Recruitment and Reasons for Non-Participation in a Family-Coping-Orientated Palliative Home Care Trial (FamCope)

REFERENCES

• Aaronson, A.N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N.J., & Takeda, F. (1993). The European Organization for Research and Treatment of Cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute, 85, 365–376.
   PubMed Web of Science ®Google Scholar
• Ahlner-Elmqvist, M., Jordhøy, M.S., Bjordal, K., Jannert, M., & Kaasa, S. (2008). Characteristics and quality of life of patients who choose home care at the end of life. Journal of Pain and Symptom Management, 36(3), 217–227.
   PubMed Web of Science ®Google Scholar
• Altman, D.G. (1991). Practical statistics for medical research (1st ed.). London: Chapman & Hall.
   Google Scholar
• Badr, H., & Krebs, P. (2013). A systematic review and meta-analysis of psychosocial interventions for couples coping with cancer †. Psycho-Oncology, 22, 1688–1704.
   PubMed Web of Science ®Google Scholar
• Bee, P.E., Barnes, P., & Luker, K.a. (2009). A systematic review of informal caregivers’ needs in providing home-based end-of-life care to people with cancer. Journal of Clinical Nursing, 18(10), 1379–1393.
   PubMed Web of Science ®Google Scholar
• Boonzaier, A., Pollard, A., Ftanou, M., Couper, J.W., Schofield, P., Mileshkin, L., & Henderson, M. (2010). The practical challenges of recruitment and retention when providing psychotherapy to advanced breast cancer patients. Supportive Care in Cancer, 18(12), 1605–1613.
   PubMed Web of Science ®Google Scholar
• Buss, M.K., Dubenske, L.L., Dinauer, S., Gustafson, D.H., Mctavish, F., & Cleary, J.F. (2008). Patient / caregiver influences for declining participation in supportive oncology trials. Journal of Supportive Oncology, 6, 168–174.
   PubMedGoogle Scholar
• Carlson, L.E., Bultz, B.D., Speca, M., & Pierre, M.S. (2000). Partners of cancer patients: Part I. Impact, adjustment, and coping across the illness trajectory. Journal of Psychosocial Oncology, 18(2), 39–63.
   Web of Science ®Google Scholar
• Cella, D.F., Mahon, S.M., & Donovan, M.I. (1990, January). Cancer recurrence as a traumatic event. Behavioral Medicine (Washington, D.C.), 16(1), 15–22.
   PubMed Web of Science ®Google Scholar
• Danish Health and Medicines Authority. (2010). Styrket indsats på kræftområdet - et sundhedsfagligt oplæg. Copenhagen.
   Google Scholar
• Ellis, P.M. (2000). Attitudes towards and participation in randomised clinical trials in oncology: a review of the literature. Annals of Oncology: Official Journal of the European Society for Medical Oncology / ESMO, 11(8), 939–945.
   PubMed Web of Science ®Google Scholar
• Ferrario, S.R., Cardillo, V., Vicario, F., Balzarini, E., & Zotti, A.M. (2004). Advanced cancer at home: caregiving and bereavement. Palliative Medicine, 18(2), 129–136.
   PubMed Web of Science ®Google Scholar
• Ferris, F.D., Bruera, E., Cherny, N., Cummings, C., Currow, D., Dudgeon, D., … Von Roenn, J.H. (2009). Palliative cancer care a decade later: accomplishments, the need, next steps – from the American Society of Clinical Oncology. Journal of Clinical Oncology, 27(18), 3052–3058.
   PubMed Web of Science ®Google Scholar
• Friedman, M.M., Bowden, V.R., & Jones, E.G. (2003). Family nursing. Research, theory and practice (5th ed). Upper Saddle River, NJ: Prentice Hall.
   Google Scholar
• Given, B.A., Given, C.W., & Kozachik, S. (2001). Family support in advanced cancer. CA: A Cancer Journal for Clinicians, 51(4), 213–231.
   PubMed Web of Science ®Google Scholar
• Groenvold, M., Klee, M.C., Sprangers, M. a, & Aaronson, N.K. (1997). Validation of the EORTC QLQ-C30 quality of life questionnaire through combined qualitative and quantitative assessment of patient-observer agreement. Journal of Clinical Epidemiology, 50(4), 441–450.
   PubMed Web of Science ®Google Scholar
• Hudson, P., Aranda, S., & McMurray, N. (2001). Randomized controlled trials in palliative care: overcoming the obstacles. International Journal of Palliative Nursing, 7(9), 427–434.
   PubMedGoogle Scholar
• Hudson, P.L., Remedios, C., & Thomas, K. (2010). A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliative Care, 9, 17.
   PubMedGoogle Scholar
• Jenkins, V., Farewell, D., Batt, L., Maughan, T., Branston, L., Langridge, C., Fallowfield, L. (2010). The attitudes of 1066 patients with cancer towards participation in randomised clinical trials. British Journal of Cancer, 103(12), 1801–1807.
   PubMed Web of Science ®Google Scholar
• Jordhøy, M.S., Kaasa, S., Fayers, P., Ovreness, T., Underland, G., & Ahlner-Elmqvist, M. (1999). Challenges in palliative care research; recruitment, attrition and compliance: experience from a randomized controlled trial. Palliative Medicine, 13(4), 299–310.
   PubMed Web of Science ®Google Scholar
• Keller, M., & Henrich, G. (1999). Illness-related distress: Does it mean the same for men and women? Gender aspects in cancer patients ‘ distress and adjustment. Acta Oncologica, 38(6), 747–755.
   PubMed Web of Science ®Google Scholar
• Lazarus, R. (1999). Stress and emotion—a new synthesis. London: Free Association Books.
   Google Scholar
• Miller, K.-L., McKeever, P., & Coyte, P.C. (2003). Recruitment issues in healthcare research: the situation in home care. Health & Social Care in the Community, 11(2), 111–23.
   PubMed Web of Science ®Google Scholar
• Neergaard, M.A., Olesen, F., Jensen, A.B., & Sondergaard, J. (2008). Palliative care for cancer patients in a primary health care setting: Bereaved relatives’ experience, a qualitative group interview study. BMC Palliative Care, 7, 1.
   PubMedGoogle Scholar
• Northouse, L.L., Rosset, T., Phillips, L., Mood, D., Schafenacker, A., & Kershaw, T. (2006). Research with families facing cancer: The challenges of accrual and retention. Research in Nursing & Health, 29, 199–211.
   PubMed Web of Science ®Google Scholar
• Petersen, M.A., Pedersen, L., & Groenvold, M. (2009). Does nonparticipation in studies of advanced cancer lead to biased quality-of-life scores? Journal of Palliative Medicine, 12(11), 1023–1028.
   PubMed Web of Science ®Google Scholar
• Radbruch, L., & Payne, S. (2009). EAPC, White paper on standards and norms for hospice and palliative care in Europe: Part 1. European Journal of Palliative Care, 16(6), 278–289.
   Google Scholar
• Radbruch, L., & Payne, S. (2010). EAPC, White paper on standards and norms for hospice and palliative care in Europe: Part 2. European Journal of Palliative Care, 17(1), 22–33.
   Google Scholar
• Rainbird, K., Perkins, J., Sanson-Fisher, R., Rolfe, I., & Anseline, P. (2009). The needs of patients with advanced, incurable cancer. British Journal of Cancer, 101(5), 759–764.
   PubMed Web of Science ®Google Scholar
• Rinck, C., van den Bos, G., Kleijnen, J., de Haes, H., Schadé, E., & CH, V. (1997). Methodologic issues in effectiveness research on palliative cancer care: a systematic review. Journal of Clinical Oncology, 15(4), 1697–1707.
   PubMed Web of Science ®Google Scholar
• Rydahl-Hansen, S. (2005). Hospitalized patients experienced suffering in life with incurable cancer. Scandinavian Journal of Caring Sciences, 19(3), 213–222.
   PubMed Web of Science ®Google Scholar
• Rydahl-Hansen, S. (2013). Conditions that are significant for advanced cancer patients’ coping with their suffering-as experienced by relatives. Journal of Psychosocial Oncology, 31(3), 334–355.
   PubMed Web of Science ®Google Scholar
• Schildmann, E.K., & Higginson, I.J. (2011). Evaluating psycho-educational interventions for informal carers of patients receiving cancer care or palliative care: strengths and limitations of different study designs. Palliative Medicine, 25(4), 345–356.
   PubMed Web of Science ®Google Scholar
• Sekelja, N., Butow, P.N., & Tattersall, M.H. N. (2010). Bereaved cancer carers’ experience of and preference for palliative care. Supportive Care in Cancer, 18(9), 1219–1228.
   PubMed Web of Science ®Google Scholar
• Smeenk, F.W., van Haastregt, J.C., de Witte, L.P., & Crebolder, H.F. (1998). Effectiveness of home care programmes for patients with incurable cancer on their quality of life and time spent in hospital: systematic review. BMJ (Clinical Research Ed.), 316(7149), 1939–1944.
   PubMed Web of Science ®Google Scholar
• Soelver, L., Oestergaard, B., Rydahl-Hansen, S., & Wagner, L. (2012). Advanced cancer patients’ self-assessed physical and emotional problems on admission and discharge from hospital general wards–a questionnaire study. European Journal of Cancer Care, 21(5), 667–676.
   PubMed Web of Science ®Google Scholar
• Steinhauser, K.E., Christakis, N.A., Clipp, E.C., & Mcintyre, L. (2000). Factors considered inportant at the end of life by patients, family, physicians, and other care providers. JAMA, 284(19), 2476–2482.
   PubMed Web of Science ®Google Scholar
• Strang, V.R., & Koop, P.M. (2003). Factors which influence coping: Home-based family caregiving of persons with advanced cancer. Journal of Palliative Care, 19(2), 107–114.
   PubMed Web of Science ®Google Scholar
• Thomsen, T.G., Hansen, S.R., & Wagner, L. (2011). How to be a patient in a palliative life experience? A qualitative study to enhance knowledge about coping abilities in advanced cancer patients. Journal of Psychosocial Oncology, 29(3), 254–273.
   PubMed Web of Science ®Google Scholar
• Thomsen, T.G., Rydahl-Hansen, S., & Wagner, L. (2010). A review of potential factors relevant to coping in patients with advanced cancer. Journal of Clinical Nursing, 19(23–24), 3410–3426.
   Web of Science ®Google Scholar
• Vachon, M.L. S., Kristjanson, L., & Higginson, I. (1995). Psychosocial issues in palliative care: The patient, the family, and the process and outcome of care the patient's experience with, 10(2), 142–150.
   Google Scholar
• Van Mechelen, W., Aertgeerts, B., De Ceulaer, K., Thoonsen, B., Vermandere, M., Warmenhoven, F., … De Lepeleire, J. (2013). Defining the palliative care patient: a systematic review. Palliative Medicine, 27(3), 197–208.
   PubMed Web of Science ®Google Scholar
• White, C., Gilshenan, K., & Hardy, J. (2008). A survey of the views of palliative care healthcare professionals towards referring cancer patients to participate in randomized controlled trials in palliative care. Supportive Care In Cancer, 16(12), 1397–1405.
   PubMed Web of Science ®Google Scholar
• WHO. (2002). WHO definition of palliative care. Retrieved from http://www.who.int/cancer/palliative/definition/en/. (accessed June 15, 2014).
   Google Scholar
• Wohleber, A.M., McKitrick, D.S., & Davis, S.E. (2012). Designing research with hospice and palliative care populations. The American Journal of Hospice & Palliative Care, 29(5), 335–245.
   PubMed Web of Science ®Google Scholar