Hostname: page-component-586b7cd67f-rdxmf Total loading time: 0 Render date: 2024-11-25T23:06:50.701Z Has data issue: false hasContentIssue false
  • English
  • Français

Unmet needs of caregivers of severely affected multiple sclerosis patients: A qualitative study

Published online by Cambridge University Press:  17 June 2015

Heidrun Golla ,
Stephanie Mammeas ,
Maren Galushko ,
Holger Pfaff  and
Raymond Voltz
Heidrun Golla*
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany
Stephanie Mammeas
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany
Maren Galushko
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany
Holger Pfaff
Affiliation:
Institute for Medical Sociology, Health Services Research and Rehabilitation Science (IMHR), Faculty of Human Science and Faculty of Medicine, University of Cologne, Cologne, Germany
Raymond Voltz
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany Center for Integrated Oncology Cologne/Bonn, University Hospital of Cologne, Cologne, Germany Center for Clinical Trials, University Hospital of Cologne, Cologne, Germany
*
Address correspondence and reprint requests to: Heidrun Golla, Department of Palliative Medicine, the University Hospital of Cologne, Kerpener Strasse 62, 50924 Cologne, Germany. E-mail: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Multiple sclerosis (MS) patients' caregivers are sometimes considered as “hidden patients.” How much more this might be true for caregivers of severely affected MS patients has so far been scarcely studied. Palliative care also addressing relatives' needs might therefore be very relevant for these caregivers. However, we do not yet know which unmet needs they have and how these could be met. Our aim was to gain an insight into the subjectively unmet needs of caregivers of severely affected MS patients in Germany.

Method:

The study employed a qualitative cross-sectional approach for assessing unmet needs. Twelve caregivers of severely affected MS patients were recruited using a convenience sampling approach. Face-to-face interviews were conducted, audiotaped, and transcribed verbatim, followed by qualitative content analysis.

Results:

Unmet needs were sorted into the following categories: “relationship to physician,” “individual support by the healthcare system,” “relationship to the individual severely affected by MS,” “end-of-life issues,” “self-care,” and “higher awareness of MS.” Caregivers tended to group the unmet needs of their care recipients with their own and rarely focused on their own wishes and restrictions.

Significance of Results:

A close patient–caregiver dyad makes it difficult to differentiate unmet caregiver needs. However, the palliative care approach might help caregivers of severely affected MS patients by answering questions on disease progress and end-of-life issues, as well as by offering respite care, support for self-care, and help in preserving one's identity, and also anticipating the time to come after the death.

Keywords

CaregiversSevere multiple sclerosisPalliative careQualitative study
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 6 , December 2015 , pp. 1685 - 1693
Copyright
Copyright © Cambridge University Press 2015 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Akkuş, Y. (2011). Multiple sclerosis patient caregivers: The relationship between their psychological and social needs and burden levels. Disability and Rehabilitation, 33(4), 326–333.Google Scholar
Aronson, K.J. (1997). Quality of life among persons with multiple sclerosis and their caregivers. Neurology, 48(1), 74–80.Google Scholar
Boeije, H.R., Duijnstee, M.S. & Grypdonck, M.H. (2003). Continuation of caregiving among partners who give total care to spouses with multiple sclerosis. Health & Social Care in the Community, 11(3), 242–252.Google Scholar
Bogosian, A., Moss-Morris, R., Yardley, L., et al. (2009). Experiences of partners of people in the early stages of multiple sclerosis. Multiple Sclerosis, 15(7), 876–884.Google Scholar
Buchanan, R. & Huang, C. (2011). Health-related quality of life among informal caregivers assisting people with multiple sclerosis. Disability and Rehabilitation, 33(2), 113–121.Google Scholar
Buchanan, R.J., Radin, D. & Huang, C. (2011). Caregiver burden among informal caregivers assisting people with multiple sclerosis. International Journal of MS Care, 13(2), 176–183.Google Scholar
Buecken, R., Galushko, M., Golla, H., et al. (2012). Patients feeling severely affected by multiple sclerosis: How do patients want to communicate about end-of-life issues? Patient Education and Counseling, 88(2), 318–324.Google Scholar
Buhse, M. (2008). Assessment of caregiver burden in families of persons with multiple sclerosis. The Journal of Neuroscience Nursing, 40(1), 25–31.Google Scholar
Champagne, M. & Mongeau, S. (2012). Effects of respite care services in a children's hospice: The parents' point of view. Journal of Palliative Care, 28(4), 245–251.Google Scholar
Chipchase, S.Y. & Lincoln, N.B. (2001). Factors associated with carer strain in carers of people with multiple sclerosis. Disability and Rehabilitation, 23(17), 768–776.Google Scholar
Corbin, J. & Strauss, A. (2008). Basics of qualitative research, techniques and procedures for developing grounded theory. London: Sage Publications.Google Scholar
Dunn, J. (2010). Impact of mobility impairment on the burden of caregiving in individuals with multiple sclerosis. Expert Review of Pharmacoeconomics & Outcomes Research, 10(4), 433–440.Google Scholar
Edmonds, P., Vivat, B., Burman, R., et al. (2007 a). Loss and change: Experiences of people severely affected by multiple sclerosis. Palliative Medicine, 21(2), 101–107.Google Scholar
Edmonds, P., Vivat, B., Burman, R., et al. (2007 b). “Fighting for Everything”: Service experiences of people severely affected by multiple sclerosis. Multiple Sclerosis, 13(5), 660–667.Google Scholar
Edmonds, P., Hart, S., Wei, G., et al. (2010). Palliative care for people severely affected by multiple sclerosis: Evaluation of a novel palliative care service. Multiple Sclerosis, 16(5), 627–636.Google Scholar
Finlayson, M., Garcia, J.D. & Preissner, K. (2008). Development of an educational programme for caregivers of people aging with multiple sclerosis. Occupational Therapy International, 15(1), 4–17.Google Scholar
Flick, U. (2000). Episodic interviewing. In Qualitative researching with text, image and sound a practical handbook, Vol. 1. Bauer, M.W. & Gaskell, G. (eds.), pp. 75–92. London: Sage Publications.Google Scholar
Galushko, M., Golla, H., Strupp, J., et al. (2014). Unmet needs of patients feeling severely affected by multiple sclerosis in Germany: A qualitative study. Palliative Medicine, 17(3), 274–281.CrossRefGoogle ScholarPubMed
Golla, H., Galushko, M., Pfaff, H., et al. (2012). Unmet needs of severely affected multiple sclerosis patients: The health professionals' view. Palliative Medicine, 26(2), 139–151.Google Scholar
Golla, H., Galushko, M., Pfaff, H., et al. (2014). Multiple sclerosis and palliative care: Perceptions of severely affected multiple sclerosis patients and their health professionals. A qualitative study. BMC Palliative Care, 13(1), 11.Google Scholar
Gulick, E.E. (1998). Symptom and activities of daily living trajectory in multiple sclerosis: A 10-year study. Nursing Research, 47(3), 137–146.Google Scholar
Gupta, S., Goren, A., Phillips, A.L., et al. (2012). Self-reported burden among caregivers of patients with multiple sclerosis. International Journal of MS Care, 14(4), 179–187.Google Scholar
Higginson, I.J., Hart, S., Silber, E., et al. (2006). Symptom prevalence and severity in people severely affected by multiple sclerosis. Journal of Palliative Care, 22(3), 158–165.CrossRefGoogle ScholarPubMed
Higginson, I.J., Hart, S., Burman, R., et al. (2008). Randomised controlled trial of a new palliative care service: Compliance, recruitment and completeness of follow-up. BMC Palliative Care, 7, 7.Google Scholar
Higginson, I.J., McCrone, P., Hart, S.R., et al. (2009). Is short-term palliative care cost-effective in multiple sclerosis? A randomized phase II trial. Journal of Pain and Symptom Management, 38(6), 816–826.CrossRefGoogle ScholarPubMed
Hughes, N., Locock, L. & Ziebland, S. (2013). Personal identity and the role of “carer” among relatives and friends of people with multiple sclerosis. Social Science & Medicine, 96, 78–85.CrossRefGoogle ScholarPubMed
Janssens, A.C., van Doorn, P.A., de Boer, J.B., et al. (2003). Impact of recently diagnosed multiple sclerosis on quality of life, anxiety, depression and distress of patients and partners. Acta Neurologica Scandinavica, 108(6), 389–395.Google Scholar
Knight, R.G., Devereux, R.C. & Godfrey, H.P. (1997). Psychosocial consequences of caring for a spouse with multiple sclerosis. Journal of Clinical and Experimental Neuropsychology, 19(1), 7–19.CrossRefGoogle ScholarPubMed
Kouzoupis, A.B., Paparrigopoulos, T., Soldatos, M., et al. (2010). The family of the multiple sclerosis patient: A psychosocial perspective. International Review of Psychiatry, 22(1), 83–89.Google Scholar
Kümpfel, T., Hoffmann, L.A., Pöllmann, W., et al. (2007). Palliative care in patients with severe multiple sclerosis: Two case reports and a survey among German MS neurologists. Palliative Medicine, 21(2), 109–114.Google Scholar
Legewie, H. (1994). Globalauswertung von Texten. In Texte verstehen: Konzepte, methoden, werkzeuge, Vol, I, Böhm, A. et al. (eds.), pp. 100–114. Konstanz: Universitätsverlag Konstanz.Google Scholar
Mayring, P. (2004). Qualitative content analysis. In A companion to qualitative research, Vol. 1. Flick, E. et al. (eds.), pp. 159–176. London: Sage Publications.Google Scholar
McIlfatrick, S. (2007). Assessing palliative care needs: Views of patients, informal carers and healthcare professionals. Journal of Advanced Nursing, 57(1), 77–86.Google Scholar
McKeown, L.P., Porter-Armstrong, A.P. & Baxter, G.D. (2003). The needs and experiences of caregivers of individuals with multiple sclerosis: A systematic review. Clinical Rehabilitation, 17(3), 234–248.Google Scholar
O'Hara, L., de Souza, L. & Ide, L. (2004). The nature of care giving in a community sample of people with multiple sclerosis. Disability and Rehabilitation, 26(24), 1401–1410.Google Scholar
Pakenham, K.I. (2005). The positive impact of multiple sclerosis (MS) on carers: Associations between carer benefit finding and positive and negative adjustment domains. Disability and Rehabilitation, 27(17), 985–997.Google Scholar
Patti, F., Amato, M.P., Battaglia, M.A., et al. (2007). Caregiver quality of life in multiple sclerosis: A multicentre Italian study. Multiple Sclerosis, 13(3), 412–419.Google Scholar
Pfleger, C.C., Flachs, E.M. & Koch-Henriksen, N. (2010). Social consequences of multiple sclerosis, Part 2: Divorce and separation: A historical prospective cohort study. Multiple Sclerosis, 16(7), 878–882.Google Scholar
Pope, C., Ziebland, S. & Mays, N. (2006). Analyzing qualitative data. In Qualitative research in health care, Vol. 3. Pope, C. & Mays, N. (eds.), pp. 63–81. Hoboken, NJ: Blackwell Publishing.Google Scholar
Rivera-Navarro, J., Benito-León, J., Oreja-Guevara, C., et al. (2009). Burden and health-related quality of life of Spanish caregivers of persons with multiple sclerosis. Multiple Sclerosis, 15(11), 1347–1355.CrossRefGoogle ScholarPubMed
Seeber, A.A., Hijdra, A., Vermeulen, M., et al. (2012). Discussions about treatment restrictions in chronic neurological diseases: A structured review. Neurology, 78(8), 590–597.CrossRefGoogle Scholar
Sherman, T.E., Rapport, L.J., Hanks, R.A., et al. (2007). Predictors of well-being among significant others of persons with multiple sclerosis. Multiple Sclerosis, 13(2), 238–249.Google Scholar
Soothill, K., Morris, S.M., Thomas, C., et al. (2003). The universal, situational, and personal needs of cancer patients and their main carers. European Journal of Oncology Nursing, 7(1), 5–13.Google Scholar
Strupp, J., Hartwig, A., Golla, H., et al. (2012). Feeling severely affected by multiple sclerosis: What does this mean? Palliative Medicine, 26(8), 1001–1010.Google Scholar
Strupp, J., Golla, H., Galushko, M., et al. (2014 a). Self-rating makes the difference: Idenrifying palliative care needs of patients feeling severely affected by multiple sclerosis. Palliative & Supportive Care, 22, 1–8.Google Scholar
Strupp, J., Romotzky, V., Galushko, M., et al. (2014 b). Palliative care for severely affected patients with multiple sclerosis: When and why? Results of a Delphi survey of health care professionals. Journal of Palliative Medicine, 17(10), 1128–1136.Google Scholar
Tong, A., Sainsbury, P. & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357.Google Scholar
Toon, P.D. & Southgate, L.J. (1987). The doctor, the patient and the relative: An exploratory survey of doctor–relative relationships. Family Practice, 4(3), 207–211.Google Scholar
Voltz, R. (2010). Palliative care for multiple sclerosis: A counter-intuitive approach? Multiple Sclerosis, 16(5), 515–517.Google Scholar
WHO Definition of Palliative Care (2002). Available from http://www.who.int/cancer/palliative/definition/en.Google Scholar
Wilson, E., Seymour, J. & Aubeeluck, A. (2011). Perspectives of staff providing care at the end of life for people with progressive long-term neurological conditions. Palliative & Supportive Care, 9(4), 377–385.Google Scholar
Wollin, J.A., Yates, P.M. & Kristjanson, L.J. (2006). Supportive and palliative care needs identified by multiple sclerosis patients and their families. International Journal of Palliative Nursing, 12(1), 20–26.Google Scholar