The experience of caring for a dying client with intellectual disabilities. A qualitative study with direct-caregivers

Hanneke J. W. Bulsink, Jean Jacques Georges

Department Clinical Health Sciences, University Utrecht, Medical Services, Fatima Zorg, The Netherlands.
University of Applied Sciences, Utrecht, The Netherlands.

DOI: 10.4236/ojn.2013.38078                

Abstract

Background: Caregivers experience problems when caring for people with intellectual disabilities who are terminally ill. Aim: The aim of this study is to gain a deeper understanding of the experience of the caregiver when caring for a person with intellectual disabilities who is terminally ill and what influences this experience. Design: A qualitative research was carried out following the principles of Grounded Theory (GT) method, through fifteen interviews with caregivers in a living facility with continuous care. Results: The results show how caregivers strive to create meaningful moments for their client during the last period of his life. Since very few of the clients can clearly express their wishes and feelings, continuous observation is required of the caregivers for the interpretation of small signals of their clients. In that way, the appropriateness of their actions can be made certain. The results show that because of their involvement, caregivers are able to recognize clients’ signals. When a client is dying, the special atmosphere created on the ward contributes to coping with the situation and a positive experience. Conclusion: Direct-caregivers caring for a client with an intellectual disability who is terminally ill, experience an intense period of insecurity and also a special period meaningful when caring a dying client with intellectual disabilities. Their relationship with the client makes them to be more able to strive for client’s comfort. The results also show that some factors such as enough staff, clear and open communication with the physician and support of the manager contribute to the quality of palliative care on the ward.

Keywords

Dying; Intellectual Disability; Palliative Care; Caregivers; Experiences

Conflicts of Interest

The authors declare no conflicts of interest.

References

[1]	McCallion, P. and Nickle, T. (2008) Individuals with developmental disabilities and their caregivers. Journal of Gerontological Social Work, 50, 245-266. http://dx.doi.org/10.1080/01634370802137959
[2]	Ellison, N.M. and Rosielle, D. (2008) Palliative care for adults with developmental disabilities #192. Journal of Palliative Medicine, 11, 1262-1263. http://dx.doi.org/10.1089/jpm.2008.9830
[3]	Li, S. and Ng, J. (2008) End-of-life care: Nurses’ experiences in caring for dying patients with profound learning disabilities—A descriptive case study. Palliative Medicine, 22, 949-955. http://dx.doi.org/10.1177/0269216308096905
[4]	Friedman, S.L., Choueiri, R. and Gilmore, D. (2008) Staff carers’ understanding of end of life care. Journal of Policy and Practice in Intellectual Disabilities, 5, 56-64. http://dx.doi.org/10.1111/j.1741-1130.2007.00142.x
[5]	Watchman, K. (2005) Practitioner-raised issues and endof-life care for adults with down syndrome and dementia. Journal of Policy and Practice in Intellectual Disabilities, 2, 156-162. http://dx.doi.org/10.1111/j.1741-1130.2005.00026.x
[6]	Tuffrey-Wijne, I. (2002) The palliative care needs of people with intellectual disabilities: A case study. International Journal of Palliative Nursing, 8, 222-232.
[7]	de Haan, K. and van Rossum, N. (2010) Richtlijn: Palliatieve zorg voor mensen met een verstandelijke beperking. Landelijke richtlijn versie 1.0. Redactie Palliatieve Zorg: Richtlijnen voor de Praktijk/IKPallialine/VIKC.
[8]	Tuffrey-Wijne, I., Hogg, J. and Curfs, L. (2007) End-of-life and palliative care for people with intellectual disabilities who have cancer or other life-limiting illness: A review of the literature and available resources. Journal of Applied Research in Intellectual Disabilities, 20, 331-344. http://dx.doi.org/10.1111/j.1468-3148.2006.00350.x
[9]	Ng, J. and Li, S. (2003) A survey exploring the educational needs of care practitioners in learning disability (LD) settings in relation to death, dying and people with learning disabilities. European Journal of Cancer Care, 12, 12-19. http://dx.doi.org/10.1046/j.1365-2354.2003.00323.x
[10]	Folkestad, H. and Folkestad, L. (2008) The sociology of acceptance revisited: “There must have been something because I grieve so!”. Journal of Intellectual & Developmental Disability, 46, 427-435. http://dx.doi.org/10.1352/2008.46:427-435
[11]	Donovan, J. (2002) Learning disability nurses’ experiences of being with clients who may be in pain. Journal of Advanced Nursing, 38, 458-466. http://dx.doi.org/10.1046/j.1365-2648.2002.02207.x
[12]	De Maeyer, J. and Maes, B. (2010) Palliatieve zorg voor mensen met ernstige meervoudige beperkingen. Eindrapport. Centrum voor Gezinsen Orthopedagogiek KULeuven & Multiplus, Leuven.
[13]	Holloway, I. and Wheeler, S. (2002) Qualitative research in nursing. Blackwell Science, Oxford.
[14]	Charmaz, K. (2006) Constructing grounded theory. A practical guide through qualitative analysis. Sage Publications, London.
[15]	Creswell, J.W. (2007) Qualitative inquiry & research design. Sage Publications, California.
[16]	Verbi (1998) Winmax. www.winmax.de
[17]	Dosen, A. (2005) Psychische stoornissen, gedragsproblemen en verstandelijke handicap. Een integratieve benadering bij kinderen en volwassenen. Van Gorcum, Assen.
[18]	Woittiez, I. (SCP) and Ras, M. (SCP) Hoe vaak komt een verstandelijke handicap voor? Volksgezondheid Toekomst Verkenning, Nationaal Kompas Volksgezondheid. RIVM. 1, Bilthoven.
[19]	Schuengel, C., Kef, S., Damen, S. and Worm, M. (2010) “People who need people”: Attachment and professional caregiving. Journal of Intellectual Disability Research, 54, 38-47. http://dx.doi.org/10.1111/j.1365-2788.2009.01236.x
[20]	Stoffelen, J.M.T., Buntinx, W.H.E., Wagemans, A.M.A., van Schrojenstein Lantman-de Valk, H.M.J. and Curfs, L.M.G. (2008) Palliatieve zorg voor mensen met een verstandelijke beperking in de praktijk. Een Verkennend Onderzoek. NTZ, 1, 20-33.
[21]	Kehl, K.A. (2006) Moving toward peace: An analysis of the concept of a good death. The American Journal of Hospice & Palliative Care, 23, 277-286. http://dx.doi.org/10.1177/1049909106290380
[22]	Kwak, J., Salmon, J.R., Acquaviva, K.D., Brandt, K. and Egan, K.A. (2010) Benefits of training family caregivers on experiences of closure during end-of-life care. Journal of Pain and Symptom Management, 33, 434-445. http://dx.doi.org/10.1016/j.jpainsymman.2006.11.006
[23]	Graham, R.J. and Robinson, W.M. (2005) Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities. Journal of Developmental And Behavioral Pediatrics, 26, 361-365. http://dx.doi.org/10.1097/00004703-200510000-00004