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A survey of the supportive care needs of informal caregivers of adult bone marrow transplant patients

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Abstract

Purpose

This study aims to describe the supportive care needs of informal caregivers (ICG) of adult bone marrow transplant (BMT) patients. In addition, we explored relationships between levels of unmet need, psychological morbidity and patient and ICG characteristics.

Methods and sample

We invited patients within 24 months of BMT to participate in a cross-sectional survey. Consenting patients asked their ICG to complete and return the questionnaire booklet. Measures included the Supportive Care Needs Survey Partners and Carers and General Health Questionnaire.

Key results

Two hundred patients were approached, and 98 completed questionnaires were received (response rate = 49 %). We found high unmet need and psychological morbidity among ICGs and an association between ICG unmet need and psychological morbidity. Patient functioning, particularly anxiety and depression, sexual dysfunction and resumption of usual activities impacted on ICG unmet need and psychological morbidity. No associations were found between ICG unmet need and psychological morbidity and the following variables: type of BMT, time from BMT, ICG gender, number of dependents and patient age.

Conclusion

ICG of BMT patients have high levels of unmet need and psychological morbidity in the months that follow a BMT. This highlights the importance of thorough needs assessment to ensure limited resources are targeted to those most in need.

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References

  1. Department of Health (2000) The NHS plan. London

  2. Department of Health (2007) The cancer reform strategy. London.

  3. Mosher C, Redd W, Rini CM, Burkhalter JE, DuHamel KN (2009a) Physical, psychological, and social sequelae following hematopoietic stem cell transplantation: a review of the literature. Psycho-Oncology 18(2):113–127

    Article  Google Scholar 

  4. Fife BL, Monahan PO, Abonour R, Wood LL, Stump TE (2008) Adaptation of family caregivers during the acute phase of adult BMT. Bone Marrow Transplantation 42:1–8

    Article  Google Scholar 

  5. Krishnasamy M, Plant H (2004) Carers, caring and cancer related fatigue. In: Armes J, Krishnasamy M, Higginson I (eds) Fatigue in cancer. Oxford University Press, Oxford

    Google Scholar 

  6. Cribb A (2001) Knowledge and caring: A philosophical and personal perspective. In: Corner J, Bailey C (eds) Cancer nursing: Care in context. Blackwell Science, Oxford

    Google Scholar 

  7. Thomas C, Morris SM, Harman JC (2002) Companions through cancer: the care given by informal carers in cancer contexts. Soc Sci Med 54(4):529–544

    Article  PubMed  Google Scholar 

  8. Bee PE, Barnes P, Luker KA (2008) A systematic review of informal caregivers’ needs in providing home-based end-of-life care to people with cancer. J Clin Nurs 1–15

  9. Laizner AM, Shegda Yost LM, Barg F, McCorkle R (1993) Needs of family caregivers of persons with cancer: a review. Semin Oncol Nurs 9(2):114–120

    Article  PubMed  CAS  Google Scholar 

  10. Wilson K, Avir Z (2008) Cancer and disability benefits: a synthesis of qualitative findings on advice and support. Psycho-Oncology 17:421–429

    Article  PubMed  Google Scholar 

  11. Ussher JM, Sandoval M (2008) Gender differences in the construction and experience of cancer care: the consequences of the gendered positioning of carers. Psychol Heal 23(8):945–963

    Article  Google Scholar 

  12. Carter PA (2003) Family caregivers’ sleep loss and depression over time. Cancer Nurs 26(4):253–259

    Article  PubMed  Google Scholar 

  13. Papastavrou E, Charalambous A, Tsangari H (2009) Exploring the other side of cancer care: the informal caregiver. Eur J Oncol Nurs 13:128–136

    Article  PubMed  Google Scholar 

  14. Gilbert E, Ussher JM, Perz J (2008) Renegotiating sexuality and intimacy in the context of cancer: the experiences of carers. Arch Sex Behav 39(4):998–1009

    Article  PubMed  Google Scholar 

  15. Grbich C, Maddocks I, Parker D (2001) Family caregivers, their needs and home-based palliative cancer services. J Fam Stud 7:171–188

    Article  Google Scholar 

  16. Bowman K, Rose J, Deimling GT (2006) Appraisal of the cancer experience by family members and survivors in long term survivorship. Psycho-Oncology 15:834–845

    Article  PubMed  Google Scholar 

  17. Hagedoorn M, Sanderman R, Bolks HN, Tuinstra J (2008) Distress in couples coping with cancer: a meta-analysis and critical review of role and gender effects. Psychol Bull 134(1):1–30

    Article  PubMed  Google Scholar 

  18. Soothill K, Morris SM, Harman JC, Francis B, Thomas C, McIllmurray MB (2001) Informal carers of cancer patients: what are their unmet psychosocial needs? Health Soc Care Community 9(6):464–475

    Article  PubMed  CAS  Google Scholar 

  19. Hodgkinson K, Butow P, Hunt GE, Pendlebury S, Hobbs KM, Lo SK, Wain G (2007) The development and evaluation of a measure to assess cancer survivors’ unmet supportive care needs: the CaSUN (Cancer Survivors’ Unmet Needs measure). Psycho-Oncology 16(9):796–804

    Google Scholar 

  20. Gaston-Johansson F, Lachica EM, Fall-Dickson JM, Kennedy MJ (2004) Psychological distress, fatigue, burden of care, and quality of life in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation. Oncol Nurs Forum 31(6):1161–1169

    Article  PubMed  Google Scholar 

  21. Bishop MM, Beaumont JL, Hahn EA, Cella D, Andrykowski MA, Brady MJ, Horowitz MM, Sobocinski KA, Rizzo JD, Wingard JR (2007) Late effects of cancer and hematopoietic stem cell transplantation on spouses or partners compared with survivors and survivor matched controls. J Clin Oncol 25(11):1403–1411

    Article  PubMed  Google Scholar 

  22. Eriksson E, Lauri S (2000) Informational and emotional support for cancer patients’ relatives. Eur J Cancer Care 9:8–15

    Article  CAS  Google Scholar 

  23. Soothill K, Morris SM, Thomas C, Harman JC, Francis B, McIllmurra MB (2003) The universal, situational, and personal needs of cancer patients and their main carers. Eur J Oncol Nurs 7(1):5–13

    Article  PubMed  CAS  Google Scholar 

  24. Yun YH, Rhee YS, Kang IO, Lee JS, Bang SM, Lee WS, Kim JS, Kim YS, Shin SW, Hong YS (2005) Economic burdens and quality of life of family caregivers of cancer patients. Oncology 68(2):107–144

    Article  PubMed  Google Scholar 

  25. Dumont 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. J Palliat Med 9(4):912–921

    Article  PubMed  Google Scholar 

  26. Carr W, Wolfe S (1976) Unmet needs as sociomedical indictors. Int J Heal Serv 6:417–430

    Article  CAS  Google Scholar 

  27. Bonevski B, Sanson-Fisher RW, Girgis A, Burton L, Cook P, Boyes A, Supportive Care Review Grou et al (2000) Evaluation of an instrument to assess the needs of patients with cancer. Cancer 88(1):217–225

    Article  PubMed  CAS  Google Scholar 

  28. Harding R, Higginson IJ (2003) What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med 17(1):63–74

    Article  PubMed  CAS  Google Scholar 

  29. Plant H, Sherwin A, Moore S, Medina J, Ream E, Richardson A (2006) Developing and evaluating a supportive nursing intervention for family members of people with lung cancer. Kings College London

  30. Morris S, Thomas C, Soohill K (2001) The carer’s place in the cancer situation: where does the carer stand in the medical setting? Eur J Cancer Care 10(2):87–95

    Article  CAS  Google Scholar 

  31. Langer S, Abrams J, Syrjala K (2003) Caregiver and patient marital satisfaction and affect following hematopoietic stem cell transplantation: a prospective, longitudinal investigation. Psychooncology 12(3):239–253

    Article  PubMed  Google Scholar 

  32. Langer SL, Yi JC, Storer BE, Syrjala KL (2009) Marital adjustment, satisfaction and dissolution among hematopoietic stem cell transplant patients and spouses: a prospective, five-year longitudinal investigation. Psycho-Oncology 12:239–253, 2003

    Article  Google Scholar 

  33. Eldredge DH, Nail LM, Maziarz RT, Hansen LK, Ewing D, Archbold PG (2006) Explaining family caregiver role strain following autologous blood and marrow transplantation. 24(3):53–74

  34. Williams L (2007) Whatever it takes: informal caregiving dynamics in blood and marrow transplantation. Oncol Nurs Forum 34(2):379–387

    Article  PubMed  Google Scholar 

  35. Keogh F, O’Riordan J, McNamara C, Duggan C, McCann SR (1998) Psychosocial adaptation of patients and families following bone marrow transplantation: a prospective, longitudinal study. Bone Marrow Transplant 22(9):905–911

    Article  PubMed  CAS  Google Scholar 

  36. Girgis S, Lambert S, Lecathelinais C (2011) The Supportive care needs survey for partners and carers of cancer survivors: development and psychometric evaluation. Psycho-Oncology 20(4):387–393

    Article  PubMed  Google Scholar 

  37. King M, Jones L, Nazareth I (2006) Concern and continuity in the care of cancer patients and their carers: a multimethod approach to enlightened management. SDO/13E/2001 London

  38. Goldberg D, Williams P (1988) A user’s guide to the general health questionnaire. nferNelson Publishing Company Ltd, London

    Google Scholar 

  39. Murphy H, Lloyd K (2007) Civil conflict in Northern Ireland and the prevalence of psychiatric disturbance across the United Kingdom: a population study using the British household panel survey and the Northern Ireland household panel survey. Int J Soc Psychiatr 53(5):397–407

    Article  Google Scholar 

  40. Graap H, Bleich S, Herbst F, Scherzinger C, Trostmann Y, Wancata J, de Zwaan M (2008) The needs of carers: a comparison between eating disorders and schizophrenia. Soc Psychiatr Psychiatr Epidemiol 43(10):800–807

    Article  Google Scholar 

  41. Scott Baker K, Rajotte EJ (2012) Late effects after treatment of leukaemia. In Estey. E (ed) Leukaemia and related diseases Humana

  42. Armes J, Crowe M, Colbourne L, Morgan H, Murrells T, Oakley C, Palmer N, Ream E, Young A, Richardson A (2009) Patients’ supportive care needs beyond the end of cancer treatment: a prospective, longitudinal survey. J Clin Oncol. Early Release [accessed online 02.12.09] http://jco.ascopubs.org/cgi/content/abstract/JCO.2009.22.5151v1

  43. Bowling A (2002) Research methods in health, 2nd edn. Open University Press, Berkshire

    Google Scholar 

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Acknowledgments

The author would like to thank Professor Girgis and her team, especially Dr Sylvie Lambert, for allowing the use of the SCNS-P&C whilst it was still in development and Dr Peter Milligan for statistical advice.

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Correspondence to J. Armoogum.

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Armoogum, J., Richardson, A. & Armes, J. A survey of the supportive care needs of informal caregivers of adult bone marrow transplant patients. Support Care Cancer 21, 977–986 (2013). https://doi.org/10.1007/s00520-012-1615-4

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  • DOI: https://doi.org/10.1007/s00520-012-1615-4

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