PwD) face burden, feelings of loneliness, and social isolation. Previous studies have shown promising effects of online e-health interventions. Using social media may facilitate support for dementia caregiver networks. In an iterative step-wise approach, a social support tool entitled “Inlife” was developed. This paper describes the design of a study evaluating the effects of Inlife and its process characteristics.

Methods

A mixed-method, randomised controlled trial with 122 caregivers of PwD will be conducted. Participants will be assigned to either the Inlife social support intervention or a waiting-list control group. After 16 weeks, the control group will obtain access to the Inlife environment. Data will be collected at baseline (T0) and at 8-week (T1), 16-week (T2) and 42-week follow up (T3). The 16-week follow-up assessment (T2) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. The primary outcomes include feelings of caregiver competence and perceived social support. The secondary outcomes include received support, feelings of loneliness, psychological complaints (e.g., anxiety, stress), and quality of life. A process evaluation, including semi-structured interviews, will be conducted to examine the internal and external validity of the intervention.

Discussion

Using a mixed-method design, our study will provide valuable insights into the usability, effectiveness, and factors related to implementation of the Inlife intervention. Our study results will indicate whether Inlife could be a valuable social support resource in future routine dementia care.

Trial registration

Dutch trial register, NTR6131. Registered on 20 October 2016.
Appendix
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Literature
2.
go back to reference Schulz R, Martire LM. Family caregiving of persons with dementia: prevalence, health effects, and support strategies. Am J Geriatr Psychiatry. 2004;12:240–9.CrossRefPubMed Schulz R, Martire LM. Family caregiving of persons with dementia: prevalence, health effects, and support strategies. Am J Geriatr Psychiatry. 2004;12:240–9.CrossRefPubMed
3.
go back to reference Droes RM, Chattat R, Diaz A, Gove D, Graff M, Murphy K, Verbeek H, Vernooij-Dassen M, Clare L, Johannessen A, et al. Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice. Aging Ment Health 2016:1–14. doi: 10.1080/13607863.2016.1254596. Droes RM, Chattat R, Diaz A, Gove D, Graff M, Murphy K, Verbeek H, Vernooij-Dassen M, Clare L, Johannessen A, et al. Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice. Aging Ment Health 2016:1–14. doi: 10.​1080/​13607863.​2016.​1254596.
5.
go back to reference Clement S, Schauman O, Graham T, Maggioni F, Evans-Lacko S, Bezborodovs N, Morgan C, Rusch N, Brown JS, Thornicroft G. What is the impact of mental health-related stigma on help-seeking? A systematic review of quantitative and qualitative studies. Psychol Med. 2015;45:11–27. doi:10.1017/s0033291714000129.CrossRefPubMed Clement S, Schauman O, Graham T, Maggioni F, Evans-Lacko S, Bezborodovs N, Morgan C, Rusch N, Brown JS, Thornicroft G. What is the impact of mental health-related stigma on help-seeking? A systematic review of quantitative and qualitative studies. Psychol Med. 2015;45:11–27. doi:10.​1017/​s003329171400012​9.CrossRefPubMed
6.
go back to reference Dam AEH, Boots LM, van Boxtel MP, Verhey FR, de Vugt ME. A mismatch between supply and demand of social support in dementia care: a qualitative study on the perspectives of spousal caregivers and their social network members. Int Psychogeriatr/IPA. 2017;1–12. http://doi.org/10.1017/S1041610217000898. Dam AEH, Boots LM, van Boxtel MP, Verhey FR, de Vugt ME. A mismatch between supply and demand of social support in dementia care: a qualitative study on the perspectives of spousal caregivers and their social network members. Int Psychogeriatr/IPA. 2017;1–12. http://​doi.​org/​10.​1017/​S104161021700089​8.
7.
go back to reference Slegers K, van Boxtel MP. Actual use of computers and the internet by older adults: potential benefits and risks. In Zheng RZ, Hill RD, & Gardner MK (Eds.), Engaging older adults with modern technology: Internet use and information access needs. Hershey PA: IGI Global. 2012;1:161–190. Slegers K, van Boxtel MP. Actual use of computers and the internet by older adults: potential benefits and risks. In Zheng RZ, Hill RD, & Gardner MK (Eds.), Engaging older adults with modern technology: Internet use and information access needs. Hershey PA: IGI Global. 2012;1:161–190.
8.
go back to reference Boots LM, de Vugt ME, Withagen HE, Kempen GI, Verhey FR. Development and initial evaluation of the web-based self-management program “partner in balance” for family caregivers of people with early stage dementia: an exploratory mixed-methods study. JMIR Res Protoc. 2016;5(1):e33.CrossRefPubMedPubMedCentral Boots LM, de Vugt ME, Withagen HE, Kempen GI, Verhey FR. Development and initial evaluation of the web-based self-management program “partner in balance” for family caregivers of people with early stage dementia: an exploratory mixed-methods study. JMIR Res Protoc. 2016;5(1):e33.CrossRefPubMedPubMedCentral
9.
go back to reference Boots LM, de Vugt ME, van Knippenberg RJ, Kempen GI, Verhey FR. A systematic review of Internet-based supportive interventions for caregivers of patients with dementia. Int J Geriatr Psychiatry. 2014;29:331–44. doi:10.1002/gps.4016.CrossRefPubMed Boots LM, de Vugt ME, van Knippenberg RJ, Kempen GI, Verhey FR. A systematic review of Internet-based supportive interventions for caregivers of patients with dementia. Int J Geriatr Psychiatry. 2014;29:331–44. doi:10.​1002/​gps.​4016.CrossRefPubMed
10.
go back to reference Boots LM, Wolfs CA, Verhey FR, Kempen GI, de Vugt ME. Qualitative study on needs and wishes of early-stage dementia caregivers: the paradox between needing and accepting help. Int Psychogeriatr. 2015;27:927–36.CrossRefPubMed Boots LM, Wolfs CA, Verhey FR, Kempen GI, de Vugt ME. Qualitative study on needs and wishes of early-stage dementia caregivers: the paradox between needing and accepting help. Int Psychogeriatr. 2015;27:927–36.CrossRefPubMed
11.
go back to reference Meiland F, Innes A, Mountain G, Robinson L, van der Roest H, García-Casal JA, Gove D, Thyrian JR, Evans S, Dröes R-M, et al. Technologies to support community-dwelling persons with dementia: a position paper on issues regarding development, usability, effectiveness and cost-effectiveness, deployment, and ethics. JMIR Rehabil Assist Technol. 2017;4:e1. doi:10.2196/rehab.6376.CrossRefPubMedPubMedCentral Meiland F, Innes A, Mountain G, Robinson L, van der Roest H, García-Casal JA, Gove D, Thyrian JR, Evans S, Dröes R-M, et al. Technologies to support community-dwelling persons with dementia: a position paper on issues regarding development, usability, effectiveness and cost-effectiveness, deployment, and ethics. JMIR Rehabil Assist Technol. 2017;4:e1. doi:10.​2196/​rehab.​6376.CrossRefPubMedPubMedCentral
12.
go back to reference Dam AEH, van Boxtel MP, Rozendaal N, Verhey FR, de Vugt ME. Development and feasibility of Inlife: a pilot study of an online social support intervention for informal caregivers of people with dementia, in press 2017. Dam AEH, van Boxtel MP, Rozendaal N, Verhey FR, de Vugt ME. Development and feasibility of Inlife: a pilot study of an online social support intervention for informal caregivers of people with dementia, in press 2017.
13.
go back to reference Vernooij-Dassen MJ, Persoon JM, Felling AJ. Predictors of sense of competence in caregivers of demented persons. Soc Sci Med. 1996;43:41–9.CrossRefPubMed Vernooij-Dassen MJ, Persoon JM, Felling AJ. Predictors of sense of competence in caregivers of demented persons. Soc Sci Med. 1996;43:41–9.CrossRefPubMed
14.
go back to reference Vernooij-Dassen MJ, Felling AJ, Brummelkamp E, Dauzenberg MG, Bos GA, Grol R. Assessment of caregiver's competence in dealing with the burden of caregiving for a dementia patient: a Short Sense of Competence Questionnaire (SSCQ) suitable for clinical practice. J Am Geriatr Soc. 1999;47:256–7.CrossRefPubMed Vernooij-Dassen MJ, Felling AJ, Brummelkamp E, Dauzenberg MG, Bos GA, Grol R. Assessment of caregiver's competence in dealing with the burden of caregiving for a dementia patient: a Short Sense of Competence Questionnaire (SSCQ) suitable for clinical practice. J Am Geriatr Soc. 1999;47:256–7.CrossRefPubMed
16.
go back to reference van Knippenberg RJ, de Vugt ME, Ponds RW, Myin-Germeys I, Verhey FR. Dealing with daily challenges in dementia (deal-id study): effectiveness of the experience sampling method intervention 'Partner in Sight' for spousal caregivers of people with dementia: design of a randomized controlled trial. BMC Psychiatry. 2016;16:136. doi:10.1186/s12888-016-0834-5.CrossRefPubMedPubMedCentral van Knippenberg RJ, de Vugt ME, Ponds RW, Myin-Germeys I, Verhey FR. Dealing with daily challenges in dementia (deal-id study): effectiveness of the experience sampling method intervention 'Partner in Sight' for spousal caregivers of people with dementia: design of a randomized controlled trial. BMC Psychiatry. 2016;16:136. doi:10.​1186/​s12888-016-0834-5.CrossRefPubMedPubMedCentral
17.
go back to reference Zimet GD, Dahlem NW, Zimet SG, Farley GK. The multidimensional scale of perceived social support. J Pers Assess. 1988;52:30–41.CrossRef Zimet GD, Dahlem NW, Zimet SG, Farley GK. The multidimensional scale of perceived social support. J Pers Assess. 1988;52:30–41.CrossRef
18.
go back to reference Zimet GD, Powell SS, Farley GK, Werkman S, Berkoff KA. Psychometric characteristics of the multidimensional scale of perceived social support. J Pers Assess. 1990;55:610–7.CrossRefPubMed Zimet GD, Powell SS, Farley GK, Werkman S, Berkoff KA. Psychometric characteristics of the multidimensional scale of perceived social support. J Pers Assess. 1990;55:610–7.CrossRefPubMed
19.
go back to reference Pedersen SS, Spinder H, Erdman RA, Denollet J. Poor perceived social support in implantable cardioverter defibrillator (ICD) patients and their partners: cross-validation of the multidimensional scale of perceived social support. Psychosomatics. 2009;50:461–7.CrossRefPubMed Pedersen SS, Spinder H, Erdman RA, Denollet J. Poor perceived social support in implantable cardioverter defibrillator (ICD) patients and their partners: cross-validation of the multidimensional scale of perceived social support. Psychosomatics. 2009;50:461–7.CrossRefPubMed
20.
go back to reference Marziali E, Garcia LJ. Dementia caregivers’ responses to 2 internet-based intervention programs. Am J Alzheimers Dis Other Demen. 2011;26:36–43.CrossRefPubMed Marziali E, Garcia LJ. Dementia caregivers’ responses to 2 internet-based intervention programs. Am J Alzheimers Dis Other Demen. 2011;26:36–43.CrossRefPubMed
21.
go back to reference Kempen G, Van Eijk L. The psychometric properties of the SSL12-I, a short scale for measuring social support in the elderly. Soc Indic Res. 1995;35:303–12.CrossRef Kempen G, Van Eijk L. The psychometric properties of the SSL12-I, a short scale for measuring social support in the elderly. Soc Indic Res. 1995;35:303–12.CrossRef
22.
go back to reference Dröes R-M, Meiland F, Schmitz M, Van Tilburg W. Effect of the Meeting Centres Support Program on informal carers of people with dementia: results from a multi-centre study. Aging Mental Health. 2006;10:112–24.CrossRefPubMed Dröes R-M, Meiland F, Schmitz M, Van Tilburg W. Effect of the Meeting Centres Support Program on informal carers of people with dementia: results from a multi-centre study. Aging Mental Health. 2006;10:112–24.CrossRefPubMed
23.
go back to reference De Jong Gierveld J, Van Tilburg T. Manual of the Loneliness Scale 1999. Department of Social Research Methodology, Vrije Universiteit Amsterdam, Amsterdam (updated version 1801 02) 1999. De Jong Gierveld J, Van Tilburg T. Manual of the Loneliness Scale 1999. Department of Social Research Methodology, Vrije Universiteit Amsterdam, Amsterdam (updated version 1801 02) 1999.
24.
go back to reference Penning MJ, Liu G, Chou PHB. Measuring loneliness among middle-aged and older adults: the UCLA and de Jong Gierveld Loneliness Scales. Soc Indic Res. 2014;118:1147–66.CrossRef Penning MJ, Liu G, Chou PHB. Measuring loneliness among middle-aged and older adults: the UCLA and de Jong Gierveld Loneliness Scales. Soc Indic Res. 2014;118:1147–66.CrossRef
25.
go back to reference Lubben J, Blozik E, Gillmann G, Iliffe S, von Renteln KW, Beck JC, Stuck AE. Performance of an abbreviated version of the Lubben Social Network Scale among three European community-dwelling older adult populations. Gerontologist. 2006;46:503–13.CrossRefPubMed Lubben J, Blozik E, Gillmann G, Iliffe S, von Renteln KW, Beck JC, Stuck AE. Performance of an abbreviated version of the Lubben Social Network Scale among three European community-dwelling older adult populations. Gerontologist. 2006;46:503–13.CrossRefPubMed
26.
go back to reference Kerpershoek L, de Vugt M, Wolfs C, Jelley H, Orrel M, Woods B, Stephan A, Bieber A, Meyer G, Engedal K. Access to timely formal dementia care in Europe: protocol of the Actifcare (ACcess to Timely Formal Care) study. BMC Health Serv Res. 2016;16:423.CrossRefPubMedPubMedCentral Kerpershoek L, de Vugt M, Wolfs C, Jelley H, Orrel M, Woods B, Stephan A, Bieber A, Meyer G, Engedal K. Access to timely formal dementia care in Europe: protocol of the Actifcare (ACcess to Timely Formal Care) study. BMC Health Serv Res. 2016;16:423.CrossRefPubMedPubMedCentral
27.
go back to reference Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67:361–70.CrossRefPubMed Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67:361–70.CrossRefPubMed
28.
go back to reference Spinhoven P, Ormel J, Sloekers P, Kempen G, Speckens A, Van Hemert A. A validation study of the Hospital Anxiety and Depression Scale (HADS) in different groups of Dutch subjects. Psychol Med. 1997;27:363–70.CrossRefPubMed Spinhoven P, Ormel J, Sloekers P, Kempen G, Speckens A, Van Hemert A. A validation study of the Hospital Anxiety and Depression Scale (HADS) in different groups of Dutch subjects. Psychol Med. 1997;27:363–70.CrossRefPubMed
29.
go back to reference Coast J, Flynn TN, Natarajan L, Sproston K, Lewis J, Louviere JJ, Peters TJ. Valuing the ICECAP capability index for older people. Soc Sci Med. 2008;67:874–82.CrossRefPubMed Coast J, Flynn TN, Natarajan L, Sproston K, Lewis J, Louviere JJ, Peters TJ. Valuing the ICECAP capability index for older people. Soc Sci Med. 2008;67:874–82.CrossRefPubMed
30.
go back to reference Makai P, Looman W, Adang E, Melis R, Stolk E, Fabbricotti I. Cost-effectiveness of integrated care in frail elderly using the ICECAP-O and EQ-5D: does choice of instrument matter? Eur J Health Econ. 2015;16:437–50.CrossRefPubMed Makai P, Looman W, Adang E, Melis R, Stolk E, Fabbricotti I. Cost-effectiveness of integrated care in frail elderly using the ICECAP-O and EQ-5D: does choice of instrument matter? Eur J Health Econ. 2015;16:437–50.CrossRefPubMed
31.
go back to reference Brouwer WB, van Exel NJ, Van Gorp B, Redekop W. The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res. 2006;15:1005–21.CrossRefPubMed Brouwer WB, van Exel NJ, Van Gorp B, Redekop W. The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res. 2006;15:1005–21.CrossRefPubMed
32.
go back to reference Hoefman RJ, van Exel NJA, De Jong SL, Redekop WK, Brouwer WB. A new test of the construct validity of the CarerQol instrument: measuring the impact of informal care giving. Qual Life Res. 2011;20:875–87.CrossRefPubMedPubMedCentral Hoefman RJ, van Exel NJA, De Jong SL, Redekop WK, Brouwer WB. A new test of the construct validity of the CarerQol instrument: measuring the impact of informal care giving. Qual Life Res. 2011;20:875–87.CrossRefPubMedPubMedCentral
33.
go back to reference Kraijo H, Brouwer W, de Leeuw R, Schrijvers G, van Exel J. The perseverance time of informal carers of dementia patients: validation of a new measure to initiate transition of care at home to nursing home care. J Alzheimers Dis. 2014;40:631–42.PubMed Kraijo H, Brouwer W, de Leeuw R, Schrijvers G, van Exel J. The perseverance time of informal carers of dementia patients: validation of a new measure to initiate transition of care at home to nursing home care. J Alzheimers Dis. 2014;40:631–42.PubMed
34.
go back to reference Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. J Health Soc Behav. 1983;24(4):385–96. Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. J Health Soc Behav. 1983;24(4):385–96.
35.
go back to reference Given CW, Given B, Stommel M, Collins C, King S, Franklin S. The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health. 1992;15:271–83.CrossRefPubMed Given CW, Given B, Stommel M, Collins C, King S, Franklin S. The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health. 1992;15:271–83.CrossRefPubMed
36.
go back to reference Graff MJ, Vernooij-Dassen MJ, Thijssen M, Dekker J, Hoefnagels WH, Rikkert MGO. Community based occupational therapy for patients with dementia and their care givers: randomised controlled trial. BMJ. 2006;333:1196.CrossRefPubMedPubMedCentral Graff MJ, Vernooij-Dassen MJ, Thijssen M, Dekker J, Hoefnagels WH, Rikkert MGO. Community based occupational therapy for patients with dementia and their care givers: randomised controlled trial. BMJ. 2006;333:1196.CrossRefPubMedPubMedCentral
37.
go back to reference Schafer JL, Graham JW. Missing data: our view of the state of the art. Psychol Methods. 2002;7:147–77.CrossRefPubMed Schafer JL, Graham JW. Missing data: our view of the state of the art. Psychol Methods. 2002;7:147–77.CrossRefPubMed
38.
go back to reference White IR, Horton NJ, Carpenter J, statistics rim, social, Pocock SJ. Strategy for intention to treat analysis in randomised trials with missing outcome data. BMJ 2011;342. doi:10.1136/bmj.d40. White IR, Horton NJ, Carpenter J, statistics rim, social, Pocock SJ. Strategy for intention to treat analysis in randomised trials with missing outcome data. BMJ 2011;342. doi:10.​1136/​bmj.​d40.
39.
go back to reference Bardram JE, Hansen TR, Mogensen M, Soegaard M. Experiences from real-world deployment of context-aware technologies in a hospital environment. In International Conference on Ubiquitous Computing. Heidelberg: Springer. 2006;369–86. Bardram JE, Hansen TR, Mogensen M, Soegaard M. Experiences from real-world deployment of context-aware technologies in a hospital environment. In International Conference on Ubiquitous Computing. Heidelberg: Springer. 2006;369–86.
40.
go back to reference Dam AE, de Vugt ME, Klinkenberg IP, Verhey FR, van Boxtel MP. A systematic review of social support interventions for caregivers of people with dementia: are they doing what they promise? Maturitas. 2016;85:117–30.CrossRefPubMed Dam AE, de Vugt ME, Klinkenberg IP, Verhey FR, van Boxtel MP. A systematic review of social support interventions for caregivers of people with dementia: are they doing what they promise? Maturitas. 2016;85:117–30.CrossRefPubMed
41.
go back to reference Droes RM, Chattat R, Diaz A, Gove D, Graff M, Murphy K, Verbeek H, Vernooij-Dassen M, Clare L, Johannessen A, et al. Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice. Aging Ment Health. 2017;21:4–17. doi:10.1080/13607863.2016.1254596.PubMed Droes RM, Chattat R, Diaz A, Gove D, Graff M, Murphy K, Verbeek H, Vernooij-Dassen M, Clare L, Johannessen A, et al. Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice. Aging Ment Health. 2017;21:4–17. doi:10.​1080/​13607863.​2016.​1254596.PubMed
Metadata
Title
Effectiveness of an online social support intervention for caregivers of people with dementia: the study protocol of a randomised controlled trial
Authors
Alieske E. H. Dam
Marjolein E. de Vugt
Martin P. J. van Boxtel
Frans R. J. Verhey
Publication date
01-12-2017
Publisher
BioMed Central
Published in
Trials / Issue 1/2017
Electronic ISSN: 1745-6215
DOI
https://doi.org/10.1186/s13063-017-2097-y

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