Résumés
Résumé
Être parent d’une personne ayant une déficience intellectuelle (DI) implique une responsabilité s’étendant sur plusieurs décennies; responsabilité qui se transfère parfois vers la fratrie en raison du vieillissement des parents. Peu d’études s’intéressent au point de vue des proches (parents, fratrie, autres membres de la famille) concernant la période couvrant la fin de vie de la personne présentant une DI. Afin de favoriser une meilleure compréhension de cette situation et de soutenir le développement des pratiques, cette étude de la portée visait la description des expériences et des besoins des proches d’une personne ayant une DI lors de sa fin de vie. Cinq bases de données pertinentes ont été interrogées (CINHAL, Medline, PyscInfo, Social Services Abstracts et Sociological Abstracts). Puis, 21 articles, publiés entre 1997 et 2021, correspondant aux critères d’inclusion, ont été sélectionnés. Le logiciel d’analyse de recherche qualitative NVivo a été utilisé pour effectuer une analyse thématique de ces études. L’accompagnement de la personne présentant une DI en fin de vie ainsi que le deuil subséquent étaient les deux thématiques principalement abordées par les proches consultés. Cette étude a mené au constat que ces derniers perçoivent leurs expériences de proche aidance et de deuil comme différentes de celles vécues par des proches d’une personne sans DI, suscitant ainsi des besoins particuliers de support formel et informel. Il apparaît ainsi crucial de développer des connaissances sur ces besoins afin d’optimiser les pratiques de soutien auprès des proches d’une personne ayant une DI en fin de vie ou décédée.
Mots-clés :
- deuil,
- fin de vie,
- déficience intellectuelle,
- proche aidant,
- étude de la portée
Abstract
Parenting a child with intellectual disability (ID) involves a responsibility spanning decades; responsibility which is sometimes transferred to siblings due to the aging of parents. Few studies are interested in this particular parental trajectory, especially with regard to the point of view of relatives (parents, siblings, other family members) concerning the period covering the end of life of the person with an ID and the bereavement that follows. In order to develop a better understanding of this situation and to support the development of practices, this scoping review aimed to describe the experiences and needs of family caregivers of a person with ID receiving end-of-life care. Five databases were searched (CINHAL, Medline, PyscInfo, Social Services Abstracts and Sociological Abstracts). 21 studies corresponding to the inclusion criteria were selected. Qualitative research analysis software NVivo was used to conduct a thematic analysis of the 21 studies included. The support offered during the end-of-life as well as the bereavement that follows were the two themes mainly addressed by the participants. This study led to the observation that relatives perceived their experiences of close support and bereavement as different from those experienced by relatives of a person without ID, thus creating specific needs for formal and informal support. It therefore appears crucial to develop knowledge of these needs in order to optimize support practices for the relatives of a person with ID at the end of life.
Keywords:
- bereavement,
- end-of-life,
- intellectual disability,
- family caregiver,
- scoping review
Parties annexes
Références
- Adam, E., Sleeman, K. E., Brearley, S., Hunt, K. et Tuffrey-Wijne, I. (2020). The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review. Palliative Medicine, 34(8), 1006-1018. https://doi.org/10.1177/0269216320932774
- Arksey, H. et O’Malley, L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19-32. https://doi.org/10.1080/1364557032000119616
- Baumbusch, J. (2017). Aging together: Caring relations in families of adults with intellectual disabilities. Gerontologist, 57(2), 341-347. https://doi.org/10.1093/geront/gnv103
- Bekkema, N., de Veer, A. J., Hertogh, C. M. et Francke, A. L. (2014). Respecting autonomy in the end-of-life care of people with intellectual disabilities: A qualitative multiple-case study. Journal of Intellectual Disability Research, 58(4), 368-380. https://doi.org/10.1111/jir.12023
- Bekkema, N., de Veer, A. J., Hertogh, C. M. et Francke, A. L. (2015). 'From activating towards caring': Shifts in care approaches at the end of life of people with intellectual disabilities; A qualitative study of the perspectives of relatives, care-staff and physicians. BMC Palliative Care, 14(33). https://doi.org/10.1186/s12904-015-0030-2
- Blacher, J. (2001). Transition to adulthood: Mental retardation, families, and culture. American Journal of Mental Retardation, 106(2), 173-188. https://doi.org/10.1352/0895-8017(2001)106<0173:TTAMRF>2.0.CO;2
- Boer, D., Hofstede, J., Veer, A., Raijmakers, N. et Francke, A. (2017). Relatives' perceived quality of palliative care: Comparisons between care settings in which patients die. BMC Palliative Care, 16(1), 1-8. https://doi.org/10.1186/s12904-017-0224-x
- Burke, M. M., Fish, T. et Lawton, K. (2015). A comparative analysis of adult siblings' perceptions toward caregiving. Intellect and Developmental Disabilities, 53(2), 143-157. https://doi.org/10.1352/1934-9556-53.2.143
- Chowdhury, M. K., Shopna, K., Lynch-Godrei, A., Jain, M., Farheen, N., Begum, N., Ahmad, N. et Doherty, M. (2021). Providing home-based support for children with chronic conditions in an urban slum: Experiences from a community-based palliative care program in Bangladesh. Global Pediatric Health, 8, 1-10. https://doi.org/10.1177/2333794x21999155
- Colquhoun, H. L., Levac, D., O’Brien, K. K., Straus, S., Tricco, A. C., Perrier, L., Kastner, M. et Moher, D. (2014). Scoping reviews: Time for clarity in definition, methods, and reporting. Journal of Clinical Epidemiology, 67(12), 1291-1294. https://doi.org/10.1016/j.jclinepi.2014.03.013
- Coppus, A. M. W. (2013). People with intellectual disability: What do we know about adulthood and life expectancy? Developmental Disabilities Research Reviews, 18(1), 6–16. https://doi.org/10.1002/ddrr.1123
- Couvrette, R., Milot, É. et Fortin, G. (2024). Factors influencing palliative and end-of-life care for adults with intellectual disabilities: A scoping review of health and care workers' experiences. Journal of social work in end-of-life & palliative care, 1–19. https://doi.org/10.1080/15524256.2024.2346113
- De Schreye, R., Houttekier, D., Deliens, L. et Cohen, J. (2017). Developing indicators of appropriate and inappropriate end-of-life care in people with Alzheimer’s disease, cancer or chronic obstructive pulmonary disease for population-level administrative databases: A RAND/UCLA appropriateness study. Palliative Medicine, 31(10), 932-945. https://doi.org/10.1177/0269216317705099
- Doka, K. J. (1989). Disenfranchised Grief: Recognizing Hidden Sorrow. Lexigton Press.
- Doka, K. J. (2002). Disenfranchised Grief: New Directions, Challenges, and Strategies for Practice. Research Press Publishers.
- Dolan, E., Lane, J., Hillis, G. et Delanty, N. (2019). Changing trends in life expectancy in intellectual disability over time. Irish Medical Journal, 112(9), 1006-1010. https://pubmed.ncbi.nlm.nih.gov/31651135/
- Dunwoodie Stirton, F. et Heslop, P. (2018). Medical certificates of cause of death for people with intellectual disabilities: A systematic literature review. Journal of Applied Research in Intellectual Disabilities, 31(5), 659-668. https://doi.org/10.1111/jar.12448
- Gerstein, E. D., Crnic, K. A., Blacher, J. et Baker, B. L. (2009). Resilience and the course of daily parenting stress in families of young children with intellectual disabilities. Journal of Intellectual Disability Research, 53(12), 981-997. https://doi.org/10.1111/j.1365-2788.2009.01220.x
- Grossberg, R. I., Blackford, M., Friebert, S., Benore, E. et Reed, M. D. (2013). Direct care staff and parents'/legal guardians' perspectives on end-of-life care in a long-term care facility for medically fragile and intellectually disabled pediatric and young adult residents. Palliative & Supportive Care, 11(4), 307-314. https://doi.org/10.1017/S1478951512000326
- Guon, J., Wilfond, B. S., Farlow, B., Brazg, T. et Janvier, A. (2014). Our children are not a diagnosis: The experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18. American Journal of Medical Genetics - Part A, 164(2), 308-318. https://doi.org/10.1002/ajmg.a.36298
- Haley, W. et Perkins, E. (2004). Current status and future directions in family caregiving and aging people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 1(1), 24-30. https://doi.org/10.1111/j.1741-1130.2004.04004.x
- Janvier, A., Farlow, B. et Barrington, K. J. (2016). Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18. American Journal of Medical Genetics - Part C, 172(3), 279-287. https://doi.org/10.1002/ajmg.c.31526
- Janvier, A., Farlow, B. et Wilfond, B. S. (2012). The experience of families with children with Trisomy 13 and 18 in social networks. Pediatrics, 130(2), 293-298. https://doi.org/10.1542/peds.2012-0151
- Janvier, A., Farlow, B., Barrington, K. J., Bourque, C. J., Brazg, T. et Wilfond, B. (2020). Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study. Palliative Medicine, 34(3), 262-271. https://doi.org/10.1177/0269216319860662
- Lee, C.e. et Burke, M. M. (2018). Caregiving roles of siblings of adults with intellectual and developmental disabilities: A systematic review. Journal of Policy and Practice in Intellectual Disabilities, 15(3), 237-246. https://doi.org/10.1111/jppi.12246
- Levac, D., Colquhoun, H. et O'Brien, K. K. (2010). Scoping studies: Advancing the methodology. Implementation Science, 5(69), 1-9. https://doi.org/10.1186/1748-5908-5-69
- Lord, A.J., Field, S. et Smith, I.C., 2017. The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis. Journal of Applied Research in Intellectual Disabilities, 30, 1007–1021. https://doi.org/10.1111/jar.12376
- Marlow, S. et Martin, M. (2008). 'A voyage of grief and beauty': Supporting a dying family member with an intellectual disability. International Journal of Palliative Nursing, 14(7), 342-349. https://doi.org/10.12968/ijpn.2008.14.7.30620
- McHugh M. L. (2012). Interrater reliability: The kappa statistic. Biochemia medica, 22(3), 276–282. https://www.ncbi.nlm.nih.gov/pubmed/23092060
- McKibben, L., Brazil, K., McLaughlin, D. et Hudson, P. (2021). Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study. Palliative & Supportive Care, 19(4), 405-414. https://doi.org/10.1017/S1478951520001157
- McLaughlin, D., Barr, O., McIlfatrick, S. et McConkey, R. (2015). Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities. BMJ Supportive Palliative Care, 5(5), 531-537. https://doi.org/10.1136/bmjspcare-2013-000615
- Milo, E. M. (1997). Maternal responses to the life and death of a child with a developmental disability: A story of hope. Death Studies, 21(5), 443-476. https://dx.doi.org/10.1080/074811897201822
- Paignon, A., Laverrière, S., Lalive d’Épinay Raemy, S. et Cinter, F. (2020). Parents d’adultes avec une déficience intellectuelle : un engagement pour la vie. Gérontologie et société, 42(161), 87-99. https://doi.org/10.3917/gs1.161.0087
- Power, A. (2008). Caring for independent lives: Geographies of caring for young adults with intellectual disabilities. Social Science & Medicine, 67(5), 834-843. https://doi.org/10.1016/j.socscimed.2008.05.023
- Reilly, D. E., Huws, J. C., Hastings, R. P. et Vaughan, F. L. (2008). 'When your child dies you don't belong in that world any more'-Experiences of mothers whose child with an intellectual disability has died. Journal of Applied Research in Intellectual Disabilities, 21(6), 546-560. https://dx.doi.org/10.1111/j.1468-3148.2008.00427.x
- Reilly, D., Huws, J., Hastings, R. et Vaughan, F. (2010). Life and death of a child with down syndrome and a congenital heart condition: Experiences of six couples. Intellectual & Developmental Disabilities, 48(6), 403-416. https://doi.org/10.1352/1934-9556-48.6.403
- Reiss, S., Levitan, G. W. et Szyszko, J. (1982). Emotional disturbance and mental retardation: Diagnostic overshadowing. American Journal of Mental Deficiency, 86(6), 567-74. https://pubmed.ncbi.nlm.nih.gov/7102729/
- Richard, M.-C. et Maltais, D. (2007). Le vieillissement des personnes présentant une déficience intellectuelle : Bref rapport (Rapport no 07-08). Université du Québec à Montréal. https://www.rsslf.ca/fr/ressources/documents-et-publications/item/le-vieillissement-des-personnes-presentant-une-deficience-intellectuelle-un-bref-rapport
- Riper, M. (2003). A Change of Plans: The birth of a child with Down syndrome doesn't have to be a negative experience. AJN The American Journal of Nursing, 103, 71-74. https://www.researchgate.net/publication/232160126_A_Change_of_Plans_The_birth_of_a_child_with_Down_syndrome_doesn’t_have_to_be_a_negative_experience
- lock, R. L., Luckasson, R. et Tassé, M. J. (2021). Intellectual disability: Definition, diagnosis, classification, and systems of supports, 12th edition. American Association on Intellectual and Developmental Disabilities (AAIDD).
- Stroebe, M. et Schut, H. (2010). The dual process model of coping with bereavement: A decade on. OMEGA-Journal of Death and Dying, 61(4), 273-289. https://doi.org/10.2190/OM.61.4.b
- Taggart, L., Truesdale-Kennedy, M., Ryan, A. et McConkey, R. (2012). Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. Journal of Intellectual Disabilities, 16(3), 217-234. https://doi.org/10.1177/1744629512456465
- Todd, S. (2007). Silenced grief: Living with the death of a child with intellectual disabilities. Journal of Intellectual Disability Research, 51(8), 637-648. https://doi.org/10.1111/j.1365-2788.2007.00949.x
- Todd, S. et Shearn, J. (1996). Struggles with time: The careers of parents with adult sons and daughters with learning disabilities. Disability & Society, 11(3), 379-402. https://doi.org/10.1080/09687599627679
- Tricco, A. C., Lillie, E., Zarin, W., O’Brien, K. K., Colquhoun, H., Levac, D., Moher, D., Peters, M. D. J., Horsley, T., Weeks, L., Hempel, S., Akl, E. A., Chang, C., McGowan, J., Stewart, L., Hartling, L., Aldcroft, A., Wilson, M. G., Garritty, C., Lewin, S., Godfrey, C. M., Macdonald, M. T., Langlois, E. V., Soares-Weiser, K., Moriarty, J., Clifford, T., Tunçalp, Ö. et Straus, S. E. (2018). PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Annals of Internal Medicine, 169(7), 467-473. https://doi.org/10.7326/m18-0850
- Truesdale, M., Melville, C., Barlow, F., Dunn, K., Henderson, A., Hughes-Mccormack, L. A., McGarty, A., Rydzewska, E., Smith, G. S., Symonds, J., Jani, B. et Kinnear, D. (2021). Respiratory-associated deaths in people with intellectual disabilities: A systematic review and meta-analysis. BMJ Open, 11(7), 1-20. https://doi.org/10.1136/bmjopen-2020-043658
- Voss, H., Vogel, A., Wagemans, A. M. A., Francke, A. L., Metsemakers, J. F. M., Courtens, A. M. et de Veer, A. J. E. (2019). Advance care planning in the palliative phase of people with intellectual disabilities: Analysis of medical files and interviews. Journal of Intellectual Disability Research, 63(10), 1262-1272. https://doi.org/10.1111/jir.12664
- Voss, H., Vogel, A., Wagemans, A. M. A., Francke, A. L., Metsemakers, J. F. M., Courtens, A. M. et de Veer, A. J. E. (2020). What is important for advance care planning in the palliative phase of people with intellectual disabilities? A multi-perspective interview study. Journal of Applied Research in Intellectual Disabilities, 33(2), 160-171. https://doi.org/10.1111/jar.12653
- Voss, H., Vogel, A., Wagemans, A. M. A., Francke, A. L., Metsemakers, J. F. M., Courtens, A. M. et De Veer, A. J. E. (2017). Advance care planning in palliative care for people with intellectual disabilities: A systematic review. Journal of Pain and Symptom Management, 54(6), 938-960. https://doi.org/10.1016/j.jpainsymman.2017.04.016
- Walker, R. et Hutchinson, C. (2019). Care-giving dynamics and futures planning among ageing parents of adult offspring with intellectual disability. Ageing and Society, 39(7), 1512-1527. https://doi.org/10.1017/s0144686x18000144
- World Health Organization. (2001). Healthy ageing – Adults with intellectual disabilities: Summative report. Journal of Applied Research in Intellectual Disabilities, 14(3), 256-275. https://doi.org/10.1046/j.1468-3148.2001.00071.x
- Young, H., Garrard, B., Lambe, L. et Hogg, J. (2014). Helping people cope with bereavement. Learning Disability Practice, 17(6), 16-20. https://doi.org/10.7748/ldp.17.6.16.e1540
- Zaal-Schuller, I. H., Willems, D. L., Ewals, F., van Goudoever, J. B. et de Vos, M. A. (2016). How parents and physicians experience end-of-life decision-making for children with profound intellectual and multiple disabilities. Research in Developmental Disabilities, 59, 283-293. https://doi.org/10.1016/j.ridd.2016.09.012
- Zaal-Schuller, I. H., Willems, D. L., Ewals, F., van Goudoever, J. B. et de Vos, M. A. (2018). Considering quality of life in end-of-life decisions for severely disabled children. Research in Developmental Disabilities, 73, 67-75. https://doi.org/10.1016/j.ridd.2017.12.015