Early palliative care for those who care: A qualitative exploration of cancer caregivers’ information needs during hospital stays

European Journal of Cancer Care

Volumn 28, Issue 2, 2019, Pages

  Preisler, Martina ^a   Rohrmoser, Amy ^a   Goerling, Ute ^a   Kendel, Friederike ^b   Bär, Konrad ^a   Riemer, Manuel ^c   Heuse, Silke ^b   Letsch, Anne ^a  

^a CHARITÉ UNIVERSITÄTSMEDIZIN BERLIN   (Germany)

^b BERLIN INSTITUTE OF HEALTH   (Germany)

^c WILFRID LAURIER UNIVERSITY   (Canada)

Author keywords

cancer; caregivers; hospitalisation; information needs; oncology; palliative care

Indexed keywords

ADULT; AGED; ATTITUDE TO HEALTH; CAREGIVER; COPING BEHAVIOR; FEMALE; GERMANY; HUMAN; HUMAN RELATION; INFORMATION SEEKING; INTERPERSONAL COMMUNICATION; LENGTH OF STAY; MALE; MIDDLE AGED; NEEDS ASSESSMENT; NEOPLASM; PALLIATIVE THERAPY; PSYCHOLOGY; STATISTICS AND NUMERICAL DATA; UNIVERSITY HOSPITAL;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; BERLIN; CAREGIVERS; COMMUNICATION; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HOSPITALS, UNIVERSITY; HUMANS; INFORMATION SEEKING BEHAVIOR; LENGTH OF STAY; MALE; MIDDLE AGED; NEEDS ASSESSMENT; NEOPLASMS; PALLIATIVE CARE; PROFESSIONAL-FAMILY RELATIONS;

EID: 85059685626     PISSN: 09615423     EISSN: 13652354     Source Type: Journal    
DOI: 10.1111/ecc.12990     Document Type: Article

References (53)

1. Adams, E., Boulton, M., & Watson, E. (2009). The information needs of partners and family members of cancer patients: A systematic literature review. Patient, Education and Counseling, 77, 179–186. https://doi.org/10.1016/j.pec.2009.03.027z
2. Andreassen, S., Randers, I., Näslund, E., Stockeld, D., & Mattiasson, A.-C. (2005). Family members’ experiences, information needs and information seeking in relation to living with a patient with oesophageal cancer. European Journal of Cancer Care (Engl), 14, 426–434. https://doi.org/10.1111/j.1365-2354.2005.00602.x
3. Applebaum, A. J., & Breitbart, W. (2013). Care for the cancer caregiver: A systematic review. Palliative and Supportive Care, 11, 231–252. https://doi.org/10.1017/S1478951512000594
4. Baer, K., Preisler, M., Rohrmoser, A., Letsch, A., & Goerling, U. (2017). Promotion of self-efficacy of relatives in early integration of supportive/palliative care in oncology: Requirements and opportunities. Zeitschrift Für Palliativmedizin, 18, 203–214. https://doi.org/10.1055/s-0043-105432
5. Beaver, K., & Witham, G. (2007). Information needs of the informal carers of women treated for breast cancer. European Journal of Oncology Nursing, 11, 16–25. https://doi.org/10.1016/j.ejon.2006.01.006
6. Blum, K., & Sherman, D. (2010). Understanding the experience of caregivers: A focus on transitions. Seminars in Oncology Nursing, 26, 243–258. https://doi.org/10.1016/j.soncn.2010.08.005
7. Candy, B., Jones, L., Drake, R., Leurent, B., & King, M. (2011). Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database Systematic Reviews, CD007617, https://doi.org/10.1002/14651858.CD007617
8. Charmaz, K. (2006). Constructiong grounded theory - A practical guide through qualitative analysis. London, UK: SAGE Publications.
9. Chen, S. C., Lai, Y. H., Liao, C. T., Huang, B. S., Lin, C. Y., Fan, K. H., & Chang, J. T. (2014). Unmet supportive care needs and characteristics of family caregivers of patients with oral cancer after surgery. Psychooncology, 23, 569–577. https://doi.org/10.1002/pon.3458
10. Cherny, N., Catane, R., Schrijvers, D., Kloke, M., & Strasser, F. (2010). European Society for Medical Oncology (ESMO) program for the integration of oncology and palliative care: A 5-year review of the designated centers’ incentive program. Annals of Oncology, 21, 362–369. https://doi.org/10.1093/annonc/mdp318
11. den Herder-van der Eerden, M., Hasselaar, J., Payne, S., Varey, S., Schwabe, S., Radbruch, L., … Groot, M. (2017). How continuity of care is experienced within the context of integrated palliative care: A qualitative study with patients and family caregivers in five European countries. Palliative Medicine, 31, 946–955. https://doi.org/10.1177/0269216317697898
12. Dionne-Odom, J. N., Azuero, A., Lyons, K. D., Hull, J. G., Tosteson, T., Li, Z., … Bakitas, M. A. (2015). Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: Outcomes from the ENABLE III randomized controlled trial. Journal of Clinical Oncology, 3, 1446–1452. https://doi.org/10.1200/JCO.2014.58.7824
13. Dougherty, M. (2010). Assessment of patient and family needs during an inpatient oncology experience. Clinical Journal of Oncology Nursing, 14, 301–306. https://doi.org/10.1188/10.CJON.301-306
14. Dumont, S., Turgeon, J., Allard, P., Gagnon, P., Charbonneau, C., & Vézina, L. (2006). Caring for a loved one with advanced cancer: Determinants of psychological distress in family caregivers. Journal of Palliative Medicine, 9, 912–921. https://doi.org/10.1089/jpm.2006.9.912
15. Dunbrack, J. (2005). The information needs of informal caregivers involved in providing support to a critically ill loved one. A synthesis report prepared for Health Canada [Website]. Retrieved from https://www.canada.ca/content/dam/hc-sc/migration/hc-sc/hcs-sss/alt_formats/hpb-dgps/pdf/pubs/2005-info-caregiver-aidant/2005-info-caregiver-aidant-eng.pdf
16. Ekstedt, M., Stenberg, U., Olsson, M., & Ruland, C. M. (2014). Health care professionals’ perspectives of the experiences of family caregivers during in-patient cancer care. Journal of Family Nursing, 20, 462–486. https://doi.org/10.1177/1074840714556179
17. Ferrell, B. R., Temel, J. S., Temin, S., Alesi, E. R., Balboni, T. A., Basch, E. M., … Smith, T. J. (2017). Integration of palliative care into standard oncology care: American Society of Clinical Oncology Clinical Practice Guideline Update. Journal of Clinical Oncology, 35, 96–112. https://doi.org/10.1200/JCO.2016.70.1474
18. Given, B. A., Given, C. W., & Kozachik, S. (2001). Family support in advanced cancer. CA: A Cancer Journal for Clinicians, 51, 213–231. https://doi.org/10.3322/canjclin.51.4.213
19. Given, B. A., Given, C. W., & Sherwood, P. R. (2012). Family and caregiver needs over the course of the cancer trajectory. Journal of Supportive Oncology, 10, 57–64. https://doi.org/10.1016/j.suponc.2011.10.003
20. Glajchen, M. (2004). The emerging role and needs of family caregivers in cancer care. Journal of Supportive Oncology, 2, 145–155
21. Greer, J. A., Pirl, W. F., Jackson, V. A., Muzikansky, A., Lennes, I. T., Heist, R. S., … Temel, J. S. (2012). Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non–small-cell lung cancer. Journal of Clinical Oncology, 30, 394–400. https://doi.org/10.1200/JCO.2011.35.7996
22. Harding, R., & Higginson, I. J. (2003). What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliative Medicine, 17, 63–74. https://doi.org/10.1191/0269216303pm667oa
23. Henriksson, A., & Arestedt, K. (2013). Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: A correlational, cross-sectional study. Palliative Medicine, 27, 639–646. https://doi.org/10.1177/0269216313486954
24. Hudson, P. L., Aranda, S., & Kristjanson, L. J. (2004). Meeting the supportive needs of family caregivers in palliative care: Challenges for health professionals. Journal of Palliative Medicine, 7, 19–25. https://doi.org/10.1089/109662104322737214
25. Janda, M., Eakin, E. G., Walker, D., & Troy, K. (2006). Supportive care needs of people with brain tumours and their carers. Supportive Care in Cancer, 14, 1094–1103. https://doi.org/10.1007/s00520-006-0074-1
26. Lambert, S. D., & Girgis, A. (2017). Unmet supportive care needs among informal caregivers of patients with cancer: Opportunities and challenges in informing the development of interventions. Asia-Pacific Journal of Oncology Nursing, 4, 136–139. https://doi.org/10.4103/2347-5625.204485
27. Lambert, S. D., Harrison, J. D., Smith, E., Bonevski, B., Carey, M., Lawsin, C., … Girgis, A. (2012). The unmet needs of partners and caregivers of adults diagnosed with cancer: A systematic review. BMJ Supportive & Palliative Care, 2, 224–230. https://doi.org/10.1136/bmjspcare-2012-000226
28. Lindholm, L., Mäkelä, C., Rantanen-Siljamäki, S., & Nieminen, A. L. (2007). The role of significant others in the care of women with breast cancer. International Journal of Nursing Practice, 13, 173–181. https://doi.org/10.1111/j.1440-172X.2007.00623.x
29. Longacre, M. L., Galloway, T. J., Parvanta, C. F., & Fang, C. Y. (2015). Medical communication-related informational need and resource preferences among family caregivers for head and neck cancer patients. Journal of Cancer Education, 30, 786–791. https://doi.org/10.1007/s13187-015-0814-3
30. McCarthy, B. (2011). Family members of patients with cancer: What they know, how they know and what they want to know. European Journal of Oncology Nursing, 15, 428–441. https://doi.org/10.1016/j.ejon.2010.10.009
31. McDonald, J., Swami, N., Hannon, B., Lo, C., Pope, A., Oza, A., … Zimmermann, C. (2017). Impact of early palliative care on caregivers of patients with advanced cancer: Cluster randomised trial. Annals of Oncology, 28, 163–168. https://doi.org/10.1093/annonc/mdw438
32. McDonald, J., Swami, N., Pope, A., Hales, S., Nissim, R., Rodin, G., … Zimmermann, C. (2018). Caregiver quality of life in advanced cancer: Qualitative results from a trial of early palliative care. Palliative Medicine, 32, 69–78. https://doi.org/10.1177/0269216317739806
33. Mey, G., & Mruck, K. (2010). Handbuch qualitative forschung in der psychologie. Wiesbaden: VS Springer.
34. Morris, S. M., & Thomas, C. (2001). The carer’s place in the cancer situation: Where does the carer stand in the medical setting? European Journal of Cancer Care (Engl), 10, 87–95. https://doi.org/10.1046/j.1365-2354.2001.00249.x
35. Morris, S. M., & Thomas, C. (2002). The need to know: Informal carers and information. European Journal of Cancer Care (Engl), 11, 183–187. https://doi.org/10.1046/j.1365-2354.2002.00337.x
36. Murray, S. A., Kendall, M., Boyd, K., Grant, L., Highet, G., & Sheikh, A. (2010). Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: Secondary analysis of serial qualitative interviews. BMJ, 340, c2581. https://doi.org/10.1136/bmj.c2581
37. Northouse, L., Williams, A.-L., Given, B., & McCorkle, R. (2012). Psychosocial care for family caregivers of patients with cancer. Journal of Clinical Oncology, 30, 1227–1234. https://doi.org/10.1200/JCO.2011.39.5798
38. Palos, G. R., Mendoza, T. R., Liao, K. P., Anderson, K. O., Garcia-Gonzalez, A., Hahn, K., … Cleeland, C. S. (2011). Caregiver symptom burden: The risk of caring for an underserved patient with advanced cancer. Cancer, 117, 1070–1079. https://doi.org/10.1002/cncr.25695
39. Patton, M. Q. (2015). Qualitative research and evaluation methods: Integrating theory and practice, 4th ed. Thousand Oaks, CA: SAGE Publications.
40. Preisler, M., & Goerling, U. (2016). Relatives of cancer patients. Onkologe, 22, 336–341. https://doi.org/10.1007/s00761-016-0006-8
41. Preisler, M., Heuse, S., Riemer, M., Kendel, F., & Letsch, A. (2018). Early integration of palliative cancer care: Patients’ and caregivers’ challenges, treatment preferences, and knowledge of illness and treatment throughout the cancer trajectory. Supportive Care in Cancer, 26, 921–931. https://doi.org/10.1007/s00520-017-3911-5
42. Rabow, M. W., Hauser, J. M., & Adams, J. (2004). Supporting family caregivers at the end of life. JAMA, 291, 483. https://doi.org/10.1001/jama.291.4.483
43. Rha, S. Y., Park, Y., Song, S. K., Lee, C. E., & Lee, J. (2015). Caregiving burden and the quality of life of family caregivers of cancer patients: The relationship and correlates. European Journal of Oncology Nursing, 19, 376–382. https://doi.org/10.1016/j.ejon.2015.01.004
44. Rogers, A., Karlsen, S., & Addington-Hall, J. (2000). ‘All the services were excellent. It is when the human element comes in that things go wrong’: Dissatisfaction with hospital care in the last year of life. Journal of Advanced Nursing, 31, 768–774. https://doi.org/10.1046/j.1365-2648.2000.01347.x
45. Sharpe, L., Butow, P., Smith, C., McConnell, D., & Clarke, S. (2005). The relationship between available support, unmet needs and caregiver burden in patients with advanced cancer and their carers. Psychooncology, 114, 102–114. https://doi.org/10.1002/pon.825
46. Shaw, J., Harrison, J., Young, J., Butow, P., Sandroussi, C., Martin, D., & Solomon, M. (2013). Coping with newly diagnosed upper gastrointestinal cancer: A longitudinal qualitative study of family caregivers’ role perception and supportive care needs. Supportive Care in Cancer, 21, 749–756. https://doi.org/10.1007/s00520-012-1575-8
47. Smith, T. J., Temin, S., Alesi, E. R., Abernethy, A. P., Balboni, T. A., Basch, E. M., … Von Roenn, J. H. (2012). American Society of Clinical Oncology provisional clinical opinion: The integration of palliative care into standard oncology care. Journal of Clinical Oncology, 30, 880–887. https://doi.org/10.1200/JCO.2011.38.5161
48. Spatuzzi, R., Giulietti, M. V., Ricciuti, M., Merico, F., Meloni, C., Fabbietti, P., … Vespa, A. (2017). Quality of life and burden in family caregivers of patients with advanced cancer in active treatment settings and hospice care: A comparative study. Death Studies, 41, 276–283. https://doi.org/10.1080/07481187.2016.1273277
49. Thomas, C., & Morris, S. M. (2002). Informal carers in cancer contexts. European Journal of Cancer Care (Engl), 11, 178–182. https://doi.org/10.1046/j.1365-2354.2002.00336.x
50. Valeberg, B. T., & Grov, E. K. (2013). Symptoms in the cancer patient - of importance for their caregivers’ quality of life and mental health? European Journal of Oncology Nursing, 17, 46–51. https://doi.org/10.1016/j.ejon.2012.01.009
51. Walshe, C., Roberts, D., Appleton, L., Calman, L., Large, P., Lloyd-Williams, M., & Grande, G. (2017). Coping well with advanced cancer: A serial qualitative interview study with patients and family carers. PLoS ONE, 12, e0169071. https://doi.org/10.1371/journal.pone.0169071
52. World Health Organisation. (2012). WHO Definition of Palliative Care [Website]. Retrieved from http://www.who.int/cancer/palliative/definition/en/
53. Zimmermann, C., Swami, N., Krzyzanowska, M., Leighl, N., Rydall, A., Rodin, G., … Hannon, B. (2016). Perceptions of palliative care among patients with advanced cancer and their caregivers. Canadian Medical Association Journal, 12(188), E217–E227. https://doi.org/10.1503/cmaj.151171