Developing a model of short-term integrated palliative and supportive care for frail older people in community settings: Perspectives of older people, carers and other key stakeholders

Age and Ageing

Volumn 45, Issue 6, 2016, Pages 863-873

  Bone, Anna E ^a   Morgan, Myfanwy ^a   Maddocks, Matthew ^a   Sleeman, Katherine E ^a   Wright, Juliet ^b   Taherzadeh, Shamim ^c   Ellis Smith, Clare ^a   Higginson, Irene J ^a   Evans, Catherine J ^a,d  

^a KING'S COLLEGE LONDON   (United Kingdom)

^b BRIGHTON AND SUSSEX MEDICAL SCHOOL   (United Kingdom)

^c Northbourne Medical Centre   (United Kingdom)

^d SUSSEX COMMUNITY NHS FOUNDATION TRUST   (United Kingdom)

Author keywords

Consensus; Frail older people; Palliative care; Primary health care; Qualitative research

Indexed keywords

AGE; AGED; AGING; ATTITUDE TO HEALTH; CAREGIVER; CLINICAL TRIAL; COMMUNITY CARE; CONSENSUS; ELDERLY CARE; ENGLAND; FRAIL ELDERLY; FRAILTY; HEALTH CARE QUALITY; HEALTH PERSONNEL ATTITUDE; HUMAN; INFORMATION PROCESSING; INTEGRATED HEALTH CARE SYSTEM; MULTICENTER STUDY; NONBIOLOGICAL MODEL; ORGANIZATION AND MANAGEMENT; PALLIATIVE THERAPY; PATIENT CARE; PRIMARY HEALTH CARE; PSYCHOLOGY; QUALITATIVE RESEARCH; QUESTIONNAIRE; STAKEHOLDER ENGAGEMENT; TREATMENT OUTCOME;

AGE FACTORS; AGED; AGING; ATTITUDE OF HEALTH PERSONNEL; CAREGIVERS; COMMUNITY HEALTH SERVICES; CONSENSUS; DELIVERY OF HEALTH CARE, INTEGRATED; ENGLAND; FOCUS GROUPS; FRAIL ELDERLY; FRAILTY; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEALTH SERVICES FOR THE AGED; HUMANS; MODELS, ORGANIZATIONAL; PALLIATIVE CARE; PATIENT CARE TEAM; PRIMARY HEALTH CARE; PROCESS ASSESSMENT (HEALTH CARE); QUALITATIVE RESEARCH; STAKEHOLDER PARTICIPATION; SURVEYS AND QUESTIONNAIRES; TREATMENT OUTCOME;

EID: 85019559450     PISSN: 00020729     EISSN: 14682834     Source Type: Journal    
DOI: 10.1093/ageing/afw124     Document Type: Article

References (30)

1. Davis RM, Wagner EH, Groves T. Managing chronic disease. BMJ 1999; 318: 1090-1.
2. Murray CJ, Vos T, Lozano R et al. Disability-adjusted life years (DALYs) for 291 diseases and injuries in 21 regions, 1990-2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet 2012; 380: 2197-223.
3. Clegg A, Young J, Iliffe S, Rikkert MO, Rockwood K. Frailty in elderly people. Lancet 2013; 381: 752-62.
4. Rockwood K, Mitnitski A. Frailty defined by deficit accumulation and geriatric medicine defined by frailty. Clin Geriatr Med 2011; 27: 17-26.
5. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ 2005; 330: 1007-11.
6. Hall S, Petkova H, Tsouros A, Costantini M, Higginson IJ. Palliative Care for Older People: Better Practices. Copenhagan: World Health Organisation Regional Office for Europe, 2011.
7. Radbruch LPS. White Paper on standards and norms for hospice and palliative care in Europe: part 1. Eur J Palliative Care 2009; 16: 278-89.
8. Bausewein C, Booth S, Gysels M, Kuhnbach R, Haberland B, Higginson IJ. Understanding breathlessness: cross-sectional comparison of symptom burden and palliative care needs in chronic obstructive pulmonary disease and cancer. J Palliat Med 2010; 13: 1109-18.
9. Palliative and End of Life Care Priority Setting Partnership. Putting Patients, Carers and Clinicians at the Heart of Palliative and End of Life Care Research. 2015.
10. Higginson IJ, Evans CJ. What is the evidence that palliative care teams improve outcomes for cancer patients and their families? Cancer J 2010; 16: 423-35.
11. Murtagh FEM, Bausewein C, Petkova H et al. Understanding Place of Death for Patients with Non-malignant Conditions: A Systematic Literature Review. Final Report Southampton: 2012.
12. Pinnock H, Kendall M, Murray SA et al. Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. BMJ 2011; 342: d142.
13. Higginson IJ, McCrone P, Hart SR, Burman R, Silber E, Edmonds PM. Is short-term palliative care cost-effective in multiple sclerosis? A randomized phase II trial. J Pain Symptom Manage 2009; 38: 816-26. doi:S0885-3924(09) 00741-6 pii;10.1016/j.jpainsymman.2009.07.002.
14. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ 2008; 337: a1655.
15. Higginson IJ, Evans CJ, Grande G et al. Evaluating complex interventions in End of Life Care: the MORECare Statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews. BMC Med 2013; 11. doi:10.1186/1741-7015-11-111(111).
16. Potter M, Gordon S, Hamer P. The nominal group technique: a useful consensus methodology in physiotherapy research. N Z J Physiother 2004; 32: 126-30.
17. Morgan DL. Focus Groups as Qualitative Research, 2nd ed. London: Sage, 1997.
18. Office for National Statistics. Neighbourhood Statistics. 2011. [cited 2015 2nd February]. http://www.neighbourhood.statistics.gov.uk/ (3 August 2016, date last accessed).
19. Office for National Statistics. Deaths Registered by Area of Usual Residence, UK. 2016. https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/ datasets/deathsregisteredbyareaofusualresidenceenglandand wales (3 August 2016, date last accessed).
20. Bone AE, Wei G, Gomes B et al. Factors associated with transition to hospital from community settings at the end of life for adults aged 75 years or older: a population-based mortality follow-back survey. J Am Geriatr Soc 2016 (in press).
21. Manthorpe J, Iliffe S, Samsi K et al. Dementia, dignity and quality of life: nursing practice and its dilemmas. Int J Older People Nurs 2010; 5: 235-44.
22. Jones J, Hunter D. Consensus methods for medical and health services research. In: Mays N, Pope C, eds. Qualitative Research in Health Care, 2nd edition London: British Medical Journal Publishing Group, 1999.
23. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005; 15: 1277-88.
24. O'Cathain A, Murphy E, Nicholl J. Three techniques for integrating data in mixed methods studies. BMJ 2010; 341: c4587.
25. Kendall M, Carduff E, Lloyd A et al. Different experiences and goals in different advanced diseases: comparing serial interviews with patients with cancer, organ failure, or frailty and their family and professional carers. J Pain Symptom Manage 2015; 50: 216-24.
26. Coventry PA, Grande GE, Richards DA, Todd CJ. Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: a systematic review. Age Ageing 2005; 34: 218-27.
27. Zimmermann C, Swami N, Krzyzanowska M et al. Early palliative care for patients with advanced cancer: a clusterrandomised controlled trial. The Lancet 2014; 383: 1721-30.
28. Dzingina MD, Higginson IJ. Public health and palliative care in 2015. Clin Geriatr Med 2015; 31: 253-63.
29. Daveson BA, Harding R, Shipman C et al. The real-world problem of care coordination: a longitudinal qualitative study with patients living with advanced progressive illness and their unpaid caregivers. PLoS One 2014; 9: e95523.
30. Commissioning Guidance for Specialist Palliative Care: Helping to Deliver Commissioning Objectives. London, UK: Guidance Document Published Collaboratively with the Association for Palliative Medicine of Great Britain and Ireland, Consultant Nurse in Palliative Care Reference Group, Marie Curie Cancer Care, National Council for Palliative Care, and Palliative Care Section of the Royal Society of Medicine, 2012.