Life situation and participation as experienced by adult patients in palliative home care

Abstract

Background: Many patients are currently cared for at the end-of-life stage at home, and the number is expected to increase. The patient's participation is a prerequisite for good care, which also relates to ethical principles and evidence-based action.Aim: To describe adult patients' experiences of their life situation and their participation in palliative home care.Method: A reflective lifeworld approach and a phenomenological meaning analysis were conducted. Six adult patients in palliative home care were interviewed in Sweden during 2018.Results: One essential meaning and five elements of that meaning describe adult patients' life situations and participation in their palliative home care. The essential meaning referred to needing and endeavouring to live as usual and taking responsibility for life. The five essential elements were: The home should be my home, where I know who is coming through the door; I should know when help is coming and be included when decisions are made; routines should be maintained, but without booking up tomorrow; accept death, feel hope, and plan for relatives after my death; and be aware that death is imminent, but not know when it will come. Conclusions:Participation in palliative home care can be maintained and improved by caregivers behaving as guests in the patient's home, building up the patient's trust, showing consideration for patients and their relatives, promoting patients living everyday life as they previously had, asking about the patient's habits, and giving patients time and continuity in the caregiving relationship. Education should focus on how to have supportive conversations with a patient who is dying and preparing for death.

Pasienters opplevelse av trygghet med palliativ omsorg i hjemmet

“…Pasienter i sen palliativ fase ønsker ofte å vaere hjemme så lenge det lar seg gjøre og leve et liv så naert opp til det vante som mulig (Bannon et al, 2018;Fringer et al, 2018;Higginson et al, 2014;Jonasson et al, 2019;Sandsdalen et al, 2015a). Mange pasienter ønsker også å få dø hjemme (Gomes et al, 2013;Vidal et al, 2020).…”

‘My registered nurse’: Older people’s experiences of registered nurses’ leadership close to them in community home care in Sweden

“…Being dependent on help could be problematic for older people because they leave both themselves and their homes in the hands of others. In such cases, they must let unknown people into their homes, including those that they did not choose themselves (Jonasson et al, 2019). Older people are often seen as a recipient and not as a partner in care (Gregory et al, 2018), although they do want to be involved in decisions about their own care at home (Gregory et al, 2017).…”

“…Leadership, on the other hand, strives to construct changes by promoting both a view of the future and strategies to reach that view (Josefsson & Hansson, 2011). Clinical leadership and nursing leadership are evident in nursing (Stanley & Stanley, 2018), and an RN has a personal responsibility to display leadership close to older people (Jonasson et al, 2019; Josefsson & Hansson, 2011). While there are different leadership approaches (Avolio et al, 2009), there is no specific approach for nursing leadership.…”

Next of kin’s experiences of registered nurses’ leadership close to older adults in municipal home care in Sweden: an interview study

“…Further, RNs have to be able to engage in and be sensitive to older adults' individual needs and their whole beings [11], as well as to provide support to both the older adult and their next of kin [3,15]. RNs have an ethical responsibility for this leadership [12,19], which involves interacting with older adults and their next of kin as partners in their care.…”