期刊论文详细信息
BMC Research Notes
PalliPA: How can general practices support caregivers of patients at their end of life in a home-care setting? A study protocol
Frank Peters-Klimm2  Stephen M Campbell1  Joachim Szecsenyi2  Peter Engeser2  Regine Boelter2  Katja Hermann2 
[1] Health Sciences Research Group-Primary Care, University of Manchester, 7th Floor: Williamson Building, Manchester, M13 9PL, UK;Department of General Practice and Health Services Research, University Hospital Heidelberg, Vossstr. 2, 69115, Heidelberg, Germany
关键词: Participatory action research;    General practice;    Family caregivers;    End-of-life care;   
Others  :  1166429
DOI  :  10.1186/1756-0500-5-233
 received in 2012-03-29, accepted in 2012-05-14,  发布年份 2012
PDF
【 摘 要 】

Background

The care of patients with a life-threatening, progressive and far advanced illness in a home-care setting requires appropriate individual care and requires the active support of family caregivers. General practice teams are usually the primary care givers and first contact and are best placed to offer support to family caregivers and to recognise and respond to the burden of care giving on family members. The aim of this project is to develop a best practice model for engaging with and supporting family caregivers.

Findings

The project is framed as an exploratory trial for a subsequent implementation study, covering phases 0, I and II of the MRC (Medical Research Council) framework for development, design and evaluation of complex interventions. The project is a multi-method procedure and has two phases. In the first phase, which has already been completed, we used a reflective practice procedure where general practice teams were asked about how they currently deal with family caregivers. In the second phase, a participatory action research approach aims to improve identification and response to when support is necessary for family caregivers. Ten participating general practice teams each enrol 40 eligible patients and their family caregiver, to identify structures and tools feasible for use in their practice. Standardised self-reported questionnaires (Burden Scale for Family Caregivers and Quality of Life Questionnaire Core 15 Palliative) are being applied at study inclusion (prior to or during the implementation period) and after 6 and 12 months to explore implementation effects. Qualitative assessment of general practice teams’ experiences will be triangulated with the quantitative evaluation of the implementation.

Discussion

This two-step approach, which is appropriate to primary palliative care in the German health care context, will enable general practice teams to develop feasible, acceptable and successful strategies for the implementation of best practice to successfully support family caregivers of patients at the end of life.

【 授权许可】

   
2012 Hermann et al.; licensee BioMed Central Ltd.

【 预 览 】
附件列表
Files Size Format View
20150416044346561.pdf 231KB PDF download
Figure 1. 37KB Image download
【 图 表 】

Figure 1.

【 参考文献 】
  • [1]Ramirez A, Addington-Hall J, Richards M: ABC of palliative care: The carers. BMJ 1998, 316:208-211.
  • [2]World Health Organization: Palliative Care: the Solid Facts. , Copenhagen; 2004.
  • [3]Higginson IJ, Sen-Gupta GJ: Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med 2000, 3:287-300.
  • [4]Townsend J, Frank AO, Fermont D, Dyer S, Karran O, Walgrove A, Piper M: Terminal cancer care and patients’ preference for place of death: a prospective study. BMJ 1990, 301:415-417.
  • [5]Karlsen S, Addington-Hall J: How do cancer patients who die at home differ from those who die elsewhere? Palliat Med 1998, 12:279-286.
  • [6]Higginson IJ, Astin P, Dolan S: Where do cancer patients die? Ten-year trends in the place of death of cancer patients in England. Palliat Med 1998, 12:353-363.
  • [7]Jordhoy MS, Saltvedt I, Fayers P, Loge JH, Ahlner-Elmqvist M, Kaasa S: Which cancer patients die in nursing homes? Quality of life, medical and sociodemographic characteristics. Palliat Med 2003, 17:433-444.
  • [8]Howat A, Veitch C, Cairns W: A retrospective review of place of death of palliative care patients in regional north Queensland. Palliat Med 2007, 21:41-47.
  • [9]Jordhoy MS, Fayers P, Saltnes T, Ahlner-Elmqvist M, Jannert M, Kaasa S: A palliative-care intervention and death at home: a cluster randomised trial. Lancet 2000, 356:888-893.
  • [10]Tiernan E, O’Connor M, O’Siorain L, Kearney M: A prospective study of preferred versus actual place of death among patients referred to a palliative care home-care service. Ir Med J 2002, 95:232-235.
  • [11]Docherty A, Owens A, Asadi-Lari M, Petchey R, Williams J, Carter YH: Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review. Palliat Med 2008, 22:153-171.
  • [12]Gomes B, Higginson IJ: Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ 2006, 332:515-521.
  • [13]Murray MA, Fiset V, Young S, Kryworuchko J: Where the dying live: a systematic review of determinants of place of end-of-life cancer care. Oncol Nurs Forum 2009, 36:69-77.
  • [14]Lorenz KA, Lynn J, Dy SM, Shugarman LR, Wilkinson A, Mularski RA, Morton SC, Hughes RG, Hilton LK, Maglione M, Rhodes SL, Rolon C, Sun VC, Shekelle PG: Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med 2008, 148:147-159.
  • [15]Zank S, Schacke C: Projekt Längsschnittstudie zur Belastung pflegender Angehöriger von dementiell Erkrankten (LEANDER). Kurzfassung Abschlussbericht Phase 2: Längsschnittergebnisse der LEANDER Studie, Universität Siegen; 2007.
  • [16]Donath C, Grassel E, Grossfeld-Schmitz M, Menn P, Lauterberg J, Wunder S, Marx P, Ruckdaschel S, Mehlig H, Holle R: Effects of general practitioner training and family support services on the care of home-dwelling dementia patients-results of a controlled cluster-randomized study. BMC Health Serv Res 2010, 10:314.
  • [17]Sörensen S, Pinquart M, Duberstein P: How effective are interventions with caregivers? An updated meta-analysis. Gerontologist 2002, 42:7.
  • [18]Murray SA, Kendall M, Boyd K, Sheikh A: Illness trajectories and palliative care. BMJ 2005, 330:1007-1011.
  • [19]Williams AL, McCorkle R: Cancer family caregivers during the palliative, hospice, and bereavement phases: a review of the descriptive psychosocial literature. Palliat Support Care 2011, 9:315-325.
  • [20]Meyer M, Mischke C, Niesen A, Schneider F: Beratung pflegender Angehöriger-Pflegeberatungsbedarfe im Verlauf von ‘Pflegendenkarrieren’ aus der Perspektive Pflegender Angehöriger. Projektabschlussbericht. HTW des Saarlandes, Saarbrücken; 2008.
  • [21]Brogaard T, Jensen AB, Sokolowski I, Olesen F, Neergaard MA: Who is the key worker in palliative home care? Scand J Prim Health Care 2011, 29:150-156.
  • [22]Dahlberg L, Demack S, Bambra C: Age and gender of informal carers: a population-based study in the UK. Health Soc Care Community 2007, 15:439-445.
  • [23]Dörpinghaus S: Evaluation von Pflegekursen: Stärken und Herausforderungen. Pflege & Gesellschaft 2006, 11:8.
  • [24]: Pflegende Angehörige. Leitlinie. omikron publishing, Düsseldorf; 2005.
  • [25]Grande G, Stajduhar K, Aoun S, Toye C, Funk L, Addington-Hall J, Payne S, Todd C: Supporting lay carers in end of life care: current gaps and future priorities. Palliat Med 2009, 23:339-344.
  • [26]Jack B, O’Brien M: Dying at home: community nurses’ views on the impact of informal carers on cancer patients’ place of death. Eur J Cancer Care (Engl) 2010, 19:636-642.
  • [27]Shaw KL, Clifford C, Thomas K, Meehan H: Review: improving end-of-life care: a critical review of the gold standards framework in primary care. Palliat Med 2010, 24:317-329.
  • [28]Schneider N, Mitchell GK, Murray SA: Palliative care in urgent need of recognition and development in general practice: the example of Germany. BMC Fam Pract 2010, 11:66.
  • [29]Voltz R: Palliativmedizin: eine Disziplin für den ganzen Menschen. Dtsch Arztebl 2008, 105:3.
  • [30]Campbell NC, Murray E, Darbyshire J, Emery J, Farmer A, Griffiths F, Guthrie B, Lester H, Wilson P, Kinmonth AL: Designing and evaluating complex interventions to improve health care. BMJ 2007, 334:455-459.
  • [31]Campbell M, Fitzpatrick R, Haines A, Kinmonth AL, Sandercock P, Spiegelhalter D, Tyrer P: Framework for design and evaluation of complex interventions to improve health. BMJ 2000, 321:694-696.
  • [32]Murray SA, Boyd K, Campbell C, Cormie P, Thomas K, Weller D, Kendall M: Implementing a service users’ framework for cancer care in primary care: an action research study. Fam Pract 2008, 25:78-85.
  • [33]Mayring P: Qualitative Inhaltsanalyse. Grundlagen und Techniken. Beltz, Weinheim; 2008.
  • [34]Prenzler A, Mittendorf T, von der Schulenburg J-M, Theidel U, Montag T, Müller-Busch HC: Aspects of outpatient palliative care in Germany-a survey among office-based physicians. J Public Health 2011, 19:155-160.
  • [35]Northfield S, Nebauer M: The Caregiving Journey for Family Members of Relatives With Cancer: How Do They Cope? Clin J Oncol Nurs 2010, 14:567-577.
  • [36]Meyer M, Kofahl C, Kubesch N: Literature-State of the art. In EUROFAMCARE. Services for Supporting Family Carers of Older Dependent People in Europe: Characteristics, Coverage and Usage. Edited by Döhner H, Kofahl C, Lüdecke D, Mnich E. The National Survey Report for Germany, ; 2007:16-44.
  • [37]Carlfjord S, Lindberg M, Bendtsen P, Nilsen P, Andersson A: Key factors influencing adoption of an innovation in primary health care: a qualitative study based on implementation theory. BMC Family Practice 2010, 11:60.
  • [38]Wadsworth Y: What is participatory action research? Volume Paper 2. Action Research International, ; 1998.
  • [39]Grässel E, Chiu T, Oliver R: Development and validation of the Burden Scale for Family Caregivers (BSFC). COTA Comprehensive Rehabilitation and Mental Health Services, Toronto; 2003.
  • [40]Groenvold M, Petersen MA, on behalf of the European Quality of Life Group: Addendum to the EORTC QLQ-C30 Scoring Manual: Scoring of the EORTC QLQ-C15-PAL. , ; 2006.
  • [41]Rosemann T, Hermann K, Miksch A, Engeser P, Szecsenyi J: The PAMINO-project: evaluating a primary care-based educational program to improve the quality of life of palliative patients. BMC Palliat Care 2007, 6:5.
  • [42]Brown RH: On the use of a pilot sample for sample size determination. Statistics in Medicine 1995, 14:1933-1940.
  • [43]Bleeker F, Kruschinski C, Breull A, Berndt M, Hummers-Pradier E: Characteristics of palliative care patients in general practice. Z Allg Med 2007, 83:477-482.
  • [44]Schneider N, Buser K, Amelung VE: Attitudes of family doctors on health care for incurable patients at the end of life-results from a survey in Lower Saxony. Z Allg Med 2006, 82:298-304.
  • [45]Campbell SM, Roland MO, Buetow SA: Defining quality of care. Soc Sci Med 2000, 51:1611-1625.
  文献评价指标  
  下载次数:31次 浏览次数:11次