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

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 dementia ¹ 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.

Methods

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

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.