In-patient hospice: A qualitative study with Portuguese patients, family and staff

Hilário, Ana Patrícia

doi:10.1080/07481187.2015.1132283

Cited by 5 publications

(2 citation statements)

References 33 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…In-patient hospice care during the last 6-months of life is associated with improved patient care experience, including satisfaction and pain control, and decreased mortality [13]. Patients value receiving suitable care whilst still enjoying the company of loved ones, but without placing a burden on them relating to their dying process [14]. They further appreciate the psychosocial climate and high-quality communication [15] whilst in-patient hospice care has been assessed more favourably by bereaved relatives compared to in-patient hospital care [16].…”

Section: Patient Experience Of Receiving Hospice Carementioning

confidence: 99%

“The way I am treated is as if I am under my mother’s care”: qualitative study of patients’ experiences of receiving hospice care services in South Africa

2020

View full text Add to dashboard Cite

Background: Research on the patient experience of receiving palliative care across a number of settings is increasing, but the majority of these investigations are situated within the context of developed countries. There is limited research from resource-limited countries, especially with regard to patients with cancer who receive hospice care. The present study explored the lived experience of attending hospice care facilities in South Africa to develop a bottom-up understanding from the perspectives of patients themselves. Methods: A qualitative cross-sectional study was designed to examine how patients experienced receiving hospice care We conducted in-depth, semi-structured interviews with thirteen, purposively selected patients living with terminal cancer and receiving in-patient or day care palliative services from a hospice organisation in South Africa. We used inductive thematic analysis to analyse the data. Results: We identified three themes that reflected a process of transformation that was experienced by participants during their engagement with the hospice services. The first theme describes participants' initial reluctance to be linked to the hospice as a result of the stereotypic perceptions of hospice as being associated with death and dying. The second theme presents the perceived positive impact on patients' physical and psychosocial wellbeing which resulted from the highly valued interactions with staff and other patients as well as patients' engagement with creative activities. The final theme delineates the transformation of hospice into a second 'family' and 'home' and the restoration of an identity that expands beyond the 'sick' role. Conclusions: Receiving hospice care that sensitively attends to patients' psychosocial and physical needs helps people to recreate a sense of homeliness within the world, reorient themselves toward a meaningful life and reconfigure their relationship with self. Patient experience of receiving hospice care in South Africa does not appear dissimilar to that reported by patients in resource-rich countries, suggesting underlying commonalities. There is a need for raising awareness and educating the public about what palliative care can offer to those in need. Public health campaigns could help reduce the stigma attached to palliative care, deflect negative perceptions, and communicate the benefits for patients, families and communities in culturally sensitive ways.

show abstract

Section: Patient Experience Of Receiving Hospice Carementioning

confidence: 99%

“The way I am treated is as if I am under my mother’s care”: qualitative study of patients’ experiences of receiving hospice care services in South Africa

2020

View full text Add to dashboard Cite

show abstract

“…Also, by avoiding discussing their prognosis, patients were able to “maintain a normal life” (MacArtney et al, 2017). The refusal to discuss the prognosis could also be because of the perception of the consequences that this might have on their family members (Hilário, 2016) and their desire to protect them (MacArtney et al, 2016). End-of-life communication is shaped by individual preferences (Broom et al, 2014) and relational dynamics (MacArtney et al, 2015).…”

Section: Discussionmentioning

confidence: 99%

Preferences around the disclosure of dying: A vision from Portuguese society

Hilário

2019

Pall Supp Care

Self Cite

View full text Add to dashboard Cite

ObjectiveThis paper aims to explore the extent to which the “revivalist” discourse of a good death, which promotes an awareness of dying shapes the lived realities of palliative care patients and their families in Portugal.MethodAn ethnographic approach was developed. Participant observation was carried out in 2 palliative care units, and this was complemented by in-depth interviews. Ten terminally ill patients, 20 family members, and 20 palliative care professionals were interviewed.ResultsThe “revivalist” good death script might not be suitable for all dying people, as they might not want an open awareness of dying and, thereby, the acknowledgment of imminent potential death. This might be related to cultural factors and personal circumstances. The “social embeddedness narrative” offers an alternative to the “revivalist” good death script.Significance of resultsThe “revivalist” discourse, which calls for an open awareness of dying, is not a cultural preference in a palliative care context in Portugal, as it is not in accord with its familial nature.

show abstract

Quality of Life in the Process of Dying

Boggatz

2019

Quality of Life and Person-Centered Care for Older People

View full text Add to dashboard Cite

In-patient hospice: A qualitative study with Portuguese patients, family and staff

Cited by 5 publications

References 33 publications

“The way I am treated is as if I am under my mother’s care”: qualitative study of patients’ experiences of receiving hospice care services in South Africa

“The way I am treated is as if I am under my mother’s care”: qualitative study of patients’ experiences of receiving hospice care services in South Africa

Preferences around the disclosure of dying: A vision from Portuguese society

Quality of Life in the Process of Dying

Contact Info

Product

Resources

About