Place4Carers: a mixed-method study protocol for engaging family caregivers in meaningful actions for successful ageing in place

Introduction Engaging family caregivers could be a critical asset to make the ‘ageing-in-place’ imperative a reality. This is particularly evident in rural and remote areas, where caregivers can fill the gaps that exist due to the fragmentation of the welfare system. However, there is little knowledge about the expectations that family caregivers have from healthcare services in rural and remote areas. Place4Carers (P4C) project aims to co-produce an innovative organisational model of social and healthcare services for family caregivers of older citizens living in Vallecamonica (Italy). The project is expected to facilitate ageing-in-place for older citizens, thus helping caregivers in their daily care activities. Methods and analysis P4C is a community-based participatory research project featuring five work packages (WPs). WP1 consists of a survey of unmet needs of caregivers and older people receiving services in Vallecamonica. WP2 consists of a scoping literature review to map services that provide interventions of support to caregivers living in remote areas and promote engagement. WP3 organises co-creation workshops with caregivers to co-design, co-manage, and co-assess ideas and proposals for shaping caregiver-oriented services and organisational models. WP3 enriches the results of WP1 (survey) and WP2 (scoping literature review), and aims to co-create new ideas for intervention support with and for caregivers in relation to the objectives, features and characteristics of a new service able to address the caregivers’ needs and expectations. WP4 tests the service ideas co-created in WP3 through piloting an intervention based on ideas co-created with caregivers. Finally, WP5 assesses the transferability of the intervention to other similar contexts. Ethics and dissemination The study has been approved by the Ethics Committees of the Department of Psychology of Università Cattolica del Sacro Cuore and Politecnico of Milan. Results will be disseminated through peer-reviewed journals, scientific meetings and meetings with the general population.

[1]  G. Graffigna,et al.  The Caregiving Health Engagement Scale (CHE-s): development and initial validation of a new questionnaire for measuring family caregiver engagement in healthcare , 2019, BMC Public Health.

[2]  H. Muurinen Service-user participation in developing social services: applying the experiment-driven approach , 2019 .

[3]  G. Graffigna,et al.  Supporting family caregiver engagement in the care of old persons living in hard to reach communities: A scoping review. , 2019, Health & social care in the community.

[4]  H. Inskip,et al.  A comparison of gender-linked population cancer risks between alcohol and tobacco: how many cigarettes are there in a bottle of wine? , 2019, BMC Public Health.

[5]  S. Baral,et al.  Determinants of access to HIV testing and counselling services among female sex workers in sub-Saharan Africa: a systematic review , 2019, BMC Public Health.

[6]  Janet Page-Reeves Community-Based Participatory Research for Health , 2018, Health promotion practice.

[7]  M. Tully,et al.  Coproduction for feasibility and pilot randomised controlled trials: learning outcomes for community partners, service users and the research team , 2018, Research Involvement and Engagement.

[8]  M. Goodman,et al.  Public Health Research Methods for Partnerships and Practice , 2017 .

[9]  V. Thompson,et al.  Community-based participatory research , 2017, QMiP Bulletin.

[10]  Yunan Chen,et al.  Senior Care for Aging in Place: Balancing Assistance and Independence , 2017, CSCW.

[11]  G. Guest,et al.  How Many Focus Groups Are Enough? Building an Evidence Base for Nonprobability Sample Sizes , 2017 .

[12]  T. S. Kaluzynski,et al.  Quality Dementia Care , 2017, Journal of applied gerontology : the official journal of the Southern Gerontological Society.

[13]  P. Bower,et al.  Patient activation in older people with long-term conditions and multimorbidity: correlates and change in a cohort study in the United Kingdom , 2016, BMC Health Services Research.

[14]  D. Blumenthal,et al.  Caring for High-Need, High-Cost Patients - An Urgent Priority. , 2016, The New England journal of medicine.

[15]  L. Provenzi,et al.  A Comparison of Maternal and Paternal Experiences of Becoming Parents of a Very Preterm Infant. , 2016, Journal of obstetric, gynecologic, and neonatal nursing : JOGNN.

[16]  Vicki A Freedman,et al.  A National Profile of Family and Unpaid Caregivers Who Assist Older Adults With Health Care Activities. , 2016, JAMA internal medicine.

[17]  P. Coyte,et al.  Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada. , 2015, Health & social care in the community.

[18]  A. Applebaum Isolated, invisible, and in-need: There should be no “I” in caregiver , 2015, Palliative and Supportive Care.

[19]  S. Triberti,et al.  Patient Engagement: A Consumer-Centered Model to Innovate Healthcare , 2015 .

[20]  V. Montori,et al.  Missed opportunity? Caregiver participation in the clinical encounter. A videographic analysis. , 2014, Patient education and counseling.

[21]  Shanthi Johnson,et al.  Healthy Aging in Place: Perceptions of Rural Older Adults , 2014 .

[22]  M. Hornbrook,et al.  Caregivers as healthcare managers: health management activities, needs, and caregiving relationships for colorectal cancer survivors with ostomies , 2014, Supportive Care in Cancer.

[23]  J. Protheroe,et al.  Patient empowerment in long-term conditions: development and preliminary testing of a new measure , 2013, BMC Health Services Research.

[24]  E. Gorus,et al.  The Active Ageing–concept translated to the residential long-term care , 2013, Quality of Life Research.

[25]  Mohamed Amin Embi,et al.  Evaluation of introduction to UNU-Casemix grouper & IT in Casemix system workshop for health staff in Indonesia , 2012, BMC Health Services Research.

[26]  Erin M. Macri,et al.  The de Morton Mobility Index: Normative Data for a Clinically Useful Mobility Instrument , 2012, Journal of aging research.

[27]  Knut Engedal,et al.  How do persons with dementia participate in decision making related to health and daily care? A multi-case study , 2012, BMC Health Services Research.

[28]  J. Wiles,et al.  Re-spacing and re-placing gerontology: relationality and affect , 2012, Ageing and Society.

[29]  K. Guo,et al.  The U.S. Long Term Care System: Development and Expansion of Naturally Occurring Retirement Communities as an Innovative Model for Aging in Place , 2012 .

[30]  Amanda J. Lehning,et al.  The "Village" model: a consumer-driven approach for aging in place. , 2012, The Gerontologist.

[31]  J. Wiles,et al.  The meaning of "aging in place" to older people. , 2012, The Gerontologist.

[32]  Nasir Umar,et al.  Outcomes associated with matching patients' treatment preferences to physicians' recommendations: study methodology , 2012, BMC Health Services Research.

[33]  Jon Pynoos,et al.  Aging in Place: Evolution of a Research Topic Whose Time Has Come , 2011, Journal of aging research.

[34]  J. Davitt,et al.  It Takes a Village: Community Practice, Social Work, and Aging-in-Place , 2011, Journal of gerontological social work.

[35]  P. Coyte,et al.  The Ambulatory and Home Care Record: A Methodological Framework for Economic Analyses in End-of-Life Care , 2011, Journal of aging research.

[36]  J. Warburton,et al.  Does place matter? Reviewing the experience of disadvantage for older people in rural Australia , 2011 .

[37]  Cheryl Tatano Beck,et al.  Generalization in quantitative and qualitative research: myths and strategies. , 2010, International journal of nursing studies.

[38]  Kristin N. Price,et al.  Forging an Identity: An Insider-outsider Study of Processes Involved in the Formation of Organizational Identity , 2010 .

[39]  Johnny Saldaña,et al.  The Coding Manual for Qualitative Researchers , 2009 .

[40]  D. Clark,et al.  The meaning and significance of self-management among socioeconomically vulnerable older adults. , 2008, The journals of gerontology. Series B, Psychological sciences and social sciences.

[41]  P. Coyte,et al.  Labor market work and home care's unpaid caregivers: a systematic review of labor force participation rates, predictors of labor market withdrawal, and hours of work. , 2007, The Milbank quarterly.

[42]  Anijo Punnen Mathew,et al.  Technology to Aid Aging in Place- New Opportunities and Challenges , 2007 .

[43]  P. Croft,et al.  Clinical multimorbidity and physical function in older adults: a record and health status linkage study in general practice. , 2007, Family practice.

[44]  John W. Creswell,et al.  Designing and Conducting Mixed Methods Research , 2006 .

[45]  C. Aneshensel,et al.  The role of family caregivers in HIV medication adherence , 2006, AIDS care.

[46]  David R. Thomas,et al.  A General Inductive Approach for Analyzing Qualitative Evaluation Data , 2006 .

[47]  J. Davey,et al.  "Ageing in Place": The Views of Older Homeowners on Maintenance, Renovation and Adaptation , 2006 .

[48]  S. Gates,et al.  Maximising response to postal questionnaires – A systematic review of randomised trials in health research , 2006, BMC medical research methodology.

[49]  Hsiu-Fang Hsieh,et al.  Three Approaches to Qualitative Content Analysis , 2005, Qualitative health research.

[50]  J. Wiles Conceptualizing place in the care of older people: the contributions of geographical gerontology. , 2005, Journal of clinical nursing.

[51]  C. Phillipson,et al.  Rural and urban perspectives on growing old: developing a new research agenda , 2005, European journal of ageing.

[52]  H. Arksey,et al.  Scoping studies: towards a methodological framework , 2005 .

[53]  K. Leichsenring,et al.  Developing integrated health and social care services for older persons in Europe , 2004, International journal of integrated care.

[54]  Gina Sylvestre,et al.  Social Isolation and Loneliness: Differences between Older Rural and Urban Manitobans* , 2004, Canadian Journal on Aging / La Revue canadienne du vieillissement.

[55]  I. Fabbricotti Integrated care in Europe: description and comparison of integrated care in six EU countries , 2003, International Journal of Integrated Care.

[56]  Meredith Minkler,et al.  Community-Based Participatory Research for Health , 2002 .

[57]  K. Kinsella,et al.  Urban and rural dimensions of global population aging: an overview. , 2001, The Journal of rural health : official journal of the American Rural Health Association and the National Rural Health Care Association.

[58]  G. Valentine Social Geographies: Space and Society , 2001 .

[59]  Edith D. de Leeuw,et al.  Reducing missing data in surveys: an overview of methods , 2001 .

[60]  G. Wenger,et al.  Myths and realities of ageing in rural Britain , 2001, Ageing and Society.

[61]  Elizabeth D. Mynatt,et al.  Increasing the opportunities for aging in place , 2000, CUU '00.

[62]  R. Schulz,et al.  Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. , 1999, JAMA.

[63]  Judith A. Hall,et al.  Effectiveness of interventions to improve patient compliance: a meta-analysis. , 1998, Medical care.

[64]  R. Yin The Case Study as a Serious Research Strategy , 1981 .

[65]  L. Provenzi,et al.  Caregiver Engagement in the Neonatal Intensive Care Unit: Parental Needs, Engagement Milestones, and Action Priorities for Neonatal Healthcare of Preterm Infants , 2016 .

[66]  G. Graffigna,et al.  The role of caregivers in the elderly healthcare journey: Insights for sustaining elderly patient engagement , 2016 .

[67]  E. Molinari,et al.  The Role of Psychogeriatrics in Healthy Living and Active Ageing. , 2014, Studies in health technology and informatics.

[68]  Albert Albers,et al.  Feasibility Studies in the Product Development Process , 2014 .

[69]  Stefania Passera,et al.  When, how, why prototyping? A practical framework for service development , 2012 .

[70]  B. R. Hasselkus,et al.  Everyday occupation, well-being, and identity: the experience of caregivers in families with dementia. , 2007, The American journal of occupational therapy : official publication of the American Occupational Therapy Association.

[71]  P. Commins Poverty and Social Exclusion in Rural Areas: Characteristics, Processes and Research Issues , 2004 .

[72]  S. Levkoff,et al.  Working with culture: A qualitative analysis of barriers to the recruitment of Chinese–American family caregivers for dementia research , 2000, Journal of cross-cultural gerontology.

[73]  Anselm L. Strauss,et al.  Basics of qualitative research : techniques and procedures for developing grounded theory , 1998 .

[74]  J. Aronson,et al.  The Retreat of the State and Long-Term Care Provision: Implications for Frail Elderly People, Unpaid Family Carers and Paid Home Care Workers , 1997 .

[75]  U. Bronfenbrenner Toward an Experimental Ecology of Human Development. , 1977 .

[76]  Javad Behboodian,et al.  Bmc Medical Research Methodology Open Access Sequential Boundaries Approach in Clinical Trials with Unequal Allocation Ratios , 2022 .