The Umeå ageing and health research programme (U-Age): Exploring person-centred care and health-promoting living conditions for an ageing population

Abstract

The aim of this article is to describe the Umeå ageing and health research programme that explores person-centred care and health-promoting living conditions for an ageing population in Sweden, and to place this research programme in a national and international context of available research evidence and trends in aged care policy and practice. Contemporary trends in aged care policy includes facilitating ageing in place and providing person-centred care across home and aged care settings, despite limited evidence on how person-centred care can be operationalised in home care services and sheltered housing accommodation for older people. The Umeå ageing and health research programme consists of four research projects employing controlled, cross-sectional and longitudinal designs across ageing in place, sheltered housing, and nursing homes. The research programme is expected to provide translational knowledge on the structure, content and outcomes of person-centred care and health-promoting living conditions in home care, sheltered housing models, and nursing homes for older people and people with dementia.

Keywords

health home care services housing for the elderly nursing homes residential facilities sheltered housing

Introduction

Person-centred care is a concept vividly present in the academic literature, and commonly described as a philosophy and/or model of care that aims to acknowledge, involve and build upon the subjective experiences of the person in need of care and support and this person’s current preferences, priorities, values and needs. Person-centred care builds on a fundamental human relational ethic, and is increasingly emphasised in aged care policies and national guidelines to promote health in old age across Scandinavia, Europe, the US, Australia and beyond. However, a majority of the research on person-centred aged care has been conducted in institutional settings such as hospitals or, to a lesser extent, nursing homes. In regard to person-centred care for older people and people with dementia who are ageing in place and may receive home care services, there remain substantial knowledge gaps in the academic literature as well as in practice. Even if previous research and some practice initiatives have outlined parts of the ethics, processes and outcomes of person-centred care of older people and people with dementia, it is still not fully clear how to operationalise and implement this in home care settings and sheltered housing, and the extent to which such interventions actually are perceived to improve older people’s living conditions and facilitate health and wellbeing.

Background

A rapidly increasing ageing population and the consequential long-term burden imposed on aged care systems has established provision of cost-effective and high quality care of older people as one of the major challenges of this century. Adding to this challenge is the increasing prevalence of older people with dementia¹ that leads to individual suffering,^2,3 as well as greater worldwide costs for institutional aged care.^1,4 Older people may experience difficulties engaging in daily activities,⁵ family caregivers may struggle to support their relatives,^6,7 and aged care staff have a difficult and demanding job that can be limited by task-oriented expectations on providing basic physical care.^8–10

A recent person-centred nursing home intervention showed that an interactive and step-wise action-research intervention to facilitate person-centred care through a process of knowledge translation, generation, and dissemination increased the person-centeredness of care practice, increased the perceived hospitality of the setting, and enabled staff to provide the care and activities they wanted to provide which they perceived as enabling a good life.¹¹ There are a number of other intervention studies in aged care that explore various effects of person-centred interventions on residents and care staff. For residents, previous studies have reported increased wellbeing and reduced agitation for people with dementia following meaningful activities and psychosocial interactions,^12,13 increased wellbeing, and fewer symptoms of depression,¹⁴ as well as improved bowel patterns for residents after individualised care management.¹⁵ For direct care staff, there is evidence that person-centred interventions could decrease job stress and strain as well as increase personal and professional satisfaction,^16–18 and could reduce the symptoms of burnout.¹⁹ However, it is somewhat challenging to interpret and synthesise this evidence on the effects of providing person-centred care in different contexts. Firstly, what actually comprises the person-centred components is not always clear across different intervention studies. Different studies have targeted quite different and specific aspects of person-centeredness, for example as person-centred interventions to improve resident bowel patterns,¹⁵ and to improve care staff communication skills.¹⁹ The synthesis of evidence is also complicated by a shortness of empirical data to support that care practice was actually experienced as becoming more person-centred post intervention. Commonly, the black-box logic applies in interventions, in that if outcomes were improved at follow-up the conclusion is that the intervention increased the person-centeredness of care. There is also limited evidence on how to implement existing evidence and guidelines on person-centred care in practice. So it is a reasonable interpretation of the existing literature that further exploration is needed on the influence of person-centred care models and health-promoting living conditions on the wellbeing of older people, family caregivers, and aged care staff across the continuum of settings in which aged care is provided.

Older people often spend an increasing amount of time within or close to the home as a result of limited mobility, cognitive decline and/or loss of social networks.²⁰ Ageing in one’s own home is generally described as something positive,^21,22 and a common goal of support provided to older people is to facilitate the possibility to maintain independence and remain in their own home for as long as possible. In Sweden, all community-dwelling older people have the right to receive home care services such as meals on wheels, assistance with grocery shopping, cleaning, personal care or transportation. However, even though home care services are to be based on each individual person’s needs, there is research to indicate that current home care services to older people are largely traditional in focusing on assisting with basic activities of daily living as well as meeting physical and biomedical needs.^23–27 This approach has been critiqued for not being contemporary and person-centred, as older people living at home report a high prevalence of unmet psychosocial needs such as attachment, social inclusion and meaningful social activities.^23–27 Thus, home care services could benefit from increasingly becoming person-centred and responding to a more multi-dimensional needs analysis in partnership with the older person and family members.

Even though remaining in one’s own home for as long as possible is a common goal for older people,^28,29 increasing need for professional support can make this unachievable. In Sweden, for older people who do not wish to remain living in their own housing, but who are ineligible for nursing home care, there is a new form of sheltered housing called ‘Trygghetsboende’.³⁰ This sheltered housing model is an umbrella term to indicate facilities devoted to people older than 65 years, providing physical accessibility, possibilities for social activities and psychosocial support, as well as traditional home care services. These sheltered housing facilities are commonly marketed as beneficial to health and quality of life compared to ageing in place, by providing a peer-to-peer community and everyday support from professional care staff. Further, this sheltered housing model is described as a health-promoting housing arrangement,³¹ despite limited research evidence. This means that further data is needed on what characterises these sheltered housing models and the extent to which they are associated with positive outcomes in older people in Sweden and how comparable they are in an international context.

For older people in need of high levels of support and professional care, nursing home care is a common option. Previous research has described a growing concern within the aged care workforce, as evidenced by high turnover rates and labour shortages within the nursing home sector.^31,32 In addition, demographic trends also suggest that a high increase in demand for nursing home care is unlikely to be matched by a total number of available skilled staff working in nursing homes.^33–36 Consequently, there are challenges in terms of maintaining quality, attracting and sustaining a competent and stable aged care workforce, and in terms of how this workforce can be supported in providing care and support for older people that maximises their possibilities to be healthy and thrive,³⁷ as well as for family members to feel satisfied with care and staff members to feel pride and satisfaction in their important work.^31,32 Another concern is that even though substantial costs are spent on nursing home care in the Scandinavian countries, there has been a limited amount of valid and reliable, nationally representative data on the extent to which residents can engage in meaningful activities and experience health and thriving, as well as the extent to which family members and staff can experience a sense of satisfaction with care and work.

In summary, there remain gaps in the knowledge on how to operationalise person-centred care and create health-promoting living conditions for older people across the continuum of home care, sheltered housing and institutional aged care settings, as well as on the continuum of levels of physical frailty and cognitive function. The Umeä ageing and health research programme (U-Age) was initiated to explore the characteristics and outcomes of such housing models for older people and people with dementia, as well as to explore content, meanings and outcomes of person-centred models of care in home care, sheltered housing and nursing homes. The research programme consists of four projects designed to provide experimental, cross-sectional and longitudinal data on these different types of housing models and person-centred care interventions. The aims and research questions for the four projects are as follows:

U-Age Home Care aims to evaluate the effects and meanings of person-centred home care services from the perspective of older people, family caregivers and home care service staff. The main research question is the extent to which a person-centred and health-promoting home care intervention can result in better health, thriving, and satisfaction with care, compared to traditional home care services.

U-Age TryBo aims to compare characteristics and health outcomes between sheltered housing for older people and ageing in place. The main research question is the extent to which sheltered housing for older people facilitates older people’s health, thriving and quality of life compared to ageing in place?

U-Age Nursing Home aims to evaluate the effects, meaning and significance of a person-centred and thriving-promoting intervention in nursing homes. The main research question is whether a person-centred and thriving-promoting care model for nursing homes can increase thriving for residents, satisfaction with care for relatives, and job satisfaction for staff.

U-Age Svenis aims to initiate longitudinal monitoring of care and health in Swedish nursing homes. The main research question is what are the prevalence of symptoms, involvement in daily activities quality of life and thriving for older people in Swedish nursing homes, as well as what are the characteristics and experiences of care provision and structure in a nationally representative sample of Swedish nursing homes.

Methods

The research programme has a multi-methods approach, utilising experimental, explorative, descriptive and interpretive research designs.

U-Age Home Care

A non-randomised controlled trial with before-and-after design will be used in this study to determine the effects of person-centred home care service on: a) older people’s perceived health status (primary endpoint), thriving, and satisfaction with care (secondary endpoints); b) family caregiver’s strain, resource utilisation and care satisfaction (secondary endpoints); and c) stress of conscience and job satisfaction among care staff (secondary endpoints).

Older people who have been assessed for and granted home care services will be allocated to the study intervention or control arm. The intervention arm involves creating a person-centred home care service that builds on substantial care-recipient involvement. The intervention consists of staff education and reflective supervision together with conversational needs analyses in partnership with the older person and his/her family members. The conversational needs analyses will involve a dialogue between staff, the older person and family members with the purpose of analysing and prioritising how their current home care can be revised to maximise their quality of life and satisfaction. This can for example mean that instead of shopping for the older person, home care staff can go shopping with the person, or assist with maintaining a social engagement, a meaningful activity or providing psychosocial support and/or presence if this is what the person feels will be most beneficial to his/her quality of life. The control arm involves receiving standard home care services with activities of daily living, physical and biomedical needs.

Sample size calculations for the primary endpoint perceived health status³⁸ indicate that a sample of n = 300 will provide 85% power at the 0.05 significance level to detect mean differences based on previously reported results.³⁹ Further power calculations indicate that this sample size will also provide power to detect significant differences for the secondary endpoints. At baseline, all participants in both the intervention and control arm will be asked to complete a study survey with demographic characteristics, assessment of cognitive and functional status (care recipients), and study endpoint variables. To collect follow-up data, the participants will be asked to complete the same survey again after 12 and 18 months.

Descriptive statistics will be used to explore sample characteristics, and between-group differences will be tested with χ² tests for categorical variables, and independent sample t-test for quantitative variables. Effects on primary and secondary endpoints will be tested using mixed models and potential confounders will be included as covariates.

U-Age TryBo

A prospective case-control design will be used to determine whether the new Swedish form for sheltered housing for older people has beneficial outcomes on older people’s quality of life (primary endpoint), thriving, and depression (secondary endpoints) as compared to ageing in place. A nationally representative sample of approximately 5000 older people (>70 years) living in sheltered housing (case) and ageing in place (age-matched controls) will be recruited through national registers. Cases consisting of older people living in sheltered housing (n ≈ 2500) will be recruited from the register held by the National Board of Housing, Building and Planning. This contains all newly built sheltered housing and refurbished houses now serving as sheltered housing. All older people living in these accommodations at the time of study will be invited to participate. Controls, consisting of older people who are ageing in place (n ≈ 2500) will be matched on age and gender on a 1:1 ratio.

Sample size calculations for the primary endpoint quality of life⁴⁰ indicate that a sample of n = 5000 will provide 95% power at the 0.05 significance level to detect significant case-control mean differences based on previously reported results in similar populations.^41,42 The study will run for three years and data will be collected by self-reported surveys on demographic characteristics, ability to perform activities of daily living, descriptive housing data, and characteristics of care and support, and study endpoints.

Participants will be invited to complete the study survey at baseline and after three years. In addition, data on consumption of health care, aged care, and pharmacology agents in the year of data collection will be extracted from national Swedish registries. The Swedish Patient Registry will be used to extract details of participants’ health care consumption in terms of number and place for health visits, and the diagnoses and length of stay associated with these visits. The Registry on Social Services for Older People and Persons with Disabilities will be used to obtain information about participants’ aged care consumption. The Swedish Prescribed drugs register will be used to extract participants’ pharmacology consumption such as number of prescriptions, Anatomical Therapeutic Chemical codes (ATC-codes), and total cost for pharmacy between cases and controls.

Descriptive statistics will be used to explore sample characteristics, and between-group differences will be tested with χ² tests for categorical variables, and independent sample t-test for continuous variables. Furthermore, regression analyses will be performed to analyse associations between background variables and the dependent variables health, thriving, and quality of life.

U-Age Nursing Home

A multi-centre, non-equivalent controlled group before-and-after design with participating sites in Melbourne (Australia), Oslo (Norway) and Västerbotten (Sweden) will be used to evaluate effects of a person-centred and thriving-promoting care model for nursing homes on: a) residents’ thriving (primary endpoint) and experience of the caring environment (secondary endpoint); b) relatives’ satisfaction with care (primary endpoint), experience of visiting the facility, and experience of the caring environment (secondary endpoints); and c) staff’s job satisfaction (primary endpoint), stress of conscience, experience of the caring environment, and perceived person-centredness (secondary endpoints).

A descriptive and interpretive design will be used to evaluate the meaning and significance of the care model as described by staff and relatives. This means that a subsample of staff and relatives will be invited to participate in focus group discussions and individual interviews on their experiences of the intervention when the intervention period is over. The study will be carried out in Australia, Norway and Sweden, with one intervention facility and one control facility in each country, in total three intervention facilities and three control facilities.

The intervention facilities will follow a structured 12-month protocol to implement the following three dimensions of the person-centred and thriving-promoting care model and integrate these into daily care practice:

Doing a little extra. With emphasis on the person-centred care philosophy of seeing, listening to, and acknowledging each person, this dimension involves activities that aim at doing something extra to facilitate thriving, wellbeing and a good life for residents, relatives and staff.

Developing a caring environment. This dimension focuses on facilitating a health-promoting and caring environment through an aesthetic physical environment that symbolises quality services, pride and respect for all people involved.

Assessing and meeting highly prioritised psychosocial needs. By implementing a structure for assessing highly prioritised psychosocial needs among residents, this dimension puts focus on the residents’ life stories and on devoting resources to meet such needs.

The control facilities will be invited to a two-hour lecture on person-centredness, person-centred care, thriving and caring environments, and then they will continue with their usual model of care and services. The control facilities will be invited to use the person-centred and thriving-promoting care model after the study has been completed.

Sample size calculations for the primary endpoint variable job satisfaction for care staff⁴³ indicate that a sample of n = 150 will provide 85% power at the 0.05 significance level to detect a significant pre–post intervention mean difference based on previously reported results in a similar context.³¹ For the primary endpoint variable thriving for residents,⁴⁴ sample size calculations indicate that a sample of n = 150 will provide 85% power at the 0.05 significance level to detect a significant pre–post intervention difference. For the primary endpoint variable satisfaction of care for relatives⁴⁵ sample size calculations indicate that a sample of n = 150 will be sufficient to detect a significant pre–post intervention mean difference based on overall satisfaction scores in similar contexts.⁴⁶ Data will be collected from all participants at both intervention and control facilities by self-ratings and/or proxy-ratings on demographic characteristics and study endpoints at baseline, post intervention, and at a six-month follow-up.

U-Age Svenis

A longitudinal design with a point prevalence initial measurement has been used to collect: a) demographic data and data on cognitive status, pain, depression, neuropsychiatric symptoms, functional status and ability, participation in activities, thriving and health-related quality of life among residents; and b) data on person-centredness of care, staff working situation and organisational aspects of nursing homes. The U-Age Svenis group has developed a valid, reliable and internationally comparable Swedish nursing home survey, and baseline data were collected in 2014 from a randomised Swedish nationally representative sample of nursing home residents (n = 4831) staff (n = 3661), and managers (n = 191) in 188 nursing homes from 38 municipalities.

The baseline data is analysed by descriptive and inferential analyses, and longitudinal repeated measures are planned to explore trends and predictors of resident health outcomes as well as care models and quality in nursing homes. The Svenis study also has a methods development focus which will contribute to addressing the fact that there is a shortage of internationally comparable tools and positive outcome measures used in aged care and care of people with dementia. Internationally available as well as newly constructed research tools to measure positive outcomes such as thriving and resident engagement will be used and tested within the study in self-report and proxy versions.

Ethics

The overall research programme conforms to the Declaration of Helsinki and the research protocols for the four subprojects have been submitted for ethics review (U-Age Home Care; U-Age TryBo) or received approval from appropriate ethical committees: U-Age Nursing Homes, 16-002 (Australia), 46548 (Norwegian Social Science Data Services, Norway), and 2015-407-31 (Sweden); U-Age Svenis, 2013-269-31.

Discussion and conclusion

The aim of this article was to describe the Umeä ageing and health research programme that explores person-centred care and health-promoting living conditions for an ageing population, and to place this research programme in a national and international context of available research evidence and trends in aged care policy and practice. The research programme responds to a shortage of research evidence on the content and outcomes of person-centred models of care as operationalised and implemented in home care and sheltered housing accommodations, as well as in nursing homes. It is expected that U-Age will contribute to generating valid, reliable and translational evidence in this space, through a complex intervention approach complemented by cross-sectional and longitudinal data. One key trend in national and international aged care policy and practice is to support ageing in place, and to provide care of older people and people with dementia in their own homes. However, evidence of how to provide person-centred care and support in people’s homes to cater for a range of needs across the physical, medical, social and existential domains are yet to accumulate. As is the evidence of successful models that delineate how to include the older person and family members as partners in analysing and prioritising needs for the old person.

Person-centred aged care has a growing evidence base, but the majority of current data is from hospitals and/or nursing homes.^{11–13,15,18} It is also difficult to interpret and synthesise the existing evidence on effects of providing person-centred care as the person-centred components are not always made clear in different intervention studies and as there is a shortage of empirical data to support that care practices actually became more person-centred post intervention. Thus a reasonable interpretation of the available literature is that further research is needed on models and effects of person-centred home care of older people, of sheltered housing models and on intervention models, implementation plans and outcomes of person-centred nursing home care.

Another contemporary challenge in aged care is to negotiate the allocation of resources in relation to multidimensional needs, and to decide which needs and responsibilities fall in the public versus the private domain as well as what is regarded as care and what is regarded as service. Activity participation in nursing home residents may be one example of such a blurred line between care and service. Previous studies have suggested that resident quality of life can improve by participating in familiar household activities,⁴⁹ in various hobbies and interests,⁵⁰ or in other personally meaningful activities^51,52 as well as these activities promoting a continuation of self and normality.⁵³ Recent findings also indicate that aged care staff attach great value to activities that can promote pleasurable living for residents.³ Unfortunately, pleasure and pleasurable experiences may not be among the first things connected to life in old age, even though pleasure can be interpreted as being central to life in society at large. Psychosocial support of older people living alone in their own homes is another example of the intersection between care and services. Previous research indicates that unmet social and psychological needs are a large and growing issue among older people who age in place,^23–26 which requires the allocation of care and resources if conceptualised as a psychosocial/existential health need. U-Age seeks to combine intervention designs and population-based studies to generate research evidence on the characteristics and factors of importance to develop aged care and housing models that can promote health and quality of life in an ageing population. New forms of aged care services and housing models for older people will be explored to detect health-promoting living arrangements, and strengthen the research evidence on aspects that can facilitate health, thriving, job satisfaction, quality of life, and satisfaction with care. The consisting intervention studies will be developed, tested and implemented in collaboration with key aged care stakeholders, to ensure relevance, trustworthiness and buy-in of the intervention in practice, in addition to employing well-established designs, as well as valid and reliable measures of primary, secondary and tertiary endpoints.

Footnotes

Funding

This research project received funding from the Swedish Research Council for Health, Working life and Welfare (2014–4016) and the Swedish Research Council (2014–2715).

Conflict of interest

The authors declare that there is no conflict of interest.

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