The use of ecological momentary assessment for family caregivers of adults with chronic conditions: A systematic review

Background
Ecological momentary assessment (EMA) as a real-time data collection method can provide insight into the daily experiences of family caregivers.
Purpose
This systematic review aimed to synthesize studies involving EMA completed by family caregivers of adults with chronic conditions.
Methods
A systematic search was conducted within six databases for articles published from the inception of the database through September 2023. We extracted the characteristics of the included studies and data on EMA-specific methods to determine the quality of the included studies.
Results
A total of 12 studies involving EMA completed by family caregivers of adults with chronic conditions were identified, with almost all studies focused on caregivers of persons with Alzheimer’s or dementia-related conditions. The average compliance rate across the included studies was 75%, below the recommended rate. In addition, most of the included studies did not collect the family caregivers’ daily activities and care contexts in their responses (i.e., affect, stress, well-being, care demand, and fatigue) to the EMA prompts.
Discussion
This review showed that using EMA to collect information on family caregivers of adults with chronic health conditions appeared feasible and acceptable. However, the methodology or design of using EMA to collect caregiver information in this population is still preliminary. The limited number of existing studies that have used EMA to capture the daily experiences of family caregivers does not provide key information that could improve understanding of caregivers’ emotional experiences and well-being in real-life situations. We identified gaps in the literature that warrant additional EMA studies for this population.
1. Kokorelias KM, Gignac MAM, Naglie G, Cameron JI. Towards a universal model of family centered care: a scoping review. BMC Health Serv Res. 2019;19(1):564. doi:10.1186/s12913-019-4394-5
2. Riffin C, Van Ness PH, Wolff JL, Fried T. Family and Other Unpaid Caregivers and Older Adults with and without Dementia and Disability. J Am Geriatr Soc. 2017;65(8):1821-1828. doi:10.1111/jgs.14910
3. Wennberg AM, Anderson LR, Cagnin A, Chen-Edinboro LP, Pini L. How both positive and burdensome caregiver experiences are associated with care recipient cognitive performance: Evidence from the National Health and Aging Trends Study and National Study of Caregiving. Front Public Health. 2023;11(1130099). doi:10.3389/fpubh.2023.1130099
4. Brown RM, Brown SL. Informal caregiving: A reappraisal of effects on caregivers. Social Issues Policy Review. 2014;8(1):74-102. doi:10.1111/sipr.12002
5. Karg N, Graessel E, Randzio O, Pendergrass A. Dementia as a predictor of care-related quality of life in informal caregivers: a cross-sectional study to investigate differences in health-related outcomes between dementia and non-dementia caregivers. BMC Geriatr. 2018;18(1):189. doi:10.1186/s12877-018-0885-1
6. Koyama A, Matsushita M, Hashimoto M, et al. Mental health among younger and older caregivers of dementia patients. Psychogeriatrics. 2017;17(2):108-114. doi:10.1111/psyg.12200
7. Ma M, Dorstyn D, Ward L, Prentice S. Alzheimers’ disease and caregiving: a meta-analytic review comparing the mental health of primary carers to controls. Aging Ment Health. 2017;22(11):1395-1405. doi:10.1080/13607863.2017.1370689
8. Cejalvo E, Martí-Vilar M, Merino-Soto C, Aguirre-Morales MT. Caregiving Role and Psychosocial and Individual Factors: A Systematic Review. Healthcare. 2021;9(12):1690. doi:10.3390/healthcare9121690
9. Vaingankar JA, Chong SA, Abdin E, et al. Psychiatric morbidity and its correlates among informal caregivers of older adults. Compr Psychiatry. 2016;68:178-185. doi:10.1016/j.comppsych.2016.04.017
10. Whitehead L, Jacob E, Towell A, Abu-Qamar M, Cole-Heath A. The role of the family in supporting the self-management of chronic conditions: A qualitative systematic review. J Clin Nurs. 2018;27(1-2):22-30. doi:10.1111/jocn.13775
11. Fee A, McIlfatrick S, Ryan A. Examining the support needs of older male spousal caregivers of people with a long-term condition: A systematic review of the literature. Int J Older People Nurs. 2020;15(3):e12318. doi:10.1111/opn.12318
12. Hall S, Rohatinsky N, Holtslander L, Peacock S. Caregivers to older adults require support: A scoping review of their priorities. Health Soc Care Community. 2022;30(6):e3789-e3809. doi:10.1111/hsc.14071
13. Edwards B, Higgins DJ. Is caring a health hazard? The mental health and vitality of carers of a person with a disability in Australia. Med J Aust. 2009;190(S7):S61-65. doi:10.5694/j.1326-5377.2009.tb02472.x
14. Hoffman GJ, Burgard S, Mendez-Luck CA, Gaugler JE. Interdependence in Health and Functioning Among Older Spousal Caregivers and Care Recipients. West J Nurs Res. 2019;41(5):685-703. doi:10.1177/0193945918781057
15. Linton KF. Latina/o and non-latina/o brain injury and dementia patients’ and caregivers’ health: An actor/partner interdependence model. Brain Impairment. 2020;21(3):237-246. doi:10.1017/brimp.2020.1
16. van Knippenberg RJM, de Vugt ME, Ponds RW, Myin-Germeys I, Verhey FRJ. Dealing with Daily Challenges in Dementia (Deal-id Study): An Experience Sampling Study to Assess Caregivers’ Sense of Competence and Experienced Positive Affect in Daily Life. Am J Geriatr Psychiatry. 2017;25(8):852-859. doi:10.1016/j.jagp.2016.10.015
17. Potts C, Bond R, Ryan A, et al. Ecological Momentary Assessment Within a Digital Health Intervention for Reminiscence in Persons With Dementia and Caregivers: User Engagement Study. JMIR Mhealth Uhealth. 2020;8(7):e17120. doi:10.2196/17120
18. Lazzari C. Ecological Momentary Assessments and Interventions in Alzheimer’s Caregiving. Curr Alzheimer Res. 2018;15(11):1027-1031. doi:10.2174/1567205015666180702111523
19. Burke LE, Shiffman S, Music E, et al. Ecological Momentary Assessment in Behavioral Research: Addressing Technological and Human Participant Challenges. J Med Internet Res. 2017;19(3):e77. doi:10.2196/jmir.7138
20. Dao KP, de Cocker K, Tong HL, Kocaballi AB, Chow C, Laranjo L. Smartphone-delivered ecological momentary interventions based on ecological momentary assessments to promote health behaviors: Systematic review and adapted checklist for reporting ecological momentary assessment and intervention studies. JMIR mHealth and uHealth. 2021;9(11):e22890. doi:10.2196/22890
21. Csikszentmihalyi M, Larson R. Validity and reliability of the Experience-Sampling Method. J Nerv Ment Dis. 1987;175(9):526-536. doi:10.1097/00005053-198709000-00004
22. Stinson L, Liu Y, Dallery J. Ecological Momentary Assessment: A Systematic Review of Validity Research. Perspect Behav Sci. 2022;45(2):469-493. doi:10.1007/s40614-022-00339-w
23. Liu H, Xie QW, Lou VWQ. Everyday social interactions and intra-individual variability in affect: A systematic review and meta-analysis of ecological momentary assessment studies. Motiv Emot. 2018;43(2):339-353. doi:10.1007/s11031-018-9735-x
24. de Vries LP, Baselmans BML, Bartels M. Smartphone-Based Ecological Momentary Assessment of Well-Being: A Systematic Review and Recommendations for Future Studies. J Happiness Stud. 2021;22(5):2361-2408. doi:10.1007/s10902-020-00324-7
25. van Knippenberg RJM, de Vugt ME, Ponds RW, Myin-Germeys I, van Twillert B, Verhey FRJ. Dealing with daily challenges in dementia (deal-id study): an experience sampling study to assess caregiver functioning in the flow of daily life. Int J Geriat Psychiatry. 2016;32(9):949-958. doi:10.1002/gps.4552
26. Jean FAM, Swendsen JD, Sibon I, Fehr K, Husky M. Daily life behaviors and depression risk following stroke: a preliminary study using ecological momentary assessment. J Geriatr Psychiatry Neurol. 2013;26(3):138-143. doi:10.1177/0891988713484193
27. Myin-Germeys I, Kasanova Z, Vaessen T, et al. Experience sampling methodology in mental health research: new insights and technical developments. World Psychiatry. 2018;17(2):123-132. doi:10.1002/wps.20513
28. Nezlek JB. A multilevel framework for understanding relationships among traits, states, situations and behaviours. Eur J Pers. 2007;21(6):789-810. doi:10.1002/per.640
29. Pihet S, Passini CM, Eicher M. Good and bad days: Fluctuations in the burden of informal dementia caregivers, an experience sampling study. Nursing Research. 2017;66(6):421-431. doi:10.1097/nnr.0000000000000243
30. Fisher RS, Blum DE, DiVentura B, et al. Seizure diaries for clinical research and practice: limitations and future prospects. Epilepsy Behav. 2012;24(3):304-310. doi:10.1016/j.yebeh.2012.04.128
31. Lam J, Barr RG, Catherine N, et al. Electronic and paper diary recording of infant and caregiver behaviors. J Dev Behav Pediatr. 2010;31(9):685-693. doi:10.1097/dbp.0b013e3181e416ae
32. Bangerter A, Manyakov NV, Lewin D, et al. Caregiver Daily Reporting of Symptoms in Autism Spectrum Disorder: Observational Study Using Web and Mobile Apps. JMIR Ment Health. 2019;6(3):e11365. doi:10.2196/11365
33. Solhan MB, Trull TJ, Jahng S, Wood PK. Clinical assessment of affective instability: comparing EMA indices, questionnaire reports, and retrospective recall. Psychol Assess. 2009;21(3):425-436. doi:10.1037/a0016869
34. Colombo D, Fernández-Álvarez J, Patané A, et al. Current State and Future Directions of Technology-Based Ecological Momentary Assessment and Intervention for Major Depressive Disorder: A Systematic Review. J Clin Med. 2019;8(4):465. doi:10.3390/jcm8040465
35. Bartels SL, van Knippenberg RJM, Dassen FCM, et al. A narrative synthesis systematic review of digital self-monitoring interventions for middle-aged and older adults. Internet Interv. 2019;18:100283. doi:10.1016/j.invent.2019.100283
36. Faieta J, Sheehan J, DiGiovine C. Mhealth interventions to improve health and quality of life related outcomes for informal dementia caregivers: A scoping review. Assist Technol. 2022;34(3):362-374. doi:10.1080/10400435.2020.1829174
37. Gérain P, Wawrziczny E, Antoine P. A scoping review of intensive longitudinal methods in informal caregivers of people with dementia. BMC Geriatr. 2023;23(1):456. doi:10.1186/s12877-023-04123-6
38. Liberati A, Altman DG, Tetzlaff J, et al. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate healthcare interventions: explanation and elaboration. BMJ. 2009;339:b2700. doi:10.1136/bmj.b2700
39. Schneider S, Junghaenel DU, Gutsche T, Mak HW, Stone AA. Comparability of Emotion Dynamics Derived From Ecological Momentary Assessments, Daily Diaries, and the Day Reconstruction Method: Observational Study. J Med Internet Res. 2020;22(9):e19201. doi:10.2196/19201
40. Liao Y, Skelton K, Dunton G, Bruening M. A Systematic Review of Methods and Procedures Used in Ecological Momentary Assessments of Diet and Physical Activity Research in Youth: An Adapted STROBE Checklist for Reporting EMA Studies (CREMAS). J Med Internet Res. 2016;18(6):e151. doi:10.2196/jmir.4954
41. Monin JK, Poulin MJ, Brown SL, Langa KM. Spouses’ daily feelings of appreciation and self-reported well-being. Health Psychology. 2017;36(12):1135-1139. doi:10.1037/hea0000527
42. Bartels SL, van Knippenberg RJM, Viechtbauer W, et al. Intervention mechanisms of an experience sampling intervention for spousal carers of people with dementia: a secondary analysis using momentary data. Aging Ment Health. 2022;26(2):294-304. doi:10.1080/13607863.2020.1857692
43. van Knippenberg RJM, de Vugt ME, Ponds RW, Verhey FRJ, Myin-Germeys I. Emotional reactivity to daily life stress in spousal caregivers of people with dementia: An experience sampling study. PLoS ONE. 2018;13(4):e0194118. doi:10.1371/journal.pone.0194118
44. Goodridge D, Reis N, Neiser J, et al. An App-Based Mindfulness-Based Self-compassion Program to Support Caregivers of People With Dementia: Participatory Feasibility Study. JMIR Aging. 2021;4(4):e28652. doi:10.2196/28652
45. Schuler T, King C, Matsveru T, et al. Wearable-Triggered Ecological Momentary Assessments Are Feasible in People With Advanced Cancer and Their Family Caregivers: Feasibility Study from an Outpatient Palliative Care Clinic at a Cancer Center. J Palliat Med. 2023;26(7):980-985. doi:10.1089/jpm.2022.0535
46. Bosch L, Kanis M, Dunn J, Stewart KA, Kröse B. How is the caregiver doing? capturing caregivers’ experiences with a reflective toolkit. JMIR Ment Health. 2019;6(5):e13688. doi:10.2196/13688
47. Gleeson JFM, Koval P, Zyphur M, et al. A randomized controlled trial of moderated online social therapy for family carers of first-episode psychosis patients in a specialist treatment setting. Schizophr Res. 2023;255:203-212. doi:10.1016/j.schres.2023.03.019
48. Zawadzki MJ, Small AK, Mausbach BT. An upward cycle: examining bidirectional relationships between everyday activities and momentary affective well-being in caregivers. Journal of Positive Psychology. 2022;17(6):847-857. doi:10.1080/17439760.2021.1952646
49. Poulin MJ, Brown SL, Ubel PA, Smith DM, Jankovic A, Langa KM. Does a helping hand mean a heavy heart? Helping behavior and well-being among spouse caregivers. Psychology & Aging. 2010;25(1):108-117. doi:10.1037/a0018064
50. Shaffer KM, Chow PI, Glazer JV, et al. Feasibility of ecological momentary assessment to study depressive symptoms among cancer caregivers. Psychooncology. 2021;30(5):756-764. doi:10.1002/pon.5627
51. Pickering CEZ, Yefimova M, Maxwell C, Puga F, Sullivan T. Daily Context for Abusive and Neglectful Behavior in Family Caregiving for Dementia. Gerontologist. 2020;60(3):483-493. doi:10.1093/geront/gnz110
52. Fonareva I, Amen AM, Ellingson RM, Oken BS. Differences in stress-related ratings between research center and home environments in dementia caregivers using ecological momentary assessment. Int Psychogeriatr. 2011;24(1):90-98. doi:10.1017/s1041610211001414
53. Rullier L, Atzeni T, Husky M, et al. Daily life functioning of community-dwelling elderly couples: an investigation of the feasibility and validity of Ecological Momentary Assessment. Int J Methods Psychiatr Res. 2014;23(2):208-216. doi:10.1002/mpr.1425
54. Wuttke-Linnemann A, Henrici C, Skoluda N, Nater UM, Endres K, Fellgiebel A. Psychobiological Monitoring of a Home-Based Dyadic Intervention for People Living with Dementia and Their Caregivers: Added Value to Evaluate Treatment Success and Understand Underlying Mechanisms. J Alzheimers Dis. 2022;87(4):1725-1739. doi:10.3233/jad-210618
55. Wuttke-Linnemann A, Palm S, Geschke K, et al. Psychobiological evaluation of day clinic treatment for people living with dementia—Feasibility and pilot analyses. Frontiers in Aging Neuroscience. 2022;14(14). doi:10.3389/fnagi.2022.866437
56. Caplin A, Beauchamp MR, Weiss J, et al. Effects of Aerobic Exercise Training on Daily Psychological Processes in Family Caregivers: Secondary Analyses of a Randomized Controlled Trial. Affect Sci. 2021;2(1):48-57. doi:10.1007/s42761-020-00026-6
57. van Knippenberg RJM, de Vugt ME, Ponds RW, Myin-Germeys I, Verhey FRJ. An Experience Sampling Method Intervention for Dementia Caregivers: Results of a Randomized Controlled Trial. Am J Geriatr Psychiatry. 2018;26(12):1231-1243. doi:10.1016/j.jagp.2018.06.004
58. Alisic E, Barrett A, Bowles P, Conroy R, Mehl MR. Topical Review: Families Coping With Child Trauma: A Naturalistic Observation Methodology. J Pediatr Psychol. 2016;41(1):117-127. doi:10.1093/jpepsy/jsv016
59. LeBaron V, Alam R, Bennett R, et al. Deploying the Behavioral and Environmental Sensing and Intervention for Cancer Smart Health System to Support Patients and Family Caregivers in Managing Pain: Feasibility and Acceptability Study. JMIR Cancer. 2022;8(3):e36879. doi:10.2196/36879
60. Hektner J, Schmidt J, Csikszentmihalyi M. Experience Sampling Method: Measuring the Quality of Everyday Life. SAGE Publications; 2006. doi:10.4135/9781412984201
61. Jones A, Remmerswaal D, Verveer I, et al. Compliance with ecological momentary assessment protocols in substance users: a meta-analysis. Addiction. 2019;114(4):609-619. doi:10.1111/add.14503
62. Wen CKF, Schneider S, Stone AA, Spruijt-Metz D. Compliance with mobile ecological momentary assessment protocols in children and adolescents: A systematic review and meta-analysis. J Med Internet Res. 2017;19(4):e132. doi:10.2196/jmir.6641