Supporting family caregiver engagement in the care of old persons living in hard to reach communities: A scoping review.
caregiver engagement
family engagement
hard to reach contexts
health
informal caregiving
rural areas
scoping review
Journal
Health & social care in the community
ISSN: 1365-2524
Titre abrégé: Health Soc Care Community
Pays: England
ID NLM: 9306359
Informations de publication
Date de publication:
11 2019
11 2019
Historique:
received:
07
04
2019
revised:
18
07
2019
accepted:
22
07
2019
pubmed:
24
8
2019
medline:
10
4
2020
entrez:
24
8
2019
Statut:
ppublish
Résumé
Today, 8.5% of the world's population is 65 and over, and this statistic will reach 17% by 2050 (He et al., U.S. Census Bureau, international population reports, P95/16-1, An ageing world: 2015, U.S., 2016). They are the people who, with increasing age, will find themselves more closely interfacing with the national health system, which in many countries shows strong imbalances between rural and urban areas. In this context, a fundamental role is played by the relatives who find themselves becoming informal caregivers to compensate for lack of services. To date, however, little has been done to help these people. In this article, we want to identify the nature and extent of research evidence that had its objective to help informal caregivers in rural, hard to reach areas (Grant & Booth, Health Information & Libraries Journal, 2009, 26, 91). Following the approach set out by Arksey and O'Malley (International Journal of Social Research Methodology, 2005, 8, 19), we conducted a scoping review in May 2018 and closed the review with an update in September 2018. We identified 14 studies published from 2012, the European Year of Active Ageing, promoted by the European Commission, which had three domains of implementation: emotional support to decrease the emotional burden of caregivers, educational support to increase their skills, and organisational support to improve the mobility of caregivers and carereceivers. Although informal caregivers play a fundamental role in many countries, the studies that have been involved in alleviating their caring burden are few; nevertheless, they provide interesting indications. This lack of attention confirms how this portion of the population is still neglected by scientific research and risks having unequal access to health and social care. Future research is needed, not only to create and improve services to caregivers in rural, hard to reach areas, but also to evaluate and focus on the participation and the engagement of caregivers in the co-design of these services.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
1363-1374Subventions
Organisme : Fondazione Cariplo
Pays : International
Informations de copyright
© 2019 John Wiley & Sons Ltd.
Références
Alves, S., Teixeira, L., Azevedo, M. J., Duarte, M., & Paúl, C. (2016). Effectiveness of a psychoeducational programme for informal caregivers of older adults. Scandinavian Journal of Caring Sciences, 30(1), 65-73. https://doi.org/10.1111/scs.12222
Arksey, H., & O’Malley, L. (2005). Scoping studies: Toward a methodological framework. International Journal of Social Research Methodology, 8(1), 19-32.
Bacsu, J., Jeffery, B., Abonyi, S., Johnson, S., Novik, N., Martz, D., & Oosman, S. (2014). Healthy aging in place: Perceptions of rural older adults. Educational Gerontology, 40(5), 327-337. https://doi.org/10.1080/03601277.2013.802191
Bakitas, M., Dionne-Odom, J. N., Jackson, L., Frost, J., Bishop, M. F., & Li, Z. (2017). There were more decisions and more options than just yes or no: Evaluating a decision aid for advanced cancer patients and their family caregivers. Palliative and Supportive Care, 15, 44-56. https://doi.org/10.1017/S1478951516000596
Banks, P. (2004). Policy framework for integrated care for older people. London, UK/Dublin, Ireland: King's Fund/EHMA.
Barello, S., & Graffigna, G. (2015). Engaging patients to recover life projectuality: An Italian cross-disease framework. Quality of Life Research, 24(5), 1087-1096. https://doi.org/10.1007/s11136-014-0846-x
Barello, S., Graffigna, G., Vegni, E., Savarese, M., Lombardi, F., & Bosio, A. C. (2015). ‘Engage me in taking care of my heart’: A grounded theory study on patient-cardiologist relationship in the hospital management of heart failure. British Medical Journal Open, 5(3), e005582. https://doi.org/10.1136/bmjopen-2014-005582
Barello, S., Savarese, M., & Graffigna, G. (2015). The role of caregivers in the elderly healthcare journey: Insights for sustaining elderly patient engagement. Patient Engagement: A consumer centered model to innovate healthcare, 108-119.
Bedard, M., Molloy, D. W., Squire, L., Dubois, S., Lever, J. A., & O’Donnell, M. (2001). The Zarit Burden interview: A new short version and screening version. The Gerontologist, 41(5), 652-657. https://doi.org/10.1093/geront/41.5.652
Blumenthal, D., Chernof, B., Fulmer, T., Lumpkin, J., & Selberg, J. (2016). Caring for high-need, high-cost patients-An urgent priority. New England Journal of Medicine, 375(10), 909-911. https://doi.org/10.1056/NEJMp1608511
Blusi, M., Asplund, K., & Jong, M. (2013). Older family carers in rural areas: Experiences from using caregiver support services based on Information and Communication Technology (ICT). European Journal of Ageing, 10, 191-199.
Blusi, M., Kristiansen, L., & Jong, M. (2015). Exploring the influence of Internet-based caregiver support on experiences of isolation for older spouse caregivers in rural areas: A qualitative interview study. International Journal of Older People Nursing, 10, 211-220. https://doi.org/10.1111/opn.12074
Boehmer, K. R., Egginton, J. S., Branda, M. E., Kryworuchko, J., Bodde, A., Montori, V. M., & LeBlanc, A. (2014). Missed opportunity? Caregiver participation in the clinical encounter. A video graphic analysis. Patient Education and Counseling, 96(3), 302-307. https://doi.org/10.1016/j.pec.2014.05.016
Bookman, A., & Harrington, M. (2007). Family caregivers: A shadow workforce in the geriatric health care system? Journal of Health Politics, Policy and Law, 32(6), 1005-1041. https://doi.org/10.1215/03616878-2007-040
Brackertz, N. (2007). Who is hard to reach and why? Working paper No. SISRQ/EL 06.07, pp. 1-7.
Burholt, V., & Dobbs, C. (2012). Research on rural ageing: Where have we got to and where are we going in Europe? Journal of Rural Studies, 28(4), 432-446.
Cohen-Mansfield, J., Marx, M., & Rosenthal, A. (1989). A description of agitation in a nursing home. The Journal of Gerontology, 44(3), M77-M84. https://doi.org/10.1093/geronj/44.3.M77
Coulter, A. (2012). Patient engagement-What works? The Journal of Ambulatory Care Management, 35(2), 80-89. https://doi.org/10.1097/JAC.0b013e318249e0fd
Danzl, M. M., Harrison, A., Hunter, E. G., Kuperstein, J., Sylvia, V., Maddy, K., & Campbell, S. (2016). “A lot of things passed me by”: Rural stroke survivors’ and caregivers’ experience of receiving education from health care providers. Journal of Rural Health, 32, 13-24.
Davey, J. (2006). "Ageing in place": The views of older homeowners on maintenance, renovation and adaptation. Social Policy Journal of New Zealand, 27, 128.
Devins, G. M., Mandin, H., Hons, R. B., Burgess, E. D., Klassen, J., Taub, K., … Buckle, S. (1990). Illness intrusiveness and quality of life in end-stage renal disease: Comparison and stability across treatment modalities. Health Psychology, 9, 117-142. https://doi.org/10.1037/0278-6133.9.2.117
Ekwall, A., Sivberg, B., & Hallberg, I. R. (2004). Dimensions of informal care and quality of life among elderly family caregivers. Scandinavian Journal of Caring Sciences, 18(3), 239-248. https://doi.org/10.1111/j.1471-6712.2004.00283.x
Eurostat. (2016). Population structure and ageing. Retrieved from http://ec.europa.eu/eurostat/statistics-explained/index.php?title=Population_structure_and_ageing/en;
Flanagan, S. M., & Hancock, B. (2010). Reaching the hard to reach - Lessons learned from the VCS (voluntary and community Sector): A qualitative study. BMC Health Services Research, 10(1), https://doi.org/10.1186/1472-6963-10-92
Forducey, P. G., Glueckauf, R. L., Bergquist, T. F., Maheu, M. M., & Yutsis, M. (2012). Telehealth for persons with severe functional disabilities and their caregivers: Facilitating self-care management in the home setting. Psychological Services., 9(2), 144-162. https://doi.org/10.1037/a0028112
Goldberg, D., & Hillier, V. (1979). A scaled version of the general health questionnaire. Psychological Medicine, 9, 139-145. https://doi.org/10.1017/S0033291700021644
Graffigna, G., & Barello, S. (2015). Innovating healthcare in the era of patient engagement: Challenges, opportunities, & new trends. Patient engagement: A consumer-centered model to innovate healthcare. In G. G., S. B., & S. T. (Eds.), Patient engagement: A consumer-centered model to innovate healthcare (Vol. 10). Berlin, Germany: De Gruyter Open, 9783110452440-002
Graffigna, G., & Barello, S. (2018a). Spotlight on the Patient Health Engagement model (PHE model): A psychosocial theory to understand people’s meaningful engagement in their own health care. Patient Preference and Adherence, https://doi.org/10.2147/PPA.S145646
Graffigna, G., & Barello, S. (2018b). Patient Health Engagement (PHE) model in enhanced recovery after surgery (ERAS): Monitoring patients’ engagement and psychological resilience in minimally invasive thoracic surgery. Journal of Thoracic Disease, 10, S517-S528. https://doi.org/10.21037/jtd.2017.12.84
Grant, M. J., & Booth, A. (2009). A typology of reviews: An analysis of 14 review types and associated methodologies. Health Information & Libraries Journal, 26, 91-108. https://doi.org/10.1111/j.1471-1842.2009.00848.x
Hasselkus, B. R. (1992). The meanings of activity: Day care for persons with Alzheimer Disease. The American Journal of Occupational Therapy, 46(3), 199-206.
Havens, B., Hall, M., Sylvestre, G., & Jivan, T. (2004). Social isolation and loneliness: Differences between older rural and urban Manitobans. Canadian Journal on Aging/la Revue Canadienne Du Vieillissement, 23(2), 129-140. https://doi.org/10.1353/cja.2004.0022
He, W., Goodkind, D., & Kowal, P. (2016). U.S. Census Bureau, international population reports, P95/16-1, An aging world: 2015, U.S. Washington, DC: Government Publishing Office.
Hewitt, M. E. (1989). Defining “rural” areas: Impact on health care policy and research. Washington, DC: DIANE Publishing.
Hicken, B. L., Daniel, C., Luptak, M., Grant, M., Kilian, S., & Rupper, R. W. (2017). Supporting Caregivers of Rural Veterans Electronically (SCORE). Journal of Rural Health, 33, 305-313. https://doi.org/10.1111/jrh.12195
Howden-Chapman, P., Signal, L., & Crane, J. (1999). Housing and health in older people: Ageing in place. Social Policy Journal of New Zealand, 14-30.
Jakovljevic, M. M., & Laaser, U. (2015). Population aging from 1950 to 2010 in seventeen transitional countries in the wider region of South Eastern Europe.
Johansson, M. (2014). Demographic trends in rural Europe. Territorial cohesion in rural Europe: The relational turn in rural development, 99-125.
Kaye, L. W., Crittenden, J. A., Kelly, N., & Boylan, D. (2014). Brief report #3: Building a rural community caregiver network: Student learning in small town America. Gerontology and Geriatrics Education, 35(3), 240-245. https://doi.org/10.1080/02701960.2014.921106
Kinney, J., & Stephens, M. (1989). Caregiving hassles scale: Assessing the daily hassles of caring for a family member with dementia. The Gerontologist, 29(3), 328-332. https://doi.org/10.1093/geront/29.3.328
Kinsella, K. (2001). Urban and rural dimensions of global population aging: An overview. The Journal of Rural Health, 17(4), 314-322. https://doi.org/10.1111/j.1748-0361.2001.tb00280.x
Kroenke, K., & Spitzer, R. L. (2002). The phq-9: A new depression diagnostic and severity measure. Psychiatric Annals, 32, 509-521. https://doi.org/10.3928/0048-5713-20020901-06
Kröger, T. (Ed.). (2003). Families, work and social care in Europe. Brussels, Belgium: European Commission.
Lamiani, G., Barello, S., Browning, D. M., Vegni, E., & Meyer, E. C. (2012). Uncovering and validating clinicians’ experiential knowledge when facing difficult conversations: A cross-cultural perspective. Patient Education and Counseling, 87(3), 307-312. https://doi.org/10.1016/j.pec.2011.11.012
Laranjeira, C. A. (2008). General health questionnaire-12 items: Adaptation study to the Portuguese population. Epidemiologia E Psichiatria Sociale, 17(2), 148-151. https://doi.org/10.1017/S1121189X00002840
Lau, R., & Morse, C. A. (2008). Health and wellbeing of older people in Anglo-Australian and Italian-Australian communities: A rural-urban comparison. Australian Journal of Rural Health, 16(1), 5-11. https://doi.org/10.1111/j.1440-1584.2007.00933.x
Lawton, M. P., Kleban, M. H., Moss, M., Rovine, M., & Glicksman, A. (1989). Measuring caregiving appraisal. The Journal of Gerontology, 44, P61-P71. https://doi.org/10.1093/geronj/44.3.P61
Lee, C. S., Vellone, E., Lyons, K. S., Cocchieri, A., Bidwell, J. T., D’Agostino, F., … Riegel, B. (2015). Patterns and predictors of patient and caregiver engagement in heart failure care: A multi-level dyadic study. International Journal of Nursing Studies, 52(2), 588-597. https://doi.org/10.1016/j.ijnurstu.2014.11.005
Leichsenring, K. (2004). Developing integrated health and social services for older persons in Europe. International Journal of Integrated Care, 4, e10.
Levine, C. (2016). Putting the spotlight on invisible family caregivers. JAMA Internal Medicine, 176(3), 380-381. https://doi.org/10.1001/jamainternmed.2015.8002
Lorig, K., Thompson-Gallagher, D., Traylor, L., Ritter, P. L., Laurent, D. D., Plant, K., … Hahn, T. J. (2012). Building better caregivers: A pilot online support workshop for family caregivers of cognitively impaired adults. Journal of Applied Gerontology, 31(3), 423-437. https://doi.org/10.1177/0733464810389806
Lundberg, S. (2014). The results from a two-year case study of an information and communication technology support system for family caregivers. Disability and Rehabilitation: Assistive Technology, 9(4), 353-358. https://doi.org/10.3109/17483107.2013.814170
Marcellini, F., Giuli, C., Gagliardi, C., & Papa, R. (2007). Aging in Italy: Urban-rural differences. Archives of Gerontology and Geriatrics, 44(3), 243-260. https://doi.org/10.1016/j.archger.2006.05.004
McKee, K. J., Philp, I., Lamura, G., Prouskas, C., Öberg, B., Krevers, B., … Szczerbinska, K. (2003). The COPE index-a first stage assessment of negative impact, positive value and quality of support of caregiving in informal carers of older people. Aging & Mental Health, 7, 39-52. https://doi.org/10.1080/1360786021000006956
Morycz, R. K. (1985). Caregiving strain and the desire to institutionalize family members with Alzheimer’s disease. Possible predictors and model development. Research on Aging, 7(3), 329-361. https://doi.org/10.1177/0164027585007003002
Moser, D. K., Riegel, B., McKinley, S., Doering, L. V., Meischke, H., Heo, S., … Dracup, K. (2009). The control attitudes scale-revised: Psychometric evaluation in three groups of patients with cardiac illness. Nursing Research, 58(1), 42-51. https://doi.org/10.1097/NNR.0b013e3181900ca0
Noel, M. A., Kaluzynski, T. S., & Templeton, V. H. (2017). Quality dementia care: Integrating caregivers into a chronic disease management model. Journal of Applied Gerontology, 36(2), 195-212. https://doi.org/10.1177/0733464815589986
Oudijk, D., de Boer, A., Woittiez, I., Timmermans, J., & de Klerk, M. (2010). Mantelzorg uit de doeken[Informal care explained]. Den Haag: Sociaal en Cultureel Planbureau.
Parks, S. M., & Novielli, K. D. (2000). A practical guide to caring for caregivers. American Family Physician, 62, 2613-2622.
Phillipson, C., & Scharf, T. (2005). Rural and urban perspectives on growing old: Developing a new research agenda. European Journal of Ageing, 2(2), 67-75. https://doi.org/10.1007/s10433-005-0024-7
Posner, B. M., Jette, A. M., Smith, K. W., & Miller, D. R. (1993). Nutrition and health risks in the elderly: The nutrition screening initiative. American Journal of Public Health, 83, 972-978. https://doi.org/10.2105/AJPH.83.7.972
Provenzi, L., Barello, S., Fumagalli, M., Graffigna, G., Sirgiovanni, I., Savarese, M., & Montirosso, R. (2016). A comparison of maternal and paternal experiences of becoming parents of a very preterm infant. Journal of Obstetric, Gynecologic & Neonatal Nursing, 45(4), 528-541. https://doi.org/10.1016/j.jogn.2016.04.004
Quam, L., Smith, R., & Yach, D. (2006). Rising to the global challenge of the chronic disease epidemic. The Lancet, 368(9543), 1221-1223. https://doi.org/10.1016/S0140-6736(06)69422-1
Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385-401. https://doi.org/10.1177/014662167700100306
Ratcliffe, M., Burd, C., Holder, K., & Fields, A. (2016). Defining rural at the U.S. census bureau. ACSGEO-1, U.S Census Bureau, Washington.
Rogers, S. A., Anthony, W., & Lyass, A. (2004). The nature and dimensions of social support among persons with severe mental illnesses. Community Mental Health Journal, 40, 437-450. https://doi.org/10.1023/B:COMH.0000040657.48759.0e
Roter, D. L., Hall, J. A., Merisca, R., Nordstrom, B., Cretin, D., & Svarstad, B. (1998). Effectiveness of interventions to improve patient compliance: A meta-analysis. Medical Care, 36, 1138-1161. https://doi.org/10.1097/00005650-199808000-00004
Scharlach, A., Li, W., & Dalvi, T. B. (2006). Family conflict as a mediator of caregiver strain. Family Relations, 55(5), 625-635. https://doi.org/10.1111/j.1741-3729.2006.00431.x
Schorch, M., Wan, L., Randall, D. W., & Wulf, V. (2016). Designing for those who are overlooked: Insider perspectives on care practices and cooperative work of elderly informal caregivers. In Association for Computing Machinery (ACM)(Ed.), Proceedings of the 19th ACM conference on computer-supported cooperative work & social computing (pp. 787-799). New York, NY: ACM.
Scott, T. L., Mittelman, M. S., Beattie, E., Parker, D., & Neville, C. (2015). Translating training in the NYU caregiver intervention in Australia: Maintaining fidelity and meeting graduate standards in an online continuing professional education setting. Educational Gerontology, 41(10), 710-722. https://doi.org/10.1080/03601277.2015.1048171
Shaghaghi, A., Bhopal, R. S., & Sheikh, A. (2011). Approaches to recruiting ‘hard-to-reach’ populations into research: A review of the literature. Health Promotion Perspectives, 1(2), 86-94.
Sixsmith, A., & Sixsmith, J. (2008). Ageing in place in the United Kingdom. Ageing International, 32(3), 219-235. https://doi.org/10.1007/s12126-008-9019-y
Sixsmith, J., Sixsmith, A., Fänge, A. M., Naumann, D., Kucsera, C., Tomsone, S., … Woolrych, R. (2014). Healthy ageing and home: The perspectives of very old people in five European countries. Social Science & Medicine, 106, 1-9. https://doi.org/10.1016/j.socscimed.2014.01.006
Srisuk, N., Cameron, J., Ski, C. F., & Thompson, D. R. (2017). Randomized controlled trial of family-based education for patients with heart failure and their carers. Journal of Advanced Nursing, 73(4), 857-870. https://doi.org/10.1111/jan.13192
Thornton, M., & Travis, S. S. (2003). Analysis of the reliability of the modified care-giver strain index. Journals of Gerontology: Social Sciences, 58B, S127-S132.
Triantafillou, J., Mestheneos, E., Troisi, J., & von Kondratowitz, H. J. (2013). The present and future health status of older people in the Mediterranean region. Ageing in the Mediterranean, 123-149.
U.S. Department of Commerce. (1985). National health interview survey. Washington, DC: Bureau of the Census.
van der Wal, M. H., Jaarsma, T., Moser, D. K., & van Veldhuisen, D. J. (2005). Development and testing of the Dutch heart failure knowledge scale. European Journal of Cardiovascular Nursing, 4(4), 273-277. https://doi.org/10.1016/j.ejcnurse.2005.07.003
Wakefield, B. J., & Vaughan-Sarrazin, M. (2017). Home telehealth and caregiving appraisal in chronic illness. Telemedicine and E-Health, 23(4), 282-289. https://doi.org/10.1089/tmj.2016.0105
Wallack, E. M., Harris, C., Ploughman, M., & Butler, R. (2018). Telegerontology as a Novel approach to address health and safety by supporting community-based rural dementia care triads: Randomized controlled trial protocol. JMIR Research Protocols, 7(2), e56. https://doi.org/10.2196/resprot.8744
Ware, J. Jr, Kosinski, M., & Keller, S. D. (1996). A 12-item short-form health survey: Construction of scales and preliminary tests of reliability and validity. Medical Care, 34(3), 220-233. https://doi.org/10.1097/00005650-199603000-00003
Wenger, G. C. (2001). Myths and realities of ageing in rural Britain. Ageing and Society, 21(01), 117-130. https://doi.org/10.1017/S0144686X01008042
Wolff, J. L., Spillman, B. C., Freedman, V. A., & Kasper, J. D. (2016). A national profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Internal Medicine, 176(3), 372-379. https://doi.org/10.1001/jamainternmed.2015.7664