Abstract Background: In line with changing demographics, conditions for older people have also changed. Older people are expected to live and be cared for in their own home for as long as possible. Increasing age also increases the risk of multimorbidity and the need for social services and health care services. Home care, instituted by different laws, is complex and requires cooperation from an older person when his/her home becomes a workplace for service providers.

Aim: This study aims to illuminate the meaning of being an older person with multimorbidity who lives alone and who is cared for in his/her own home.

Design: This study uses a qualitative design with a lifeworld approach.

Methods: Conducted in Sweden in 2016, the researchers interviewed 12 older persons that live alone and receive home care. Data was analysed using qualitative content analysis.

Results: The findings illustrate four sub-themes: adapting to a caring culture, being exposed, participation with limitations and being dependent on forced relationships. The overall theme reveals that older people experience a life-changing situation when receiving home care and they become a guest in their own home.

Conclusions: Becoming older with increased needs means to disrupt one’s life when one’s private home becomes a public arena. Caregivers need to be aware of the gap between their rights by law and an older person’s experiences of receiving home care. Only then can care be offered that enables older people to have a sense of control and experience their home as their own.

Implications for Practice: The findings emphasise the need to view older people as being self-determinant and independent. Older people receiving home care need to be seen as individuals, and their entire life situation should be considered by also acknowledging the important role played by relatives and caregivers.

Background

When the ageing population increases, the burden and responsibility of close family members will likely increase. Those closely related who assume a great responsibility can be significantly affected in health, well‐being and daily life.

Aim

This study aims to describe the life situation when family caregivers are imposed responsibility for an older person with complex care needs in their own home.

Methods

In this Swedish qualitative study, ten family caregivers were strategically selected in order to achieve variations in the life situation. A reflective lifeworld research design based on phenomenological philosophy was used throughout the data collection with the lifeworld interviews and the analytic process.

Findings

In terms of extensive responsibility, the life situation is complex and involves emotions that are difficult to manage. In essence, a paradoxical life situation is described which is experienced as both voluntarily and nonchosen at the same time. The responsibility never rests. The essential meaning is further illustrated with three constituents: loss of freedom, contradictory feelings and affected relationships.

Conclusion

A life situation with extensive responsibility for an older family member interferes with the whole life situation with an impact on health and relationships with other people. The findings are crucial for professional caregivers in order to capture the nature of family support in a way that enables a meaningful life for both the family caregiver and the older person being cared for. Knowledge of this will give professional caregivers an increased awareness of the life situation of family caregivers and provide a better understanding of the support they are longing for, and, in some countries, such as Sweden, also are entitled to by law.

Older people in Sweden are increasingly being cared for in the own home, where professional caregivers play an important role. This study aimed to describe perceptions of caring responsibility in the context of older people’s homes from the perspective of professional caregivers from caring professions. Fourteen interviews were conducted with professional caregivers from different professions. The result show how professional caregivers perceive responsibility as limitless, constrained by time, moral, overseeing, meaningful and lonesome. Responsibility seems to affect caregivers to a large extent when the burden is high. Professional caregivers’ perceptions of responsibility, and the potential consequences of a perceived strained work situation therefore need to be addressed. The findings also indicate a need for professional support and guidance when it is difficult to distinguish between professional and personal responsibility.

To a great extent, older people in Sweden, often with extensive care needs, are cared for in their own home. Support is often needed from both family and professional caregivers. This study aimed to describe and analyse different aspects of health, functioning and social networks, and how they relate to formal and informal care in the home among older adults. Analyses were performed utilising data from the OCTO-2 study, with a sample of 317 people living in Jonkoping County, aged 75, 80, 85 or 90 years, living in their own homes. Data were collected with in-person-testing. Based on receipt of care, the participants were divided into three groups: no care, informal care only, and formal care with or without informal care. Descriptive statistics and multinomial regression analysis were performed to explore the associations between received care and different aspects of health (such as multimorbidity, polypharmacy), social networks (such as loneliness, number of confidants) and functioning (such as managing daily life). The findings demonstrate that the majority of the participants received no care at home (61%). Multimorbidity and polypharmacy were more common among those receiving some kind of care in comparison to those who received no care; moreover, those receiving some kind of care also had difficulties managing daily life and less satisfaction with their social networks. The multinomial logistic regression analyses demonstrated that age, functioning in daily life, perceived general health and satisfaction with the number of confidants were related to receipt of care, but the associations among these factors differed depending on the type of care that was received. The results show the importance of a holistic perspective that includes the older person's experiences when planning home care. The results also highlight the importance of considering social perspectives and relationships in home care rather than focusing only on health factors.