Effectiveness of the blended care self-management program "Partner in Balance" for early-stage dementia caregivers: Study protocol for a randomized controlled trial

Trials

Volumn 17, Issue 1, 2016, Pages

  Boots, Lizzy M M ^a   de Vugt, Marjolein E ^a   Kempen, Gertrudis I J M ^a   Verhey, Frans R J ^a  

^a MAASTRICHT UNIVERSITY   (Netherlands)

Author keywords

Family; Online intervention; RCT; Timely; Web based

Indexed keywords

ADULT; ANXIETY DISORDER; ARTICLE; CAREGIVER; CONTROLLED STUDY; COST BENEFIT ANALYSIS; DEMENTIA; DEPRESSION; EXTERNAL VALIDITY; FOLLOW UP; GOAL ATTAINMENT; HEALTH CARE COST; HUMAN; HUMAN RELATION; INTERNAL VALIDITY; MASTERY; MENTAL FUNCTION; OUTCOME ASSESSMENT; PARTNER IN BALANCE; QUALITY OF LIFE; RANDOMIZED CONTROLLED TRIAL; SELF CARE; SELF CONCEPT; SEMI STRUCTURED INTERVIEW; SINGLE BLIND PROCEDURE; STRESS; SYMPTOM; WELLBEING; CLINICAL PROTOCOL; CLINICAL TRIAL; COPING BEHAVIOR; ECONOMICS; HOME CARE; INTERNET; INTERVIEW; MENTAL HEALTH; METHODOLOGY; MULTICENTER STUDY; NETHERLANDS; PROCEDURES; PSYCHOLOGY; SEVERITY OF ILLNESS INDEX; TELEMEDICINE; TIME FACTOR; TREATMENT OUTCOME;

ADAPTATION, PSYCHOLOGICAL; CAREGIVERS; CLINICAL PROTOCOLS; COST-BENEFIT ANALYSIS; DEMENTIA; HEALTH CARE COSTS; HOME CARE SERVICES; HUMANS; INTERNET; INTERVIEWS AS TOPIC; MENTAL HEALTH; NETHERLANDS; RESEARCH DESIGN; SELF CARE; SELF EFFICACY; SEVERITY OF ILLNESS INDEX; SINGLE-BLIND METHOD; TELEMEDICINE; TIME FACTORS; TREATMENT OUTCOME;

EID: 84977648208     PISSN: None     EISSN: 17456215     Source Type: Journal    
DOI: 10.1186/s13063-016-1351-z     Document Type: Article

References (61)

1. Alzheimer's Association. Alzheimer's disease facts and figures. Alzheimers Dement. 2014;10(2):e47-e92.
2. Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci. 2009;11(2):217-28.
3. Olazaran J, Reisberg B, Clare L, et al. Nonpharmacological therapies in Alzheimer's disease: a systematic review of efficacy. Dement Geriatr Cogn Disord. 2010;30(2):161-78.
4. Brodaty H, Green A, Koschera A. Meta-analysis of psychosocial interventions for caregivers of people with dementia. J Am Geriatr Soc. 2003;51(5):657-64.
5. Tang WK, Chan CY. Effects of psychosocial interventions on self-efficacy of dementia caregivers: a literature review. Int J Geriatr Psychiatry. 2015;31(5):475-93.
6. Macdonald A, Cooper B. Long-term care and dementia services: an impending crisis. Age Ageing. 2007;36(1):16-22.
7. Glueckauf RL, Loomis JS. Alzheimer's caregiver support online: lessons learned, initial findings and future directions. Neurorehabilitation. 2003;18(2):135-46.
8. Martin-Carrasco M, Martin MF, Valero CP, Millan PR, Garcia CI, Montalban SR, et al. Effectiveness of a psychoeducational intervention program in the reduction of caregiver burden in Alzheimer's disease patients' caregivers. Int J Geriatr Psychiatry. 2009;24(5):489-99.
9. Lewis BA, Williams DM, Neighbors CJ, Jakicic JM, Marcus BH. Cost analysis of Internet vs. print interventions for physical activity promotion. Psychol Sport Exerc. 2010;11(3):246-9.
10. Davis Kirsch SE, Lewis FM. Using the world wide web in health-related intervention research. CIN: Comp Inform Nurs. 2004;22(1):8-18.
11. Harrell KM, Wilkins SS, Connor MK, Chodosh J. Telemedicine and the evaluation of cognitive impairment: the additive value of neuropsychological assessment. J Am Med Dir Assoc. 2014;15(8):600-6.
12. Serafini JD, Damianakis T, Marziali E. Clinical practice standards and ethical issues applied to a virtual group intervention for spousal caregivers of people with Alzheimer's. Soc Work Health Care. 2007;44(3):225-43.
13. Robinson L, Brittain K, Lindsay S, Jackson D, Olivier P. Keeping in touch everyday (kite) project: developing assistive technologies with people with dementia and their carers to promote independence. Int Psychogeriatr. 2009;21(3):494-502.
14. Cheng ST, Lau RW, Mak EP, Ng NS, Lam LC, Fung HH, et al. A benefit-finding intervention for family caregivers of persons with Alzheimer disease: study protocol of a randomized controlled trial. Trials. 2012;13:98.
15. Blom MM, Zarit SH, Groot Zwaaftink RB, Cuijpers P, Pot AM. Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial. PLoS One. 2015;10(2), e0116622.
16. Cristancho-Lacroix V, Wrobel J, Cantegreil-Kallen I, Dub T, Rouquette A, Rigaud AS. A web-based psychoeducational program for informal caregivers of patients with Alzheimer's disease: a pilot randomized controlled trial. J Med Internet Res. 2015;17(5), e117.
17. 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(4):331-44.
18. van der Vaart R, Witting M, Riper H, Kooistra L, Bohlmeijer ET, van Gemert-Pijnen LJEWC. Blending online therapy into regular face-to-face therapy for depression: content, ratio and preconditions according to patients and therapists using a Delphi study. BMC Psychiatry 2014, 14(355). doi: 10.1186/s12888-014-0355-z
19. Wilhelmsen M, Lillevoll K, Risør MB, Høifødt R, Johansen ML, Waterloo K, Eisemann M, Kolstrup N. Motivation to persist with Internet-based cognitive behavioural treatment using blended care: a qualitative study. BMC Psychiatry 2013, 13(296). doi: 10.1186/1471-244X-13-296
20. 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(6):927-36.
21. Brodaty H, Thomson C, Thompson C, Fine M. Why caregivers of people with dementia and memory loss don't use services. Int J Geriatr Psychiatry. 2005;20(6):537-46.
22. MacKenzie J. Stigma and dementia: East European and South Asian family carers negotiating stigma in the UK. Dementia. 2006;5:233-47.
23. Shim B, Barroso J, Davis LL. A comparative qualitative analysis of stories of spousal caregivers of people with dementia: negative, ambivalent, and positive experiences. Int J Nurs Stud. 2012;49(2):220-9.
24. Banningh LW, Vernooij-Dassen MJ, Vullings M, Prins JB, Rikkert MG, Kessels RP. Learning to live with a loved one with mild cognitive impairment: effectiveness of a waiting list controlled trial of a group intervention on significant others' sense of competence and well-being. Am J Alzheimers Dis Other Demen. 2013;28(3):228-38.
25. de Vugt ME, Verhey FR. The impact of early dementia diagnosis and intervention on informal caregivers. Prog Neurobiol. 2013;110:54-62.
26. Kjallman Alm A, Hellzen O, Norbergh KG. Experiences of long term ongoing structured support in early stage of dementia - a case study. Int J Older People Nurs 2014;9(4):289-297.
27. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M, et al. Developing and evaluating complex interventions: the new medical research council guidance. BMJ. 2008;337:a1655.
28. 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.
29. Leontjevas R, Gerritsen DL, Koopmans RT, Smalbrugge M, Vernooij-Dassen MJ. Process evaluation to explore internal and external validity of the "act in case of depression" care program in nursing homes. J Am Med Dir Assoc. 2012;13(5):488. e481-488.
30. Morris JC. Clinical dementia rating: a reliable and valid diagnostic and staging measure for dementia of the Alzheimer type. Int Psychogeriatr. 1997;9 Suppl 1:173-6. discussion 177-178.
31. Miller WR, Rollnick S. Motivational interviewing: preparing people for change. 2nd ed. New York: The Guilford Press; 2002.
32. Daniels R, van Rossum E, Metzelthin S, Sipers W, Habets H, Hobma S, et al. A disability prevention programme for community-dwelling frail older persons. Clin Rehabil. 2011;25(11):963-74.
33. Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26(1):1-7.
34. Fortinsky RH, Kercher K, Burant CJ. Measurement and correlates of family caregiver self-efficacy for managing dementia. Aging Ment Health. 2002;6(2):153-60.
35. Lorig K, Chastain RL, Ung E, Shoor S, Holman HR. Development and evaluation of a scale to measure perceived self-efficacy in people with arthritis. Arthritis Rheum. 1989;32(1):37-44.
36. Radloff LS. The ces-d scale: a self-report depression scale for research in the general population. Appl Psychol Meas. 1977;1:385-401.
37. Pinquart M, Sorensen S. Helping caregivers of persons with dementia: which interventions work and how large are their effects? Int Psychogeriatr. 2006;18(4):577-95.
38. Kiresuk TJ, Sherman RE. Goal attainment scaling: a general method for evaluating comprehensive community mental health programs. Community Ment Health J. 1968;4(6):443-53.
39. Kiresuk TJ, Smith A, Cardillo JE. Goal attainment scaling: applications, theory, and measurement, vol. xviii. Hillsdale: Lawrence Erlbaum; 1994.
40. Marson SM, Wei G, Wasserman D. A reliability analysis of goal attainment scaling (GAS) weights. Am J Eval. 2009;30(2):203-16.
41. Pearlin LI, Schooler C. The structure of coping. J Health Soc Behav. 1978;19(1):2-21.
42. Kempen GIJM. Psychometric properties of GLAS baseline measures: a pilot study (in Dutch). The Netherlands: Northern Centre for Healthcare Research, University of Groningen; 1992.
43. Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. J Health Soc Behav. 1983;24(4):385-96.
44. Andreou E, Alexopoulos EC, Lionis C, Varvogli L, Gnardellis C, Chrousos GP, et al. Perceived stress scale: reliability and validity study in Greece. Int J Environ Res Public Health. 2011;8(8):3287-98.
45. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67(6):361-70.
46. Bjelland I, Dahl AA, Haug TT, Neckelmann D. The validity of the hospital anxiety and depression scale. An updated literature review. J Psychosom Res. 2002;52(2):69-77.
47. Grewal I, Lewis J, Flynn T, Brown J, Bond J, Coast J. Developing attributes for a generic quality of life measure for older people: preferences or capabilities? Soc Sci Med. 2006;62(8):1891-901.
48. 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(4):437-50.
49. Lawrence RH, Tennstedt SL, Assmann SF. Quality of the caregiver-care recipient relationship: does it offset negative consequences of caregiving for family caregivers? Psychol Aging. 1998;13(1):150-8.
50. de Vugt ME, Stevens F, Aalten P, Lousberg R, Jaspers N, Winkens I, et al. Behavioural disturbances in dementia patients and quality of the marital relationship. Int J Geriatr Psychiatry. 2003;18(2):149-54.
51. Hoekstra HA, Ormel J, De Fruyt F. Handleiding bij de neo persoonlijkheids vragenlijsten neo-pi-r en neo-ffi (manual for the neo personality inventories neo-pi-r and neo-ffi). Lisse: Swets & Zeitlinger; 1996.
52. Costa PT, McCrae RR. Neo pi-r: professional manual. Odessa: Psychological Assessment Resources; 1992.
53. Hakkaart-van Roijen L, Tan SS, Bouwmans CAM. Handleiding voor kostenonderzoek. Methoden en standaard kostprijzen voor economische evaluaties in de gezondheidszorg. Geactualiseerde versie 2010 (Dutch manual for costing in economic evaluations). Diemen: College voor zorgverzekeringen (CVZ); 2011.
54. Wimo A, Winblad B, Stoffler A, Wirth Y, Mobius HJ. Resource utilisation and cost analysis of memantine in patients with moderate to severe Alzheimer's disease. Pharmacoeconomics. 2003;21(5):327-40.
55. Beauchamp N, Irvine AB, Seeley J, Johnson B. Worksite-based Internet multimedia program for family caregivers of persons with dementia. Gerontologist. 2005;45(6):793-801.
56. Garson GD. Missing values analysis and data imputation. In: North Carolina State University. Asheboro, USA: Statistical Associates Publishers; 2015.
57. van Gemert-Pijnen JE, Nijland N, van Limburg M, Ossebaard HC, Kelders SM, Eysenbach G, et al. A holistic framework to improve the uptake and impact of ehealth technologies. J Med Internet Res. 2011;13(4), e111.
58. Bouwens SF, van Heugten CM, Verhey FR. The practical use of goal attainment scaling for people with acquired brain injury who receive cognitive rehabilitation. Clin Rehabil. 2009;23(4):310-20.
59. Moore GF, Audrey S, Barker M, et al. Process evaluation of complex interventions: Medical Research Council guidance. BMJ. 2015;350:h1258.
60. Greene JC, Caracelli VJ, Graham WF. Toward a conceptual framework for mixed-method evaluation designs. Educ Eval Pol Anal. 1989;11(3):255-74.
61. Campbell M, Fitzpatrick R, Haines A, Kinmonth AL, Sandercock P, Spiegelhalter D, et al. Framework for design and evaluation of complex interventions to improve health. BMJ. 2000;321(7262):694-6.