The researcher has carried out a literature-based study by analysing qualitative articles in order to critically analyse palliative patients’ experiences of being cared for in the home. The method is based on evidence-based nursing with basic qualitative research since the main focus of this systematic review is to understand the factors that influence the choice of home death specifically from a patient perspective. Qualitative research expands understanding of the chosen phenomenon on patients’ experiences, expectations and needs.
Literature searches were conducted in PubMed and Cinahl with nursing as a subject area. Keyword selection was based on the research purpose to identify factors influencing choice of home death in palliative care. The researcher also conducted a manual search based on references in other articles through snow balling different keywords. 11 of many such outcomes from database are summarised in Table 1. Before these 11 articles were isolated, many articles were selected for the relevance of their titles and authors and then read the articles abstract. In total, 51 audited abstracts were isolated and their full text was read for relevance and pertinence to the aforementioned research question.
Table 1: Selected Outcome of literature search
|Database||Keywords||Outcome||Audited abstract||Reviewed articles|
|PubMed||Palliative nursing care||238||7||3|
|PubMed||Palliative care at home AND experience||42||3||1|
|PubMed||Palliative care AND coping||41||8||2|
|PubMed||Palliative care AND quality of life AND cancer AND home care||63||11||2|
|Cinahl||Palliative care AND cancer||147||8||3|
|Cinahl||Palliative care AND outpatient AND patients experiences||157||8||2|
Criteria for Selected Sources
Peer-reviewed research papers were selected from all the full texts and formed the basis for this study. The researcher carried out the search of articles with the following inclusion criteria:
- Articles would answer the purpose of the study and the research question.
- Articles content would include quantitative or qualitative data but from a patient perspective
- Articles would be in English, and will be available in full text.
- Articles would be published from 2000 onwards and the content would be based on current research. The content would also be based on studies in adult patients with a diagnosis of advanced cancer.
Abstracts as for the purpose deemed interesting were scrutinized and then a selection of 51 full-text articles was read in full. The analysis of chosen 11 articles is based on Evans (2003) analysis, where the whole of the articles results were analysed and it exposes the parts that help synthesize new findings. The analysis is carried out by looking at studies several times and focusing on studies results. Evans identified key findings after synthesizing a compilation of key results of reviewed researches. Finally, the different studies results are related against each other and analysis is presented in new themes. This is the methodology used in the present study. Each of the articles was studied in detail to synthesize key results which were classified into three general themes and finally, different findings were related with one other to understand whether choice of home death is best for patients.
CHAPTER 3: RESULTS & FINDINGS
The results and findings presented in this chapter are based on palliative care patients’ experiences of being cared for in the home and are reported in three themes and further subthemes based on common and unique findings in the 11 articles. An overview of 11 researches selected for the study purpose is presented in appendix A. The first theme, it feels good to be home describes the patient’s experience of home life, the relationship with their relatives and carers. The second theme of life is limited – I’m trying to gain control describes the patient’s experience of daily life. The last theme of life with death proximity can be both safe and unsafe describes patients’ perceptions of security and hope, but also a sense of powerlessness while they prepare for death.
Table 2: Themes
|Theme 2||Theme 3|
It’s usually good to be home
Life is Limited – I am trying to gain control
To live in the proximity of death
It’s usually good to be home
The first main theme describes patients’ experience of being at home and what home means to them. Appelin & Berterö (2004) interviewed 6 palliative care patients and identified three themes. The first main theme describing patients’ experience of being at home and what home means to them. This was described as a feeling of safety and security. Patients felt at home in that environment with their personal belongings, memories and proximity to family. It made it possible for them to maintain their independence and maintain a sort of autonomy while also given the opportunity to live by normal routine and have a sense of “feel good”. These finding were endorsed by Melin-Johansson et al. who in their study of 2008 to determine the feasibility of research into palliative home care, found that being at home increased quality of life.
Patients suggested that it was wonderful to be cared for at home with the support of relatives, nursing and specialist staff that made it possible that suffering was alleviated and the quality of life and wellbeing increased (Melin-Johansson, et al., 2008). This finding was also endorsed by Ohman et al. (2003)’s doctoral thesis and Appelin & Berterö (2004)’s study, as at home, the patient could himself decide when and what they wanted to eat if they did not have an appetite, it was also easier to get peace and quiet of the example not slept so well.
“… It’s easier to be unwell if I can stay at home …” (Appelin & Berterö, 2004, p. 67)