Ecological approach to sickle cell disease and environmental quality assessment in Guadeloupe (French West Indies)

References

• American Society of Hematology – ASH. (2016). Clinical practice guidelines on Sickle Cell Disease. https://ashpublications.org/ashclinicalnews/news/5229/ASH-Releases-Clinical-Practice-Guidelines-on
   Google Scholar
• Atkin, K., & Ahmad, W. (2000). Family care-giving and chronic illness: How parents cope with a child with a sickle cell disorder or Thalassaemia. Health & Social Care in the Community, 8(1), 57–15. https://doi.org/10.1046/j.1365-2524.2000.00211.x.
   PubMed Web of Science ®Google Scholar
• Atkin, K., & Ahmad, W. (2001). Living a ‘normal’ life: Young people coping with Thalassaemia major or sickle cell disorder. Social Science & Medicine, 53(56), 615–626. https://doi.org/10.1016/s0277-9536(00)00364-6.
   PubMed Web of Science ®Google Scholar
• Badley, E. (2008). Enhancing the conceptual clarity of the activity and participation components of the international classification of functioning, disability, and health. Social Science & Medicine, 66(11), 2335–2345. https://doi.org/10.1016/j.socscimed.2008.01.026
   PubMed Web of Science ®Google Scholar
• Baszanger, I. (1986). Les maladies chroniques et leur ordre négocié. Revue Française de Sociologie, 27(1), 3–27. DOI : 10.2307/3321642.
   Web of Science ®Google Scholar
• Bernaudin, F., Verlhac, S., Fréard, F., Roudot-Thoraval, F., Benkerrou, M., Thuret, I., Mardini, R., Vannier, J. P., Ploix, E., Romero, M., Cassé-Perrot, C., Helly, M., Gillard, E., Sebag, G., Kchouk, H., Pracros, J. P., Finck, B., Dacher, J. N., Ickowicz, V., & Brugières, P. (2000). Multicenter prospective study of children with Sickle Cell Disease: Radiographic and psychometric correlation. Journal of Child Neurology, 15(5), 333–343. https://doi.org/10.1177/088307380001500510
   PubMed Web of Science ®Google Scholar
• Bibrac, A., & Etienne-Julan, M. (2004). Le centre caribéen de la drépanocytose « Guy Mérault »: Un modèle de prise en charge globale et intégré. In A. Lainé (Ed.), La Drépanocytose. Regards croisés sur une maladie orpheline (pp. 376). Karthala.
   Google Scholar
• Bonner, M. J., Puffer, E. S., & Willard, V. W. (2010). Sickle Cell Disease. In R. J. Shaw & D. R. DeMaso (Eds.), Textbook of pediatric psychosomatic medicine (pp. 259–274). American Psychiatric Publishing, Inc.
   Google Scholar
• Bonnet, D. (2001). Rupture d’alliance contre rupture de filiation. Le cas de la drépanocytose en Côte d’Ivoire. In J. P. Dozon & D. Fassin (Eds.), La Culture selon la santé publique (pp. 332). Balland.
   Google Scholar
• Bonnet, D. (2004). Drépanocytose et ethnicité. In A. Lainé (Ed.), La drépanocytose: Regards croisés sur une maladie orpheline (pp. 45–73). Karthala.
   Google Scholar
• Bonnet, D. (2009). Repenser l’hérédité. Éditions des archives contemporaines.
   Google Scholar
• Bonniol, J.-L., & Benoist, J. (1994). Hérédités plurielles, représentations populaires et conceptions savantes du métissage. Ethnologie française, 24(1), 58–69. http://classiques.uqac.ca/contemporains/bonniol_jean_luc/heredites_plurielles/heredites_plurielles.html.
   Google Scholar
• Boucher, N., Dumont, I., Fougeyrollas, P., Ruel, J., & Moreau, A. (2018). Perspective d’analyse comparée des effets des plans d’action à l’égard des personnes handicapées sur les territoires des villes de Sherbrooke, de Trois-Rivières, Victoriaville et de Cowansville, 2011-2015. Rapport. Bibliothèque et Archives nationales du Québec.
   Google Scholar
• Bougerol, C. (1994). Approche anthropologique de la drépanocytose chez des malades antillais. Sciences sociales et santé, 12(3), 48–68. https://doi.org/10.3406/sosan.1994.1300.
   Web of Science ®Google Scholar
• Bronfenbrenner, U. (1979). The ecology of human development. Experiments by nature and design. Harvard University Press.
   Google Scholar
• Bronfenbrenner, U. (1994). Ecological models of human development. The International Encyclopedia of Education, 3(2), 1643–1647.
   Google Scholar
• Bulgin, D., Tanabe, P., & Jenerette, C. (2018). Stigma of Sickle Cell Disease: A systematic review. Issues in Mental Health Nursing, 39(8), 675–686. https://doi.org/10.1080/01612840.2018.1443530
   PubMed Web of Science ®Google Scholar
• Bury, M. (1982). Chronic illness as a biographical disruption. Sociology of Health & Illness, 4(2), 167–182 DOI: 10.1111/1467-9566.ep11339939.
   PubMedGoogle Scholar
• Bury, M. (1991). The sociology of chronic illness: A review of research and prospects. Sociology of Health & Illness, 13(4), 451–468 https://doi.org/10.1111/j.1467-9566.1991.tb00522.x.
   Web of Science ®Google Scholar
• Cholley-Gomez* M, Ruffié* S, Villoing G, Boucher N and Fougeyrollas P. (2021). Évaluer la participation sociale de jeunes drépanocytaires. Recherche transdisciplinaire et adaptation des outils de recueil de données MHAVIE et MQE au contexte socioculturel de la Guadeloupe1. aequitas, 26(2), 43–64. 10.7202/1075205ar
   Google Scholar
• Ciribassi, R. M., & Patil, C. L. (2016). “We don’t wear it on our sleeve”: Sickle cell disease and the (in)visible body in parts. Social Science & Medicine, 148, 131–138. https://doi.org/10.1016/j.socscimed.2015.11.033
   PubMed Web of Science ®Google Scholar
• Corbin, J., & Strauss, A. (1987). Accompaniments of chronic illness: Changes in body, self, biography and biographical time. Research in the Sociology of Health Care, 6, 249–281. https://doi.org/10.1177/1049732302239603.
   Google Scholar
• Dampier, C., Lieff, S., LeBeau, P., Rhee, S., McMurray, M., Rogers, Z., Smith-Whitley, K., & Wang, W., Comprehensive Sickle Cell Centers (CSCC) Clinical Trial Consortium (CTC). (2010). Health-related quality of life in children with Sickle Cell Disease: A report from the comprehensive Sickle Cell Centers clinical trial consortium. Pediatric Blood & Cancer, 55(3), 485–494. https://doi.org/10.1002/pbc.22497
   PubMed Web of Science ®Google Scholar
• Dyson, S., & Atkin, K. M. (2012). Sickle cell and Thalassaemia: Global public health issues come of age. In S. Dyson & K. Atkin (Eds.), Genetics and global public health (pp. 1–13). Routledge.
   Google Scholar
• Edwards, G., Noreau, L., Boucher, N., Fougeyrollas, P., Grenier, Y., McFadyen, B. J., Morales, E., & Vincent, C. (2014). Disability, rehabilitation research and post-cartesian embodied ontologies has the research paradigm changed? Environmental Contexts and Disability, 8, 73–102. https://doi.org/10.1108/S1479-354720140000008005
   Google Scholar
• Ferez, S., Silvestri, L., & Issanchou, D. (2021). Les obstacles à la participation professionnelle rencontrés par les jeunes atteints de mucoviscidose: Le poids de l’environnement humain. Revue française des affaires sociales, 4, 137–157. https://doi.org/10.3917/rfas.214.0137
   Google Scholar
• Ferez, S., Wallach, I., Gaucher, C., Heas, S., Ruffié, S., Thomas, J., Gaissad, L., Perez, M., Duval, E., Cervera, M. et al. (2015). Effets du diagnostic d’infection au VIH sur la participation sociale: Enjeux de l’application du processus de production du Handicap à une maladie chronique. Développement humain, handicap et changement social, 21(2), 75–88. https://doi.org/10.7202/1086470ar
   Google Scholar
• Fougeyrollas, P. (2010). Le Funambule, le fil et la toile. Transformations réciproques du sens du handicap. Québec, Presses Universitaires de Laval.
   Google Scholar
• Fougeyrollas, P., Bergeron, H., Cloutier, R., Côté, J., & St-Michel, G. (1998). Classification québécoise: Processus de production du handicap. Québec, Réseau international sur le processus de production du handicap, RIPPH/SCCIDIH, 166p.
   Google Scholar
• Fougeyrollas, P., Boucher, N., Edwards, G., Grenier, Y., & Noreau, L. (2019). The disability creation process model: A comprehensive explanation of disabling situations as a guide to developing policy and service programs. Scandinavian Journal of Disability Research, 21(1), 25–37. https://doi.org/10.16993/sjdr.62
   Web of Science ®Google Scholar
• Fougeyrollas, P., & Charrier, F. (2013). Modèle du Processus de production du handicap. EMC –Kinésithérapie-Médecine physique-Réadaptation, 9(3), 1–8 doi:10.1016/S1283-0887(13)56628-X.
   Google Scholar
• Fougeyrollas, P., & Grenier, Y. (2018). Monitoring disability policies and legislation towards effective exercise of rights to equality and inclusive access for persons with disabilities: The case of the Quebec model. Societies, 8(2), 41. https://doi.org/10.3390/soc8020041.
   Web of Science ®Google Scholar
• Fougeyrollas, P., Noreau, L., St-Michel, G., & Boschen, K. (1999). Mesure de la Qualité de l’Environnement. Lac St-Charles (Québec): CQCIDIH.
   Google Scholar
• Fougeyrollas, P., Noreau, L., St-Michel, G., & Boschen, K. (2008 https://ripph.qc.ca/wp-content/uploads/2017/09/MQE_Guide-long_francais_reproduction-interdite.pdf). Mesure de la Qualité de l’Environnement, MQE 2.0. RIPPH - C.P. 225. Lac St-Charles (Québec).
   Google Scholar
• Goffman, E. (1963). Stigmates, les usages sociaux des handicaps. Éditions de Minuit.
   Google Scholar
• Graves, J. K., Hodge, C., & Jacob, E. (2016). Depression, anxiety, and quality of life in children and adolescents with Sickle Cell Disease. Journal of Pediatric Nursing, 42(3), 113–144. https://doi.org/10.1182/bloodadvances.2017006940
   Google Scholar
• Haute Autorité de Santé, H.A.S (2010). Syndromes drépanocytaires majeurs de l’enfant et de l’adolescent -protocole national de diagnostic et de soins pour une maladie rare – Actualisé en 2014. https://www.has-sante.fr/jcms/c_938890/fr/ald-n-10-syndromes-drepanocytaires-majeurs-de-l-enfant-et-de-l-adolescent
   Google Scholar
• Héjoaka, F. (2012). L’enfant gardien du secret. Vivre et grandir avec le sida et ses traitements à Bobo Dioulasso (Burkina Faso). [Thèse]. Ecole des Hautes Etudes en Sciences Sociales.
   Google Scholar
• Houwing, M. E., Muntendam, M. J., van Muilekom, M. M., Teela, L., Fijnvandraat, K., de Pagter, A., Heijboer, H., van Oers, H. A., Cnossen, M. H., & Haverman, L. (2022). Health-related quality of life in infants, toddlers and young children with Sickle Cell Disease. Pediatric Blood & Cancer, 69(1), e29358. https://doi.org/10.1002/pbc.29358
   PubMed Web of Science ®Google Scholar
• Jerrell, J. M., Tripathi, A., & McIntyre, R. S. (2011). Prevalence and treatment of depression in children and adolescents with sickle cell disease: a retrospective cohort study. The Primary Care Companion for CNS Disorders, 13(2). PCC.10m01063. https://doi.org/10.4088/PCC.10m01063
   PubMedGoogle Scholar
• Lacroix, N., Boucher, N., & Villeneuve, P. (2016). Participation sociale et sclérose en plaques: Réalité particulière. Service Social, 62(2), 94–113. https://doi.org/10.7202/1038579ar.
   Google Scholar
• Lainé, A. (2009 https://hal.archives-ouvertes.fr/hal-00436022). Constructions d’un stigmate sanitaire: La drépanocytose, entre situations locales et globales. Université Jean-Moulin-Lyon 3.
   Google Scholar
• Lainé, A., & Tchernia, G. (2010, 3). « L’émergence » d’une maladie multimillénaire. Circulations de savoir et production d’inégalités face à la drépanocytose. In V. Chasles (Ed.), Santé et mondialisation (pp. 239–261). Université Jean-Moulin-Lyon.
   Google Scholar
• Lespinet-Najib, V., & Belio, C. (2013). Classification des handicaps: Enjeux et controverses. Hermès, La Revue, 66(2), 104–110. https://doi.org/10.4267/2042/51561
   Google Scholar
• Mitchell, M. J., Lemanek, K., Palermo, T. M., Crosby, L. E., Nichols, A., & Powers, S. W. (2007). Parent perspectives on pain management, coping, and family functioning in pediatric Sickle Cell Disease. Diagnostique, 46(4), 115–124. https://doi.org/10.1177/153450849902401-411
   Google Scholar
• Moody, K. L., Mercer, K., & Glass, M. (2019). An integrative review of the prevalence of depression among pediatric patients with Sickle Cell Disease. Social Work in Public Health, 34(4), 343–352. https://doi.org/10.1080/19371918.2019.1606754
   PubMed Web of Science ®Google Scholar
• Noreau, L., Boucher, N., Edwards, G., Fougeyrollas, P., Routhier, F., & Vincent, C. (2015). Enhancing independent community access and participation: Services, technologies and policies. Oxford Textbook of Neurorehabilitation, 33, 399–418. https://doi.org/10.1093/med/9780199673711.003.0033
   Google Scholar
• Osunkwo, I., Andemariam, B., Minniti, C. P., Inusa, B. P. D., El Rassi, F., Francis‐Gibson, B., Nero, A., Trimnell, C., Abboud, M. R., Arlet, J.-B., Colombatti, R., Montalembert, M., Jain, S., Jastaniah, W., Nur, E., Pita, M., DeBonnett, L., Ramscar, N., Bailey, T., and James, J. (2021). Impact of sickle cell disease on patientsʼ daily lives, symptoms reported, and disease management strategies: Results from the international Sickle Cell world assessment survey (SWAY). American Journal of Hematology, 96(4), 404–417 https://doi.org/10.1002/ajh.26063.
   PubMed Web of Science ®Google Scholar
• Pagney, J. (1991). Le climat des Antilles. Masson.
   Google Scholar
• Panepinto, J. A., Brousseau, D. C., Hillery, C. A., & Scott, J. P. (2005). Variation in hospitalizations and hospital length of stay in children with vaso-occlusive crises in sickle cell disease. Pediatric Blood & Cancer, 44(2), 182–186. https://doi.org/10.1002/pbc.20180
   PubMed Web of Science ®Google Scholar
• Pierret, J. (1997). Un objet pour la sociologie de la maladie chronique: La situation de séropositivité au VIH ? Sciences Sociales et Santé, 15(4), 97–120 https://doi.org/10.3406/sosan.1997.1413.
   Web of Science ®Google Scholar
• Poku, B. A., Caress, A. L., & Kirk, S. (2018). Adolescents’ experiences of living with sickle cell disease: An integrative narrative review of the literature. International Journal of Nursing Studies, 80, 20–28. https://doi.org/10.1016/j.ijnurstu.2017.12.008
   PubMed Web of Science ®Google Scholar
• Pondarré, C., Lemmet, C., Ducros-Mirallès, E., Chomentowski, M., Rebmeister, B., & Ruffieux, N. (2020 https://bit.ly/chicreteil-drepanocytose.). DREPASCOL: Synthèse scientifique de la recherche.
   Google Scholar
• Pruneau, J., Ferez, S., Maillard, F., Philippon, B., & Hue, O. (2009). « Accès à la culture biomédicale et enjeux socio-symboliques des représentations de la drépanocytose dans une population scolaire de Guadeloupe ». Etudes caribéennes, 12 https://doi.org/10.4000/etudescaribeennes.3684. [En ligne], mis en ligne le 9 septembrehttp://etudescaribeennes.revues.org/document3684.html
   Google Scholar
• Pruneau, J., Philippon, B., Maillard, F., & Hue, O. (2008). Sport et drépanocytose: Le paradoxe dans l’itinéraire thérapeutique des adolescents drépanocytaires « SS » en Guadeloupe ». Sciences sociales et santé, 26(2), 5–32. https://doi.org/10.3917/sss.262.0005.
   Google Scholar
• Prussien, K. V., Siciliano, R. E., Ciriegio, A. E., Anderson, A. S., Sathanayagam, R., DeBaun, M. R., Jordan, L. C., & Compas, B. E. (2020). Correlates of cognitive function in Sickle Cell Disease: A meta-analysis. Journal of Pediatric Psychology, 45(2), 145–155. https://doi.org/10.1093/jpepsy/jsz100
   PubMed Web of Science ®Google Scholar
• Puffer, E. S., Schatz, J. C., & Roberts, C. W. (2010). Relationships between somatic growth and cognitive functioning in young children with Sickle Cell Disease. Journal of Pediatric Psychology, 35(8), 892–904. https://doi.org/10.1093/jpepsy/jsp124
   PubMed Web of Science ®Google Scholar
• Reader, S. K., Pantaleao, A., Keeler, C. N., Ruppe, N. M., Kazak, A. E., Rash-Ellis, D. L., Wadman, J., Miller, R. E., & Deatrick, J. A. (2020). Family resilience from the perspective of caregivers of youth With Sickle Cell Disease. Journal of Pediatric hematology/oncology, 42(2), 100–106. https://doi.org/10.1097/MPH.0000000000001682
   PubMed Web of Science ®Google Scholar
• Ruffié S, Cholley Gomez M, Villoing G, Ferez S, Boucher N and Fougeyrollas P. (2021). Penser les effets du désavantage social liés à la maladie chronique : enjeux épistémologiques d’un projet transdisciplinaire sur des jeunes drépanocytaires en Guadeloupe. Alter, 15(2), 177–189. 10.1016/j.alter.2020.07.003
   Web of Science ®Google Scholar
• Saint-Martin, C., Romana, M., Bibrac, A., Brudey, K., Tarer, V., Divialle-Doumdo, L., Petras, M., Keclard-Christophe, L., Lamothe, S., Broquere, C., & Etienne-Julan, M. (2013). Universal newborn screening for haemoglobinopathies in Guadeloupe (French West Indies): A 27-year experience. Journal of Medicine Screen, 20(4), 177–182. https://doi.org/10.1177/0969141313507919
   PubMed Web of Science ®Google Scholar
• Schatz, J., Finke, R. L., Julie, M. K., Kellett, M. J., & Kramer, H. K. (2002). Cognitive functioning in children with Sickle Cell Disease: A meta-analysis. Journal of Pediatric Psychology, 27(8), 739–748. https://doi.org/10.1093/jpepsy/27.8.739
   PubMed Web of Science ®Google Scholar
• Strauss, A., & Glaser, B. (1975). Chronic illness and quality of life. Mosby.
   Google Scholar
• Tanabe, P., Spratling, R., Smith, D., Grissom, P., & Hulihan, M. (2019). Understanding the complications of Sickle Cell Disease. American Journal of Nursing, 119(6), 26–35. https://doi.org/10.1097/01.NAJ.0000559779.40570.2c
   PubMed Web of Science ®Google Scholar
• Tarazi, R. A., Grant, M. L., Ely, E., & Barakat, L. P. (2007). Neuropsychological functioning in preschool-age children with sickle cell disease: The role of illness-related and psychosocial factors. Child Neuropsychology: a Journal on Normal and Abnormal Development in Childhood and Adolescence, 13(2), 155–172. https://doi.org/10.1080/09297040600611312
   PubMed Web of Science ®Google Scholar
• Taylor, L. E., Stotts, N. A., Humphreys, J., Treadwell, M. J., & Miaskowski, C. (2010). A review of the literature on the multiple dimensions of chronic pain in adults with sickle cell disease. Journal of Pain and Symptom Management, 40(3), 416–435. https://doi.org/10.1016/j.jpainsymman.2009.12.027
   PubMed Web of Science ®Google Scholar
• Wastnedge, E., Waters, D., Patel, S., Morrison, K., Goh, M. Y., Adeloye, D., & Rudan, I. (2018). The global burden of sickle cell disease in children under five years of age: A systematic review and meta-analysis. Journal of Global Health, 8(2), 021103. https://doi.org/10.7189/jogh.08.021103
   PubMed Web of Science ®Google Scholar
• Whiteneck, G., & Djikers, M. P. (2009). Difficult to measure constructs: Conceptual and methodological issues concerning participation and environmental factors. Archives of Physical Medicine and Rehabilitation, 90(11), S22–S35. https://doi.org/10.1016/j.apmr.2009.06.009
   PubMed Web of Science ®Google Scholar
• Wilkie, D. J., Molokie, R., Boyd-Seal, D., Suarez, M. L., Young, K., Zong, S., Wittert, H., Zhao, Z., Saunthararajah, Y., & Wang, Z. J. (2010). Patient-reported outcomes: Descriptors of nociceptive and neuropathic pain and barriers to effective pain management in adult outpatients with Sickle Cell Disease. Journal of the National Medical Association, 102(1), 18–27. https://doi.org/10.1016/S0027-9684(15)30471-5
   PubMed Web of Science ®Google Scholar