Programmes Addressed to Informal Caregivers’ Needs: A Systematic Literature Review
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design, Protocol, and Registration
2.2. Eligibility Criteria
2.3. Data Source and Search Strategy
2.3.1. Data Sources
2.3.2. Search Strategy
2.4. Identification and Selection of Studies
2.5. Quality Appraisal
2.6. Strategy for Data Extraction and Data Synthesis
2.6.1. Data Extraction
2.6.2. Data Synthesis
3. Results
3.1. Description of Study Selection
3.2. Methodological Quality of Studies
3.3. Study Characteristics
3.4. Intervention Characteristics
3.5. Main Results of the Interventions
3.6. Type and Content of the Interventions
4. Discussion
Strengths and Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
- United Nations Department of Economic and Social Affairs; Population Division. World Social Report 2023: Leaving no One behind in an Ageing World; UN: New York, NY, USA, 2023.
- United Nations Department of Economic and Social Affairs; Population Division. World Population Ageing 2023: Challenges and Opportunities of Population Ageing in the Least Developed Countries; UN DESA/ POP/2023/TR/NO.5; United Nations: New York, NY, USA, 2023.
- Dogra, S.; Dunstan, D.W.; Sugiyama, T.; Stathi, A.; Gardiner, P.A.; Owen, N. Active Aging and Public Health: Evidence, Implications, and Opportunities. Annu. Rev. Public Health 2022, 43, 439–459. [Google Scholar] [CrossRef]
- European Commission. Ageing Europe—Statistics on Population Developments; Eurostat: Luxembourg, 2023.
- European Commission. Eurostat Regional Yearbook—2021 Edition; Eurostat: Luxembourg, 2021.
- Vos, E.E.; Hilderink, H.B.M.; de Bruin, S.R.; van der Beek, A.J.; Proper, K.I. The Working Informal Caregiver Model: A Mixed Methods Approach to Explore Future Informal Caregiving by Working Caregivers. Sustainability 2022, 14, 3519. [Google Scholar] [CrossRef]
- Chowdhury, S.R.; Chandra Das, D.; Sunna, T.C.; Beyene, J.; Hossain, A. Global and regional prevalence of multimorbidity in the adult population in community settings: A systematic review and meta-analysis. EClinicalMedicine 2023, 57, 101860. [Google Scholar] [CrossRef]
- Mazzuco, S.; Campostrini, S. Life expectancy drop in 2020. Estimates based on Human Mortality Database. PLoS ONE 2022, 17, e0262846. [Google Scholar] [CrossRef]
- Skirbekk, V.; Dieleman, J.L.; Stonawski, M.; Fejkiel, K.; Tyrovolas, S.; Chang, A.Y. The health-adjusted dependency ratio as a new global measure of the burden of ageing: A population-based study. Lancet Healthy Longev. 2022, 3, e332–e338. [Google Scholar] [CrossRef]
- Schulz, R.; Beach, S.R.; Czaja, S.J.; Martire, L.M.; Monin, J.K. Family Caregiving for Older Adults. Annu. Rev. Psychol. 2020, 71, 635–659. [Google Scholar] [CrossRef]
- Qin, Y.; Hao, X.; Lv, M.; Zhao, X.; Wu, S.; Li, K. A global perspective on risk factors for frailty in community-dwelling older adults: A systematic review and meta-analysis. Arch. Gerontol. Geriatr. 2023, 105, 104844. [Google Scholar] [CrossRef]
- Ferreira, B.; Diz, A.; Silva, P.; Sousa, L.; Pinho, L.; Fonseca, C.; Lopes, M. Bibliometric Analysis of the Informal Caregiver’s Scientific Production. J. Pers. Med. 2022, 12, 61. [Google Scholar] [CrossRef]
- Carboni-Jimenez, A.; Rice, D.B.; Levis, B.; Canedo-Ayala, M.; Imran, M.; Chiovitti, M.; Benedetti, A.; Thombs, B.D. Intensity of care and perceived burden among informal caregivers to persons with chronic medical conditions: A systematic review and meta-analysis. Disabil. Rehabil. 2022, 44, 6230–6246. [Google Scholar] [CrossRef]
- Moura, A.; Teixeira, F.; Amorim, M.; Henriques, A.; Nogueira, C.; Alves, E. A scoping review on studies about the quality of life of informal caregivers of stroke survivors. Qual. Life Res. 2022, 31, 1013–1032. [Google Scholar] [CrossRef]
- Calvo-Perxas, L.; Vilalta-Franch, J.; Litwin, H.; Turro-Garriga, O.; Mira, P.; Garre-Olmo, J. What seems to matter in public policy and the health of informal caregivers? A cross-sectional study in 12 European countries. PLoS ONE 2018, 13, e0194232. [Google Scholar] [CrossRef]
- Sandoval, F.; Tamiya, N.; Lloyd-Sherlock, P.; Noguchi, H. The relationship between perceived social support and depressive symptoms in informal caregivers of community-dwelling older persons in Chile. Psychogeriatrics 2019, 19, 547–556. [Google Scholar] [CrossRef]
- Sousa, L.; Gemito, L.; Ferreira, R.; Pinho, L.; Fonseca, C.; Lopes, M. Programs Addressed to Family Caregivers/Informal Caregivers Needs: Systematic Review Protocol. J. Pers. Med. 2022, 12, 145. [Google Scholar] [CrossRef]
- Sousa, L.M.M.; Firmino, C.F.; Marques-Vieira, C.M.A.; Severino, S.S.P.; Pestana, H.C.F.C. Scientific literature reviews: Types, methods and applications in nursing. Rev. Port. Enferm. Reabil. 2018, 1, 45–54. [Google Scholar] [CrossRef]
- Plothner, M.; Schmidt, K.; de Jong, L.; Zeidler, J.; Damm, K. Needs and preferences of informal caregivers regarding outpatient care for the elderly: A systematic literature review. BMC Geriatr. 2019, 19, 82. [Google Scholar] [CrossRef]
- Liu, Z.; Heffernan, C.; Tan, J. Caregiver burden: A concept analysis. Int. J. Nurs. Sci. 2020, 7, 438–445. [Google Scholar] [CrossRef]
- Stall, N.M.; Kim, S.J.; Hardacre, K.A.; Shah, P.S.; Straus, S.E.; Bronskill, S.E.; Lix, L.M.; Bell, C.M.; Rochon, P.A. Association of Informal Caregiver Distress with Health Outcomes of Community-Dwelling Dementia Care Recipients: A Systematic Review. J. Am. Geriatr. Soc. 2019, 67, 609–617. [Google Scholar] [CrossRef]
- Novais, T.; Dauphinot, V.; Krolak-Salmon, P.; Mouchoux, C. How to explore the needs of informal caregivers of individuals with cognitive impairment in Alzheimer’s disease or related diseases? A systematic review of quantitative and qualitative studies. BMC Geriatr. 2017, 17, 86. [Google Scholar] [CrossRef]
- Melnyk, B.M.; Fineout-Overholt, E.; Stetler, C.; Allan, J. Outcomes and implementation strategies from the first U.S. Evidence-Based Practice Leadership Summit. Worldviews Evid.-Based Nurs. 2005, 2, 113–121. [Google Scholar] [CrossRef]
- Page, M.J.; Moher, D.; Bossuyt, P.M.; Boutron, I.; Hoffmann, T.C.; Mulrow, C.D.; Shamseer, L.; Tetzlaff, J.M.; Akl, E.A.; Brennan, S.E.; et al. PRISMA 2020 explanation and elaboration: Updated guidance and exemplars for reporting systematic reviews. BMJ 2021, 372, n160. [Google Scholar] [CrossRef]
- Melnyk, B.M.; Fineout-Overholt, E. Evidence-Based Practice in Nursing & Healthcare: A Guide to Best Practice, 4th ed.; Wolters Kluwer/Lippincott Williams & Wilkins: Philadelphia, PA, USA, 2019. [Google Scholar]
- Barker, T.H.; Stone, J.C.; Sears, K.; Klugar, M.; Tufanaru, C.; Leonardi-Bee, J.; Aromataris, E.; Munn, Z. The revised JBI critical appraisal tool for the assessment of risk of bias for randomized controlled trials. JBI Evid. Synth. 2023, 21, 494–506. [Google Scholar] [CrossRef]
- Joanna Briggs Institute. JBI Levels of Evidence; The Joanna Briggs Institute: Adelaide, Australia, 2014. [Google Scholar]
- Camp, S.; Legge, T. Simulation as a tool for clinical remediation: An integrative review. Clin. Simul. Nurs. 2018, 16, 48–61. [Google Scholar] [CrossRef]
- Lucas, P.J.; Baird, J.; Arai, L.; Law, C.; Roberts, H.M. Worked examples of alternative methods for the synthesis of qualitative and quantitative research in systematic reviews. BMC Med Res. Methodol. 2007, 7, 4. [Google Scholar] [CrossRef]
- Joling, K.J.; Bosmans, J.E.; van Marwijk, H.W.; van der Horst, H.E.; Scheltens, P.; MacNeil Vroomen, J.L.; van Hout, H.P. The cost-effectiveness of a family meetings intervention to prevent depression and anxiety in family caregivers of patients with dementia: A randomized trial. Trials 2013, 14, 305. [Google Scholar] [CrossRef]
- Rodriguez-Sanchez, E.; Patino-Alonso, M.C.; Mora-Simon, S.; Gomez-Marcos, M.A.; Perez-Penaranda, A.; Losada-Baltar, A.; Garcia-Ortiz, L. Effects of a psychological intervention in a primary health care center for caregivers of dependent relatives: A randomized trial. Gerontologist 2013, 53, 397–406. [Google Scholar] [CrossRef]
- Ryynanen, O.P.; Nousiainen, P.; Soini, E.J.; Tuominen, S. Efficacy of a multicomponent support programme for the caregivers of disabled persons: A randomised controlled study. Z. Fur Gerontol. Geriatr. 2013, 46, 449–455. [Google Scholar] [CrossRef]
- Berwig, M.; Heinrich, S.; Spahlholz, J.; Hallensleben, N.; Brahler, E.; Gertz, H.J. Individualized support for informal caregivers of people with dementia—Effectiveness of the German adaptation of REACH II. BMC Geriatr. 2017, 17, 286. [Google Scholar] [CrossRef]
- Boots, L.M.; de Vugt, M.E.; Kempen, G.I.; Verhey, F.R. Effectiveness of a Blended Care Self-Management Program for Caregivers of People With Early-Stage Dementia (Partner in Balance): Randomized Controlled Trial. J. Med Internet Res. 2018, 20, e10017. [Google Scholar] [CrossRef]
- Wilz, G.; Reder, M.; Meichsner, F.; Soellner, R. The Tele.TAnDem Intervention: Telephone-based CBT for Family Caregivers of People With Dementia. Gerontologist 2018, 58, e118–e129. [Google Scholar] [CrossRef]
- Zwingmann, I.; Hoffmann, W.; Michalowsky, B.; Dreier-Wolfgramm, A.; Hertel, J.; Wucherer, D.; Eichler, T.; Kilimann, I.; Thiel, F.; Teipel, S.; et al. Supporting family dementia caregivers: Testing the efficacy of dementia care management on multifaceted caregivers’ burden. Aging Ment. Health 2018, 22, 889–896. [Google Scholar] [CrossRef] [PubMed]
- Behrndt, E.M.; Straubmeier, M.; Seidl, H.; Vetter, C.; Luttenberger, K.; Graessel, E. Brief telephone counselling is effective for caregivers who do not experience any major life events—Caregiver-related outcomes of the German day-care study. BMC Health Serv. Res. 2019, 19, 20. [Google Scholar] [CrossRef] [PubMed]
- Droes, R.M.; van Rijn, A.; Rus, E.; Dacier, S.; Meiland, F. Utilization, effect, and benefit of the individualized Meeting Centers Support Program for people with dementia and caregivers. Clin. Interv. Aging 2019, 14, 1527–1553. [Google Scholar] [CrossRef] [PubMed]
- Gaugler, J.E.; Zmora, R.; Mitchell, L.L.; Finlay, J.M.; Peterson, C.M.; McCarron, H.; Jutkowitz, E. Six-Month Effectiveness of Remote Activity Monitoring for Persons Living With Dementia and Their Family Caregivers: An Experimental Mixed Methods Study. Gerontologist 2019, 59, 78–89. [Google Scholar] [CrossRef] [PubMed]
- Milders, M.; Bell, S.; Lorimer, A.; Jackson, H.; McNamee, P. Improving access to a multi-component intervention for caregivers and people with dementia. Dementia 2019, 18, 347–359. [Google Scholar] [CrossRef] [PubMed]
- Schuit, A.S.; Rienks, M.M.; Hooghiemstra, N.; Jansen, F.; Lissenberg-Witte, B.I.; Cuijpers, P.; Verdonck-de Leeuw, I.M.; Holtmaat, K. Reach and efficacy of the eHealth application Oncokompas, facilitating partners of incurably ill cancer patients to self-manage their caregiver needs: A randomized controlled trial. Support. Care Cancer 2022, 30, 10191–10201. [Google Scholar] [CrossRef] [PubMed]
- Teles, S.; Ferreira, A.; Paul, C. Feasibility of an online training and support program for dementia carers: Results from a mixed-methods pilot randomized controlled trial. BMC Geriatr. 2022, 22, 173. [Google Scholar] [CrossRef] [PubMed]
- Baker, F.A.; Pac Soo, V.; Bloska, J.; Blauth, L.; Bukowska, A.A.; Flynn, L.; Hsu, M.H.; Janus, E.; Johansson, K.; Kvamme, T.; et al. Home-based family caregiver-delivered music and reading interventions for people living with dementia (HOMESIDE trial): An international randomised controlled trial. EClinicalMedicine 2023, 65, 102224. [Google Scholar] [CrossRef] [PubMed]
- Beentjes, K.M.; Neal, D.P.; Kerkhof, Y.J.F.; Broeder, C.; Moeridjan, Z.D.J.; Ettema, T.P.; Pelkmans, W.; Muller, M.M.; Graff, M.J.L.; Droes, R.M. Impact of the FindMyApps program on people with mild cognitive impairment or dementia and their caregivers; an exploratory pilot randomised controlled trial. Disabil. Rehabil. Assist. Technol. 2023, 18, 253–265. [Google Scholar] [CrossRef] [PubMed]
- Bielderman, A.; van Corven, C.T.M.; Koopmans, R.; Leontjevas, R.; de Vugt, M.E.; Bakker, C.; Gerritsen, D.L. Evaluation of the SPAN intervention for people living with young-onset dementia in the community and their family caregivers: A randomized controlled trial. Aging Ment. Health 2024, 28, 275–284. [Google Scholar] [CrossRef]
- Chiao, C.Y.; Wu, H.S.; Hsiao, C.Y. Caregiver burden for informal caregivers of patients with dementia: A systematic review. Int. Nurs. Rev. 2015, 62, 340–350. [Google Scholar] [CrossRef]
- Thana, K.; Lehto, R.; Sikorskii, A.; Wyatt, G. Informal caregiver burden for solid tumour cancer patients: A review and future directions. Psychol. Health 2021, 36, 1514–1535. [Google Scholar] [CrossRef] [PubMed]
- Wu, X.; Liang, Y.; Zheng, B.; Wang, H.; Ning, M.; Zheng, H.; Shi, B. Care stress in caregivers of disabled stroke patients: A cross-sectional survey. Ann. Palliat. Med. 2020, 9, 2211–2220. [Google Scholar] [CrossRef] [PubMed]
- Cross, A.J.; Garip, G.; Sheffield, D. The psychosocial impact of caregiving in dementia and quality of life: A systematic review and meta-synthesis of qualitative research. Psychol. Health 2018, 33, 1321–1342. [Google Scholar] [CrossRef] [PubMed]
- Riffin, C.; Van Ness, P.H.; Wolff, J.L.; Fried, T. Multifactorial Examination of Caregiver Burden in a National Sample of Family and Unpaid Caregivers. J. Am. Geriatr. Soc. 2019, 67, 277–283. [Google Scholar] [CrossRef] [PubMed]
- Verbakel, E.; Tamlagsronning, S.; Winstone, L.; Fjaer, E.L.; Eikemo, T.A. Informal care in Europe: Findings from the European Social Survey (2014) special module on the social determinants of health. Eur. J. Public Health 2017, 27, 90–95. [Google Scholar] [CrossRef] [PubMed]
- Panzeri, A.; Rossi Ferrario, S.; Vidotto, G. Interventions for Psychological Health of Stroke Caregivers: A Systematic Review. Front. Psychol. 2019, 10, 2045. [Google Scholar] [CrossRef] [PubMed]
- Cheng, S.T.; Zhang, F. A comprehensive meta-review of systematic reviews and meta-analyses on nonpharmacological interventions for informal dementia caregivers. BMC Geriatr. 2020, 20, 137. [Google Scholar] [CrossRef] [PubMed]
- Foust, J.B.; Vuckovic, N.; Henriquez, E. Hospital to home health care transition: Patient, caregiver, and clinician perspectives. West. J. Nurs. Res. 2012, 34, 194–212. [Google Scholar] [CrossRef]
- Cano, F.; Alves, E.; João, A.; Oliveira, H.; Pinho, L.G.; Fonseca, C. A rapid literature review on the health-related outcomes of long-term person-centered care models in adults with chronic illness. Front. Public Health 2023, 11, 1213816. [Google Scholar] [CrossRef]
- Gilhooly, K.J.; Gilhooly, M.L.; Sullivan, M.P.; McIntyre, A.; Wilson, L.; Harding, E.; Woodbridge, R.; Crutch, S. A meta-review of stress, coping and interventions in dementia and dementia caregiving. BMC Geriatr. 2016, 16, 106. [Google Scholar] [CrossRef]
- Brooks, D.; Fielding, E.; Beattie, E.; Edwards, H.; Hines, S. Effectiveness of psychosocial interventions on the psychological health and emotional well-being of family carers of people with dementia following residential care placement: A systematic review. JBI Database Syst. Rev. Implement Rep. 2018, 16, 1240–1268. [Google Scholar] [CrossRef] [PubMed]
- Uhm, K.E.; Jung, H.; Woo, M.W.; Kwon, H.E.; Oh-Park, M.; Lee, B.R.; Kim, E.J.; Kim, J.H.; Lee, S.A.; Lee, J. Influence of preparedness on caregiver burden, depression, and quality of life in caregivers of people with disabilities. Front. Public Health 2023, 11, 1153588. [Google Scholar] [CrossRef] [PubMed]
- Bhattacharyya, K.K.; Liu, Y.; Gothe, N.P.; Fauth, E.B. Mind-Body Practice and Family Caregivers’ Subjective Well-Being: Findings From the Midlife in the United States (MIDUS) Study. Gerontol. Geriatr. Med. 2023, 9, 23337214231185912. [Google Scholar] [CrossRef] [PubMed]
- Greenwood, N.; Habibi, R.; Smith, R.; Manthorpe, J. Barriers to access and minority ethnic carers’ satisfaction with social care services in the community: A systematic review of qualitative and quantitative literature. Heal. Soc. Care Community 2015, 23, 64–78. [Google Scholar] [CrossRef] [PubMed]
- Duong, S.; Patel, T.; Chang, F. Dementia: What pharmacists need to know. Can. Pharm. J. 2017, 150, 118–129. [Google Scholar] [CrossRef] [PubMed]
- Juul, S.; Gluud, C.; Simonsen, S.; Frandsen, F.W.; Kirsch, I.; Jakobsen, J.C. Blinding in randomised clinical trials of psychological interventions: A retrospective study of published trial reports. BMJ Evid.-Based Med. 2021, 26, 109. [Google Scholar] [CrossRef] [PubMed]
- Friedberg, J.P.; Lipsitz, S.R.; Natarajan, S. Challenges and recommendations for blinding in behavioral interventions illustrated using a case study of a behavioral intervention to lower blood pressure. Patient Educ. Couns. 2010, 78, 5–11. [Google Scholar] [CrossRef] [PubMed]
- Salloum, R.G.; Rojewski, A.M.; Piper, M.E.; Blalock, J.A.; Borrelli, B.; Boyce, L.M.; Minnix, J.A.; Dogar, O.; Tomko, R.L.; Jorenby, D.E.; et al. Reporting Treatment Fidelity in Behavioral Tobacco Treatment Clinical Trials: Scoping Review and Measurement Recommendations. Nicotine Tob. Res. 2022, 24, 150–159. [Google Scholar] [CrossRef] [PubMed]
- Shojania, K.G.; Sampson, M.; Ansari, M.T.; Ji, J.; Doucette, S.; Moher, D. How quickly do systematic reviews go out of date? A survival analysis. Ann. Intern. Med. 2007, 147, 224–233. [Google Scholar] [CrossRef]
- Guyatt, G.; Rennie, D.; Meade, M.O.; Cook, D.J. Users’ Guides to the Medical Literature: A Manual for Evidence-Based Clinical Practice, 3rd ed.; McGraw Hill: New York, NY, USA, 2015. [Google Scholar]
- Vlokhoven, H. The effect of open access on research quality. J. Informetr. 2019, 13, 751–756. [Google Scholar] [CrossRef]
PICOD | Inclusion Criteria | Exclusion Criteria | |
---|---|---|---|
P | Population | (1) Informal caregivers defined as family members, friends, or any unpaid person providing or assisting patients without a background of formal medical education; (2) Patients aged 18 years old or above; (3) Informal caregivers of adults with dependence for daily life activities; (4) Community setting. | (1) Studies focusing on formal caregivers; (2) Studies focusing on children or adolescents; (3) Studies focusing on adults without dependence for daily life activities; (4) Institutional settings. |
I | Intervention | (1) Programmess addressing informal caregivers needs to improve their experiences, health and well-being. | (1) Programmess not addressing informal caregivers’ needs. |
C | Comparison | (1) Intervention with a control group receiving standard care, no intervention, or placebo. | (1) Intervention without a control group. |
O | Outcome | (1) Health gains for the person being cared for, the informal caregiver, or the health system. | (1) Studies that did not report data on health gains. |
D | Study Design | (1) Randomized controlled trial studies. | (1) Observational studies; (2) Nonoriginal studies (reviews, meta-analyses, study protocols, commentary, editorials, journal articles, conference proceedings and abstracts, reports, guidelines and grey literature and scale validations). |
Publication | JBI Critical Appraisal Checklist for Randomized Controlled Trials [26] | Evidence Level [27] | |||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | 13 | Total | ||
Joling et al., 2013 [30] | 1 | 1 | 1 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 11/13 (85%) | 1.c |
Rodriguez-Sanchez et al., 2013 [31] | 1 | 1 | 1 | 0 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 10/13 (76%) | 1.c |
Ryynänen et al., 2013 [32] | 1 | 0 | 1 | 0 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 9/13 (70%) | 1.c |
Berwig et al., 2017 [33] | 1 | 1 | 1 | 0 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 10/13 (76%) | 1.c |
Boots et al., 2018 [34] | 1 | 1 | 1 | 1 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 12/13 (92%) | 1.c |
Wilz et al., 2018 [35] | 1 | 1 | 1 | 0 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 10/13 (76%) | 1.c |
Zwingmann et al., 2018 [36] | 1 | 1 | 1 | 0 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 10/13 (76%) | 1.c |
Behrndt et al., 2019 [37] | 1 | 1 | 1 | 1 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 11/13 (85%) | 1.c |
Dröes et al., 2019 [38] | 1 | 1 | 1 | 0 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 10/13 (76%) | 1.c |
Gaugler et al., 2019 [39] | 1 | 1 | 1 | 0 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 10/13 (76%) | 1.c |
Milders et al., 2019 [40] | 1 | 1 | 1 | 0 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 10/13 (76%) | 1.c |
Schuit et al., 2022 [41] | 1 | 0 | 1 | 0 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 9/13 (70%) | 1.c |
Teles et al., 2022 [42] | 1 | 1 | 1 | 0 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 10/13 (76%) | 1.c |
Baker et al., 2023 [43] | 1 | 1 | 1 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 11/13 (85%) | 1.c |
Beentjes et al., 2023 [44] | 1 | 1 | 1 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 11/13 (85%) | 1.c |
Bielderman et al., 2024 [45] | 1 | 1 | 1 | 0 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 10/13 (76%) | 1.c |
100% | 88% | 100% | 13% | 0% | 25% | 100% | 100% | 100% | 100% | 100% | 100% | 100% |
Publication | Country | Period of Data Collection | Participants and Sample | Intervention | Outcomes (Instruments) | Main Results |
---|---|---|---|---|---|---|
Joling et al., 2013 [30] | The Netherlands | November 2007–November 2009 (12-month intervention period) | Family caregivers of patients with dementia (n = 192) | Family meeting intervention vs. Usual care | Caregiver and patient:
|
|
Rodriguez-Sanchez et al., 2013 [31] | Spain | July 2008–November 2009 (3-week intervention period) | Family caregivers of relatives with dependence for daily life activities (n = 125) | Cognitive–behavioural treatment for managing dysfunctional thoughts about caregiving and training in self-help techniques vs. Usual care | Caregiver:
|
|
Ryynänen et al., 2013 [32] | Finland | February 2003–April 2004 (2-week intervention period) | Caregivers of people with disability (n = 135) | Tailored multicomponent support intervention vs. Usual care | Caregiver:
|
|
Berwig et al., 2017 [33] | Germany | Not reported (6-month intervention period) | Informal caregivers of people with dementia (n = 92) | Individualized, psychoeducational, and skills-training evidence-based multicomponent intervention vs. Usual care | Caregiver:
|
|
Boots et al., 2018 [34] | The Netherlands | September 2014–December 2015 (8-week intervention period) | Family caregivers of community-dwelling people with mild dementia (n = 81) | Self-management partner in balance programme vs. Usual care | Caregiver:
|
|
Wilz, 2018 [35] | Germany | January 2012–November 2013 (6-month intervention period) | Family caregivers of people with dementia (n = 273) | Telephone-based cognitive–behavioural therapy vs. Usual care | Caregiver:
|
|
Zwingmann et al., 2018 [36] | Germany | January 2012–December 2014 (12-month intervention period) | Caregivers of community-dwelling people with dementia (n = 317) | Dementia care management vs. Usual care | Caregiver:
|
|
Behrndt et al., 2019 [37] | Germany | October 2014–March 2017 (6-month intervention period) | Informal caregivers of persons with cognitive impairment (n = 359) | Brief telephone intervention vs. Usual care | Caregiver:
|
|
Dröes et al., 2019 [38] | The Netherlands | 2016–2019 (6-month intervention period) | Informal caregivers of people with dementia (n = 282) | Individualized Meeting Centres Support Programme (iMCSP) vs. Regular MCSP and no day care support | Caregiver:
|
|
Gaugler et al., 2019 [39] | USA | November 2017–June 2018 (6-month intervention period) | Family caregivers of persons living with Alzheimer’s disease or a related dementia (n = 132) | Remote activity monitoring (RAM) system vs. Usual care | Caregiver:
|
|
Milders et al., 2019 [40] | UK | Not reported (3-month intervention period) | Informal caregivers of persons with dementia (n = 30) | Multicomponent nonpharmacological intervention vs. Usual care followed by delayed treatment | Caregiver:
|
|
Schuit et al., 2022 [41] | The Netherlands | March 2019–August 2020 (3-month intervention period) | Partners of incurably ill cancer patients (n = 58) | eHealth self-management application Oncokompas vs. Usual care | Caregiver:
|
|
Teles et al., 2022 [42] | Portugal | March–May 2020 (6-month intervention period) | Informal caregivers of patients with dementia (n = 42) | Online training and support programme (iSupport-Portugal) vs. Education-only e-book | Caregiver:
|
|
Baker et al., 2023 [43] | Australia, Germany, Norway, Poland and the UK | November 2019–July 2022 (12-week intervention period) | Cohabiting caregivers of persons with a diagnosis of dementia (n = 432) | Music intervention vs. Reading intervention vs. Usual care | Caregiver:
|
|
Beentjes et al., 2023 [44] | The Netherlands | September 2018–January 2020 (3-month intervention period) | Informal caregivers of persons with mild cognitive impairment or dementia (n = 59) | Training to use a tablet and FindMyApps vs. Tablet without FindMyApps | Caregiver:
|
|
Bielderman et al., 2024 [45] | The Netherlands | November 2016–March 2018 (18-week intervention period) | Family caregivers of people living with young-onset dementia (n = 60) | SPAN intervention vs. Usual care | Caregiver:
|
|
Direct Association | Inverse Association | No Association | |
---|---|---|---|
Caregiver | |||
Quality of life | ✓✓✓ [33,34,42] | ✓ [43] | ✓✓✓✓✓✓✓✓ [30,31,32,37,38,40,41,45] |
Psychological symptomatology 1 | ✓✓✓✓✓ [31,35,37,42,43] | ✓✓✓✓✓✓ [30,32,33,34,39,45] | |
Mental health 2 | ✓✓✓ [31,35,38] | ✓ [33] | |
Burden | ✓✓✓ [33,36,37] | ✓✓✓✓✓✓✓ [31,35,38,40,41,42,45] | |
Self-efficacy 3 | ✓✓✓ [34,40,43] | ✓✓✓✓✓✓ [38,39,41,42,44,45] | |
Coping strategies 4 | ✓ [35] | ✓✓ [37,44] | |
Physical health symptoms | ✓ [35] | ||
Quality-adjusted life years | ✓ [30] | ||
Caregiver–care relationship 5 | ✓ [32,33] | ✓ [43] | |
Socioemotional support | ✓ [39] | ||
Patient | |||
Quality of life | ✓✓✓✓✓✓ [30,38,40,43,44,45] | ||
Psychological well-being 1 | ✓✓✓✓ [30,40,43,45] | ||
Quality-adjusted life years | ✓ [30] | ||
Neuropsychiatric symptoms | ✓ [38] | ✓✓ [43,45] | |
Self-efficacy 6 | ✓✓✓ [38,44,45] | ||
Cognition | ✓ [43] | ||
Social participation | ✓ [44] | ||
Health system | |||
Costs 7 | ✓✓ [30,40] |
Type of Intervention | Dimensions |
---|---|
Caregiver monitoring |
|
Management of older persons’ care | |
Training/Education |
|
Cognitive–behavioural strategies |
|
Social support | |
Physical activity and monitoring |
Disclaimer/Publisher’s Note: The statements, opinions and data contained in all publications are solely those of the individual author(s) and contributor(s) and not of MDPI and/or the editor(s). MDPI and/or the editor(s) disclaim responsibility for any injury to people or property resulting from any ideas, methods, instructions or products referred to in the content. |
© 2024 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Gemito, L.; Alves, E.; Moreira, J.; Marques, M.F.; Caldeira, E.; Ferreira, R.; Bico, I.; Pinho, L.; Fonseca, C.; Sousa, L.; et al. Programmes Addressed to Informal Caregivers’ Needs: A Systematic Literature Review. Geriatrics 2024, 9, 71. https://doi.org/10.3390/geriatrics9030071
Gemito L, Alves E, Moreira J, Marques MF, Caldeira E, Ferreira R, Bico I, Pinho L, Fonseca C, Sousa L, et al. Programmes Addressed to Informal Caregivers’ Needs: A Systematic Literature Review. Geriatrics. 2024; 9(3):71. https://doi.org/10.3390/geriatrics9030071
Chicago/Turabian StyleGemito, Laurência, Elisabete Alves, José Moreira, Maria Fátima Marques, Ermelinda Caldeira, Rogério Ferreira, Isabel Bico, Lara Pinho, César Fonseca, Luís Sousa, and et al. 2024. "Programmes Addressed to Informal Caregivers’ Needs: A Systematic Literature Review" Geriatrics 9, no. 3: 71. https://doi.org/10.3390/geriatrics9030071