Résumés
Résumé
La naissance d’un enfant est une situation transitionnelle qui suscite un stress au sein de la famille et implique la mise en oeuvre de stratégies adaptatives qui permettront graduellement à chacun de se resituer face à lui-même et face à l’autre et de faire une place à ce nouvel être. Lorsque l’enfant présente un problème de santé, le stress ressenti par les parents est d’autant plus important. Les recherches montrent que les pères et les mères d’enfant atteint d’un problème de santé vivent différemment cette expérience. Cet article vise à faire le point sur l’état actuel des connaissances de l’expérience des pères et des mères d’enfant atteint d’une problématique de santé et à proposer de nouvelles avenues de recherche permettant une meilleure compréhension de leur expérience.
Abstract
The birth of a child is a transitional event that creates stress within the family and calls for the implementation of adaptative strategies that gradually allow the stakeholders to readjust both with regard to themselves and to their partner and to create room for the presence of the new being. If the child is sickly, the amount of stress suffered by the parents will be proportionately greater. Research has demonstrated that faced with a problem of child sickness, mother and father do not react in the same way. The intention of the present paper is to report on the current level of knowledge concerning the way fathers and mothers experience their child’s health issues and to suggest new directions for research that will allow us to better understand their experience.
Parties annexes
Références
- ALDOUS, J., Mulligan, G.M., & BJARNASON, T. (1998). « Fathering over time: What makes the difference?” Journal of Marriage and the Family, 60, 809-820.
- ARADINE, C.R., & FERKETICH, S. (1990). “The psychological impact of premature birth on mothers and fathers”. Journal of Reproductive & Infant Psychology, 8(2), 75-86.
- BAILEY, D.B.J., BLASCO, P.M. & SIMEONSSON, R.J. (1992).”Needs expressed by mothers and fathers of young children with disabilities”. American Journal on Mental Retardation, 97(1), 1-10.
- BECKMAN, P.J. (1991) “Comparison of mothers’ and fathers’ perceptions of the effects of young children with and without disabilitie”. American Journal of Mental Retardation, 95(5), 585-595.
- BELCHIC, K.J. (1996). “Stress, social support, and sense of parenting competence: A comparison of mothers and fathers of children with autism, Down syndrome, and normal development across the family life cycle”. Dissertation Abstracts International. Section A: Humanities and Social Sciences, 57(2-A), 0574.
- BENN, K.M., & MCCOLL, M.A. (2004). “Parental coping following childhood acquired brain injury”. Brain Injury, 18(3), 239-255.
- BENNETT, T., DELUCA, D., & ALLEN, R. (1996). “Families of children with disabilities: Positive adaptation across the life cycle”. Social Work in Education, 18, 31-44.
- BIRD, C.E. (1999). “Gender Household labor and psychological distress: The impact of the amount and division of housework”. Journal of Health and Social Behavior, 40(1), 32-45.
- BOUCHARD, J-M., PELCHAT, D., BOUDREAULT, P., & GRATTON-LALONDE, M. (1994). Déficiences, incapacités et handicaps: processus d'adaptation et qualité de vie de la famille. Montréal: Éditions Guérin Universitaire.
- BRAZIL, K., & KRUEGER, P. (2002). “Patterns of family adaptation to childhood asthma”. Journal of Pediatric Nursing, 17(3), 167-173.
- BRISTOL, M.M., GALAGHER, J.J., & SCHOPLER, E. (1988). “Mothers and fathers of young developmentally disabled and non-disabled boys: adaptation and spousal support”. Developmental Psychology, 24(3), 441-451.
- BROWN, K.A.E., & BARBARIN, O.A. (1996).”Gender differences in parenting a child with cancer”. Social Work in Health Care, 22(4), 53-71.
- BRUCE, E.J., SCHULTZ, C.L., & SMYRNIOS, K.X. (1996). “A longitudinal study of the grief of mothers and fathers of children with intellectual disability”. British Journal of Medical Psychology, 69, 33-45.
- CLÉMENT, M.V. (1995) « Annonce du polyhandicap et accompagnement familial », in : G. Ponsot (Ed.), Le polyhandicap, CTNERHI, numéro hors série (acte de colloque).
- COHEN, M. H. (1995). “The stages of the prediagnosis period in chronic, life-threatening childhood illness: a process analysis”. Research in Nursing & Health, 18, 39-48.
- COHEN, M. S. (1999). “Families coping with childhood chronic illness: A research review”. Families Systems & Health, 17(2), 149-164.
- CROWE, T.K., VANLEIT, B., & BERGHMANS, K.K. (2000). “Mothers’ perception of child care assistance: The impact of a child’s disability”. The American Journal of Occupational Therapy, 54(1), 651-661.
- CYRULNIK.B. (2001) Les vilains petits canards. Paris : Odile Jacob.
- DARKE, P.R., & GOLDBERG, S. (1994). “Father-infant interaction and parent stress with healthy and medically compromised infants”. Infant Behavior & Development, 17, 3-14.
- DO AMARALL, R.D.C.S. (2003). “How do children with developmental disabilities impact their parental satisfaction, self-esteem, symptoms of stress, ways of coping, marital satisfaction and family support?”. Dissertation Abstracts International. Section A: Humanities and Social Sciences, 64(4-A), 1183.
- DOERING, L., DRACUP, K., & MOSER, D. (1999). “Comparison of psycho-social adjustment of mothers and fathers of high-risk infants in neonatal intensive care unit”. Journal of Perinatology, 19, 132-137.
- DODGSON, J., GARWICK, A., BLOZIS, S., PATTERSON, J., BENNETT, F. & BLUM, R. (2000). “Uncertainty in childhood chronic, conditions and family distress of young children”. Journal of Family Nursing, 6(3), 252-266.
- DOUCET, A. (2001). “You see the need perhaps more clearly than I have”. Journal of Family Issues, 22(3), 328-357.
- DULAC, G. (1993). La paternité: les transformations sociales récentes. Conseil de la famille, Québec: Gouvernement du Québec.
- DULAC, G. (2000). « La fragilité de la paternité dans la société québécoise: les paradoxes du pères nécessaire et du père abject ». Défi jeunesse, 6 (3).
- DULAC, G. (2001). « Les stéréotypes sociaux sur les rôles et l’implication des pères dans les services à la famille ». Défi jeunesse, 26-32.
- DYSON, L.L. (1997). “Fathers and mothers of school-age children with developmental disabilities: parental stress, family functioning, and social support”. American Journal of Mental Retardation, 102(3), 267-279.
- ELLIS, J.T., LUISELLI, J.K., AMIRAULT, D., BYRNE, S., O’MALLEY-CANNON, B., TARAS, M., WOLONGEVICZ, J., & SISSON, R.W. (2002). “Families of children with developmental disabilities: Assessment and comparison of self-reported needs in relation to situational variables”. Journal of Developmental & Physical Disabilities, 14(2), 191-202.
- ESDAILE, S.A., & GREENWOOD, K.M. (2003). “A comparison of mothers’ and fathers’ experience of parenting stress and attribution for parent-child outcome”. Occupational Therapy International, 10 (2), 115-126.
- FINN, C.D. (1999). “The cultural context of parenting an infant with developmental disabilities: Irish mothers’ perspectives”. Dissertation Abstracts International. Section A: Humanities and Social Sciences, 59(7-A), 2443.
- FOLEY, S.J. (1998). “The incidence of depression among fathers of developmentally disabled children”. Dissertation Abstracts International. Section B: The Sciences and Engineering, 58(8-B), 4445.
- FORD-GILBOE, M. (2000). “Dispelling myths and creating opportunity: A comparison of the strengths of single-parent and two parent families”. Advances in Nursing Science, 23(1), 41–58.
- FREY, K.S., FEWELL, R.R., & VADASY, P.F. (1989). “Parental adjustment and changes in child outcome among families of young handicapped children”, Topics in Early Childhood Special Education, 8(4), 38-57.
- GABOR, L.M., & FARNHAM, R.N. (1996). “The impact of children with chronic illness and/or developmental disabilities on low-income, single-parent families”. Infant-Toddler Intervention. The Transdisciplinary Journal, 6(2), 167-180.
- GOLDBECK, L. (2001). “Parental coping with the diagnosis of childhood cancer: gender effects, dissimilarity within couples and quality of life”. Psycho-Oncology, 10(4), 325-335.
- GOLDBERG, S., MORRIS, P., SIMMONS, R. J., FOWLER, R. S., & LEVINSON, H. (1990). “Chronic illness in infancy and parenting stress: A comparison of three groups of parents”. Journal of Pediatric Psychology, 15, 347–358.
- GRAY, D.E. (2003). “Gender and coping: the parents of children with high functioning autism”. Social Science & Medicine, 56, 631-642.
- GROSSMAN, F.K., POLLACK, W.S., & GOLDING, E. (1988). “Fathers and children: Predicting the quality and quantity of fathering”. Developmental Psychology, 24, 82-91.
- GROULX, L.H. (1997). « Contribution de la recherche qualitative à la recherche sociale », in : J. Poupart, J.P. Deslauriers, L.H. Groulx, A. Laperrière, & R. Mayer (Eds.), La recherche qualitative. Enjeux épistémologiques et méthodologiques. Boucherville: Gaëtan Morin, 309-330.
- HARRISON, M.J., & MAGILL-EVANS, J. (1996). “Mother and father interactions over the first year with term and preterm infants”. Research in Nursing & Health, 19(6), 451-459.
- HADADIAN, A. (1994). “Stress and social support in fathers and mothers of young children with and without disabilities”. Early Education & Development, 5(3), 226-235.
- HEAMAN, D.J. (1995). “Perceived stressors and coping strategies of parents who have children with developmental disabilities a comparison of mothers and fathers”. Journal of Pediatric Nursing, 10, 311-320.
- HEATH, D.T., & ORTHNER, D.K. (1999). “Stress and adaptation among male and female single parents”. Journal of Family Issues, 20(4), 557-587.
- HENDRICKS, A.H.C., DE MOOR, J.M.H., OUD, J.H.L., & FRANKEN, W.M. (2000).”Service needs of parents with motor or multiply disabled children in Dutch therapeutic toddler class”. Clinical Rehabilitation, 14(5), 506-517.
- HENINEN, M., & KYNGAS, H. (1998). “Factors associated with the adaptation of parents with a chronically ill child”. Journal of Clinical Nursing, 3, 70-81.
- HORNBY, G. (1995). “Effects on fathers of children with Down syndrome”. Journal of Child & Family Studies, 4(2):239-255.
- HUGHES, M.A., & MCCOLLUM, J. (1994). “Neonatal intensive care: Mothers’ and fathers’ perceptions of what is stressful”. Journal of Early Intervention, 18(3), 258-268.
- JACKSON, K., TERNESTEDT, B.M., & SCHOLLIN, J. (2003). “From alienation to familiarity: experiences of mothers and fathers of preterm infants”. Journal of Advanced Nursing, 43(2), 120-129.
- JAIN, A., BELSKY, J., & CRNIC, K. (1996). “Beyong fathering behaviours: types of dads”. Journal of Family Psychology, 10, 431-442.
- JARVIS, P. (1992). Paradoxes of learning. On becoming an individual in society. San Francisco: Jossey Bass Publisher.
- KATZ, S. (2002). “Gender differences in adapting to a child’s chronic illness: A causal model”. Journal of Pediatric Nursing, 17(4), 257-269.
- KAZAK, A.E., SEGAL-ANDREWS, A.M., & JOHNSON, K. (1995). “Pediatric psychology research and practice: A family/systems approach”, in: M.C. Roberts (Ed.), Handbook of Pediatric Psychology, New York: Guilford, 84-104.
- KELLER, D. & HONIG (2004) “Maternal and paternal stress in families with school-aged children with disabilities”. American Journal of Orthopsychiatry, 74(3), 337-348.
- KING, G.A., KING, S.M. & ROSENBAUM, P.L. (1996). “How mothers and fathers view professional caregiving for children with disabilities”. Developmental medicine & Child Neurology, 38(5): 397-407.
- KRAUSS, M.W. (1993). “Child-related and parenting stress: Similarities and differences between mothers and fathers of children with disabilities”. American Journal of Mental Retardation, 97(4), 393-404.
- LAHNER, J.M., & HAYSLIP, B.H. (2003). “Gender differences in parental reactions to the birth of a premature low birth weight infant”. Journal of Prenatal and Perinatal Psychology and Health, 18(1), 71-88.
- LAZARUS, R.S., & FOLKMAN, S. (1984). Stress, Appraisal and Coping. New York: Springer Publishing Compagny.
- LEMANEK, K.L., JONES, M.L., & LIEBERMAN, B. (2000). “Mothers of children with spina bifida: Adaptational and stress processing”. Children’s Health Care, 29(1), 19-35.
- LENGUA, L.J., & STORMSHAK, E.A. (2000). “Gender, gender roles, and personality: Gender differences in the prediction of coping and psychological symptoms”. Sex Roles, 43(11-12), 787-820.
- LILLIE, T. (1993). “A harder thing than triumph: Roles of fathers of children with disabilities”. Mental Retardation, 31, 438-443.
- LOHR, T., VON GONTARD, A., & ROTH, B. (2000) “Perception of premature birth by fathers and mothers”. Archives of Women’s Mental Health, 3(2), 41-46.
- LUSSIER, N. (1998). Incertitude et stratégies adaptatives de la famille d'un enfant ayant une malformation cardiaque congénitale. Mémoire de maîtrise non-publié, Faculté des sciences infirmières, Université de Montréal
- MCLINDEN, S.E. (1990) “Mothers’ and fathers’ reports of the effects of a young child with special needs on the family”. Journal of Early Intervention, 14, 249-259.
- MILLER, A.C., GORDON, R.M., DANIELE, R.J., & DILLER, L. (1992). “Stress, Appraisal and Coping in Mothers of Disabled and Nondisabled Children”. Journal of Pediatric Psychology, 17(5), 587-605.
- MUNOZ, J.P., KARMOSKY, A., GAUGLER, J., LANG, K., & STAYDUHAR, M. (1999). “Perceived role changes in parents of children with cerebral palsy”. Mental Health, 22(4), 1-3.
- NICHOLLS, A., & KIRKLAND, J. (1996). “Maternal sensitivity: A review of attachment literature definitions”. Early Child Development & Care, 120, 55-65.
- O'BRIEN, M.E. (2001). “Living in a house of cards: family experiences with long-term childhood technology dependence”. Journal of Pediatric Nursing, 16(1), 13-22.
- OLSSON, M.B., & HWANG, C.P. (2001). “Depression and mothers and fathers of children with intellectual disability”. Journal of Intellectual Disability Research, 45(6), 535-543.
- PELCHAT, D. (1989). Programme d’intervention précoce auprès des parents d’un enfant atteint d’une déficience physique (en ligne). Thèse de doctorat non-publiée. Montréal, Université de Montréal. Disponible : www.scinf.umontreal.ca/famille .
- PELCHAT, D. (1994). « L'annonce de la déficience et processus d'adaptation de la famille. Handicap, médecine, éthique ». Les cahiers de l'Afrée, 6, Montpellier, 81-88.
- PELCHAT, D. (1995). « La famille et la naissance d’un enfant ayant une déficience physique », in : F. Duhamel (Ed.), La santé et la famille : approche systémique en soins infirmiers (pp.103-125). Montréal: Gaëtan Morin.
- PELCHAT, D., & BERTHIAUME, M. (1996). « Intervention précoce auprès de parents d’enfant ayant une déficience : un lieu d’apprentissage pour les familles et les intervenants ». Apprentissage et socialisation, 17(1-2), 105-117.
- PELCHAT, D., BISSON, J., RICARD, N., PERREAULT, M., & BOUCHARD, J.M. (1999). “The longitudinal effects of an early family intervention program on the adaptation of families of children with a disability”. International Journal of Nursing Studies, 36(6), 465-477.
- PELCHAT, D., RICARD, N., BOUCHARD, J.M., PERREAULT, M., SAUCIER, J.F., BERTHIAUME, M., & BISSON, J. (1999). “Adaptation of parents in relation to their six-months-old infant’s type of disability”. Child: Care, Health and Development, 25(4), 377-397.
- PELCHAT, D., LEFEBVRE, H., & BOUCHARD, J.M. (2001). « L’annonce d’une déficience motrice cérébrale: Une relation de confiance à construire entre les parents, le personnel paramédical et les médecins ». Paediatrics & Child Health, 6(6), 365-374.
- PELCHAT, D., LEFEBVRE, H., & DAMIANI, C. (2002a). « Deuil - Appropriation de compétences –Transformation ». Pratiques Psychologiques, 1, 41-52.
- PELCHAT, D., LEFEBVRE, H., PROULX, M., & REIDY, M. (2002b). « Satisfaction de parents à la naissance d’un enfant ayant une déficience lors d’une intervention familiale ». Recherche en soins infirmiers, 69, 65-79.
- PELCHAT, D., BISSON, J., BOIS, C., & SAUCIER, J.F. (2003). “The effects of early relational antecedents and other factors on parental sensitivity of mothers and fathers”. Infant and Child Development, 12(1), 27-51.
- PELCHAT, D., LEFEBVRE, H., & PERREAULT, M. (2003). “Differences and similarities between mothers’ and fathers’ experiences of parenting a child with a disability”. Journal of Child Health Care, 7(4), 231-247.
- PELCHAT, D., LEFEBVRE, H., PROULX, M., BOUCHARD, J.M., PERREAULT, M., & BOUCHARD, L. (2004a), « Acquisition de savoirs professionnels et de savoirs parentaux dans le cadre du programme d’intervention PRIFAM ». Revue internationale de l’éducation familiale, 8(2).
- PELCHAT, D., LEFEBVRE, H., PROULX, M., & REIDY, M. (2004b). “Parental satisfaction with an early family intervention program”. The Journal of Perinatal & Neonatal Nursing, 18(2), 128-144.
- PELCHAT, D., & LEFEBVRE, H. (2004). “A holistic intervention program for families with a child with a disability”. Journal of Advanced Nursing, 48(2), 1-8.
- PELCHAT, D., & LEFEBVRE, H. (2005). Apprendre ensemble. Le PRIFAM, programme d’intervention interdisciplinaire et familiale. Montréal : Chenelière/McGraw-Hill.
- PIRÈS, A. (1997). « De quelques enjeux épistémologiques d’une méthodologie générale pour les sciences sociales », in J.Poupart, J.P. Deslauriers, L.H. Groulx, A. Laperrière, & R. Mayer (eds.), La recherche qualitative. Enjeux épistémologiques et méthodologiques. (pp.3-82). Boucherville : Gaëtan Morin.
- POUPART, J. (1997). « L’entretien qualitatif: considérations épistémologiques, théoriques et méthodologiques », in J. Poupart, J.P. Deslauriers, L.H. Groulx, A. Laperrière, & R. Mayer (eds.), La recherche qualitative. Enjeux épistémologiques et méthodologiques. (pp.173-210). Boucherville : Gaëtan Morin.
- RAUTAVA, P., LEHTONEN, L., HELENIUS, H., & SILLANPAA, M. (2003). “Effect of newborn hospitalization on family and child behavior: a 12-year follow-up study”. Pediatrics, 111(2), 277-283.
- RICHARDSON, G.E. (2002) “The Metatheory of Resilience and Resiliency”. Journal of Clinical Psychology, 58(3), 307-321
- ROACH, M.A., ORSMOND, G.I., & BARRATT, M.S. (1999). “Mothers and fathers of children with Down syndrome: parental stress and involvement in childcare”. American Journal of Mental Retardation, 104(5), 422-436.
- SCHUMACKER, K.L. & MELEIS, A.I. (1995). “Transitions: A Central Concept in Nursing”. IMAGE: Journal of Nursing Scolarship, 26(2), 72-80.
- SCORGIE, K., & SOBSEY, D. (2000). “Transformational outcomes associated with parenting children who have disabilities”. Mental Retardation, 38(3), 195-206.
- SKARI, H., SKREDEN, M., MALT, U.F., DALHOLT, M., OSTENSEN, A.B., EGELAND, T., & EMBLEM, R. (2002). “Comparative levels of psychological distress, stress symptoms, depression and anxiety after childbirth. A prospective population-based study of mothers and fathers”. International Journal of Obstetrics & Gynaecology, 109(10), 1154-1163.
- SIMMERMAN, S., BLACHER, J., & BAKER, B.L. (2001). “Fathers’ and mothers’ perceptions of father involvement in families with young children with a disability”. Journal of Intellectual and Developmental Disability, 26(4), 325-338.
- SINGER, L.T., SALVATOR, A., SHENYANG, G., LILIEN, L., & BALEY, J. (1999). “Maternal psychological distress and parenting stress after the birth of a very-low-weight infant”. Journal of the American Medical Association, 281, 799-805.
- SMYTH, R.L. (2002). “Systematic reviews: What are they and how can they be used?”, in: J.V. Craig & R.L. Smyth (Eds.), Evidence-Based Practice for Nurses, London: Churchill-Levingston, 164-183.
- STARKE, M., & MOLLER, A. (2002). “Parents’ need for knowledge concerning the medical diagnosis of their children”. Journal of Child Health Care, 6(4), 245-257.
- STEWART, J.L., & MISHEL, M.H. (2000). „Uncertainty in childhood illness: A synthesis of the parent and child literatures”. Scholarly Inquiry for Nursing Practice, 14(4), 299-319.
- SULLIVAN, A. (2002). « Gender differences in coping strategies of parents of children with Down syndrome”. Down Syndrome: Research and Practice, 8(2), 67-73.
- TAANILA, A., SYRJALA, L., KOKKONEN, J., & JARVELIN, M. (2002). “Coping of parents with physically and/or intellectually disabled children”. Child: Care, Health and Development, 28(1), 73-86.
- TAMRES, L.K, JANICKI, D., & HELGESON, V.S. (2002). “Sex differences in coping behavior: a meta-analytic review and an examination of relative coping”. Personality and Social Psychology Review, 6(1), 2-30.
- TANNEN, D. (1990). You just don’t understand: Women and men in conversation. New York: Morrow.
- THYEN, U., SPERNER, J., MORFELD, M., MEYER, C., & RAVENS-SIEBERER, U. (2003). “Unmet care needs and impact on families with children with disabilities in Germany”. Ambulatory Pediatrics, 3(2), 74-81.
- TIMKO, C., STOVEL, K.V., & MOOS, R.H. (1992). “Functioning among mothers and fathers of juvenile rheumatic disease: a longitudinal study”. Journal of Pediatric Psychology, 17(6), 705-724.
- TOMMISKA, V., OSTBERG, M., & FELLMAN, V. (2002). “Parental stress in families of 2 years old extremely low birthweigth infants”. Archives of Disease in Childhood Fetal & Neonatal Edition, 86(3), F161-F164.
- TRAUSTADOTTIR, R. (1991). “Mothers who care: Gender disability, and family life”. Journal of Family Issues, 12, 211-228.
- TRUTE, B. (1995). “Gender differences in the psychological adjustment of parents of young, developmentally disabled children”. Journal of Child Psychology, Psychiatry & Allied Disciplines, 36(7), 1225-1242.
- VAN DUÜREN, F. (1998). « Situations d'échec : un champ négligé en psychologie sociale expérimentale ? » Revue internationale de psychologie sociale, 1, 45-68.
- WANNAMAKER, C.E., & GLENWICK, D.S. (1998). “Stress, coping, and perceptions of child behavior in parents of preschooler with cerebral palsy”. Rehabilitation Psychology, 43(4), 297-312.
- WEISS, S.J., & GOEBEL, P.W. (2003). “Parents’ touch of their preterm infants and its relationship to their state of mind regarding touch”. Journal of Prenatal and Perinatal Psychology and Health, 17(3), 185-202.
- YEH, C.H. (2002). “Gender differences of parental distress in children with cancer”. Journal of Advanced Nursing, 38(6), 598-606.
- YEH, C.H. (2004). “Gender differences in the use of coping strategies among Taiwanese parents whose children have cancer”. Cancer Nursing, 27(2), 100-107.