Self-care and end of life care - patients' and carers' experience

a qualitative study utilising serial triangulated interviews

Bridget Margaret Johnston (Lead / Corresponding author), Stuart Milligan, Claire Foster, Nora Kearney

    Research output: Contribution to journalArticle

    25 Citations (Scopus)

    Abstract

    Purpose: This study aimed to understand patient and carer experiences of end of life care and to explore how patients care for themselves at the end of life in Scotland. Research questions: (1) From the perspectives of patients and carers, what are their experience of advanced cancer and end of life care? (2) What self-care strategies enable patient and carers to cope with their end of life care? Methods: This paper reports a qualitative study using in-depth, unstructured serial interviews involving collaboration with and participation of people affected by advanced cancer. The study was a 2-year, three-phase study with multiple methods of data collection. The study was conducted in the Highlands and West of Scotland including rural, remote and socially deprived areas. Patient experience data were collected from 20 patients as well as their main carer and the health professional who they perceived had given them the most support. Triangulating data in this way allowed the totality of the patient experience to be captured. A total of 71 interviews were conducted. Data were analysed both within and across cases using framework analysis with the aid of QSR NVIVO 7. Results: Maintaining normality and preparing for death were the two most important areas, for the patients in the study, as far as their self-care was concerned. Patients wished support that enabled them to maintain their independence and remain at home. People managed their illness both physically and emotionally; managing and adjusting to their lack of independence and keeping control were keys to most participants. Conclusions: Self-care is important to this group of people. People receiving end of life care want to and are able to engage in research. The findings are timely and relevant to current changes in palliative care policy and practice.
    Original languageEnglish
    Pages (from-to)1619-1627
    Number of pages9
    JournalSupportive Care in Cancer
    Volume20
    Issue number8
    Early online date11 Aug 2011
    DOIs
    Publication statusPublished - 2012

    Fingerprint

    Terminal Care
    Self Care
    Caregivers
    Interviews
    Scotland
    Palliative Care
    Research
    Neoplasms
    Patient Care
    Health

    Cite this

    Johnston, Bridget Margaret ; Milligan, Stuart ; Foster, Claire ; Kearney, Nora. / Self-care and end of life care - patients' and carers' experience : a qualitative study utilising serial triangulated interviews. In: Supportive Care in Cancer. 2012 ; Vol. 20, No. 8. pp. 1619-1627.
    @article{d562f61cbd864497bfc9effe74c2d351,
    title = "Self-care and end of life care - patients' and carers' experience: a qualitative study utilising serial triangulated interviews",
    abstract = "Purpose: This study aimed to understand patient and carer experiences of end of life care and to explore how patients care for themselves at the end of life in Scotland. Research questions: (1) From the perspectives of patients and carers, what are their experience of advanced cancer and end of life care? (2) What self-care strategies enable patient and carers to cope with their end of life care? Methods: This paper reports a qualitative study using in-depth, unstructured serial interviews involving collaboration with and participation of people affected by advanced cancer. The study was a 2-year, three-phase study with multiple methods of data collection. The study was conducted in the Highlands and West of Scotland including rural, remote and socially deprived areas. Patient experience data were collected from 20 patients as well as their main carer and the health professional who they perceived had given them the most support. Triangulating data in this way allowed the totality of the patient experience to be captured. A total of 71 interviews were conducted. Data were analysed both within and across cases using framework analysis with the aid of QSR NVIVO 7. Results: Maintaining normality and preparing for death were the two most important areas, for the patients in the study, as far as their self-care was concerned. Patients wished support that enabled them to maintain their independence and remain at home. People managed their illness both physically and emotionally; managing and adjusting to their lack of independence and keeping control were keys to most participants. Conclusions: Self-care is important to this group of people. People receiving end of life care want to and are able to engage in research. The findings are timely and relevant to current changes in palliative care policy and practice.",
    author = "Johnston, {Bridget Margaret} and Stuart Milligan and Claire Foster and Nora Kearney",
    note = "Online first",
    year = "2012",
    doi = "10.1007/s00520-011-1252-3",
    language = "English",
    volume = "20",
    pages = "1619--1627",
    journal = "Supportive Care in Cancer",
    issn = "0941-4355",
    publisher = "Springer Verlag",
    number = "8",

    }

    Self-care and end of life care - patients' and carers' experience : a qualitative study utilising serial triangulated interviews. / Johnston, Bridget Margaret (Lead / Corresponding author); Milligan, Stuart; Foster, Claire; Kearney, Nora.

    In: Supportive Care in Cancer, Vol. 20, No. 8, 2012, p. 1619-1627.

    Research output: Contribution to journalArticle

    TY - JOUR

    T1 - Self-care and end of life care - patients' and carers' experience

    T2 - a qualitative study utilising serial triangulated interviews

    AU - Johnston, Bridget Margaret

    AU - Milligan, Stuart

    AU - Foster, Claire

    AU - Kearney, Nora

    N1 - Online first

    PY - 2012

    Y1 - 2012

    N2 - Purpose: This study aimed to understand patient and carer experiences of end of life care and to explore how patients care for themselves at the end of life in Scotland. Research questions: (1) From the perspectives of patients and carers, what are their experience of advanced cancer and end of life care? (2) What self-care strategies enable patient and carers to cope with their end of life care? Methods: This paper reports a qualitative study using in-depth, unstructured serial interviews involving collaboration with and participation of people affected by advanced cancer. The study was a 2-year, three-phase study with multiple methods of data collection. The study was conducted in the Highlands and West of Scotland including rural, remote and socially deprived areas. Patient experience data were collected from 20 patients as well as their main carer and the health professional who they perceived had given them the most support. Triangulating data in this way allowed the totality of the patient experience to be captured. A total of 71 interviews were conducted. Data were analysed both within and across cases using framework analysis with the aid of QSR NVIVO 7. Results: Maintaining normality and preparing for death were the two most important areas, for the patients in the study, as far as their self-care was concerned. Patients wished support that enabled them to maintain their independence and remain at home. People managed their illness both physically and emotionally; managing and adjusting to their lack of independence and keeping control were keys to most participants. Conclusions: Self-care is important to this group of people. People receiving end of life care want to and are able to engage in research. The findings are timely and relevant to current changes in palliative care policy and practice.

    AB - Purpose: This study aimed to understand patient and carer experiences of end of life care and to explore how patients care for themselves at the end of life in Scotland. Research questions: (1) From the perspectives of patients and carers, what are their experience of advanced cancer and end of life care? (2) What self-care strategies enable patient and carers to cope with their end of life care? Methods: This paper reports a qualitative study using in-depth, unstructured serial interviews involving collaboration with and participation of people affected by advanced cancer. The study was a 2-year, three-phase study with multiple methods of data collection. The study was conducted in the Highlands and West of Scotland including rural, remote and socially deprived areas. Patient experience data were collected from 20 patients as well as their main carer and the health professional who they perceived had given them the most support. Triangulating data in this way allowed the totality of the patient experience to be captured. A total of 71 interviews were conducted. Data were analysed both within and across cases using framework analysis with the aid of QSR NVIVO 7. Results: Maintaining normality and preparing for death were the two most important areas, for the patients in the study, as far as their self-care was concerned. Patients wished support that enabled them to maintain their independence and remain at home. People managed their illness both physically and emotionally; managing and adjusting to their lack of independence and keeping control were keys to most participants. Conclusions: Self-care is important to this group of people. People receiving end of life care want to and are able to engage in research. The findings are timely and relevant to current changes in palliative care policy and practice.

    UR - http://www.scopus.com/inward/record.url?scp=80051895012&partnerID=8YFLogxK

    U2 - 10.1007/s00520-011-1252-3

    DO - 10.1007/s00520-011-1252-3

    M3 - Article

    VL - 20

    SP - 1619

    EP - 1627

    JO - Supportive Care in Cancer

    JF - Supportive Care in Cancer

    SN - 0941-4355

    IS - 8

    ER -