Multiple birth families with children with special needs: A qualitative investigation of mothers' experiences

Twin Research and Human Genetics

Volumn 15, Issue 4, 2012, Pages 503-515

  Bolch, Christie E ^a,b   Davis, Peter G ^c,d   Umstad, Mark P ^c   Fisher, Jane R W ^b,e  

^a ROYAL CHILDREN'S HOSPITAL   (Australia)

^b UNIVERSITY OF MELBOURNE   (Australia)

^c ROYAL WOMEN'S HOSPITAL   (Australia)

^d UNIVERSITY OF MELBOURNE   (Australia)

^e MONASH UNIVERSITY   (Australia)

Author keywords

disability; mothering; multiple birth; prematurity; qualitative; special needs; thematic analysis; twins

Indexed keywords

ARTICLE; BED REST; CHILD HEALTH CARE; CONTROLLED STUDY; DEPERSONALIZATION; EMBRYO TRANSFER; EXPLORATORY RESEARCH; FEMALE; FERTILIZATION IN VITRO; GRIEF; GUILT; HEALTH CARE DISPARITY; HEALTH CARE NEED; HUMAN; MATERNAL ATTITUDE; MATERNAL STRESS; MATERNAL WELFARE; MENTAL HEALTH; MULTIPLE PREGNANCY; NEWBORN MORTALITY; PERINATAL PERIOD; PERSONAL EXPERIENCE; PREGNANCY; PREMATURITY; PRIORITY JOURNAL; PSYCHOLOGICAL ASPECT; PUERPERIUM; QUALITATIVE ANALYSIS; QUALITATIVE RESEARCH; THEMATIC ANALYSIS; ADAPTIVE BEHAVIOR; ADULT; AUSTRALIA; HANDICAPPED CHILD; INTERVIEW; MENTAL STRESS; MOTHER; NEWBORN; REPRODUCIBILITY; SOCIAL SUPPORT; TWIN PREGNANCY;

ADAPTATION, PSYCHOLOGICAL; ADULT; DISABLED CHILDREN; FEMALE; HUMANS; INFANT, NEWBORN; INFANT, PREMATURE; INTERVIEWS AS TOPIC; MOTHERS; PREGNANCY; PREGNANCY, TWIN; QUALITATIVE RESEARCH; REPRODUCIBILITY OF RESULTS; SOCIAL SUPPORT; STRESS, PSYCHOLOGICAL; VICTORIA;

EID: 84866441105     PISSN: 18324274     EISSN: None     Source Type: Journal    
DOI: 10.1017/thg.2012.24     Document Type: Article

References (56)

1. Baum, L. S. (2004). Internet parent support groups for primary caregivers of a child with special health care needs. Pediatric Nursing, 30, 381-401.
2. Bethell, C. D., Read, D., Stein, R. E. K., Blumberg, S. J.,Wells, N., & Newacheck, P. W. (2002). Identifying children with special health care needs: Development and evaluation of a short screening instrument. Ambulatory Pediatrics, 2, 38-48.
3. Boudou, M., S'ejourn'e, N., & Chabrol, H. (2007). Douleur de l'accouchement, dissociation et d'etresse p'erinatales comme variables pr'edictives de sympt̂omes de stress posttraumatique en post-partum. Gyn'ecologie Obst'etrique and Fertilit'e, 35, 1136-1142.
4. Boyatzis, R. E. (1998). Transforming qualitative information: thematic analysis and code development. Thousand Oaks: Sage Publications.
5. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77-101.
6. Bryan, E. (2003). The impact of multiple preterm births on the family. BJOG: An International Journal of Obstetrics and Gynaecology, 110, 24-28.
7. Bryan, E. (2005). Psychological aspects of prenatal diagnosis and its implications in multiple pregnancies. Prenatal Diagnosis, 25, 827-834.
8. Carle, A. C., Blumberg, S. J., & Poblenz, C. (2011). Internal psychometric properties of the children with special health care needs screener. Academic Pediatrics, 11, 128-135.
9. Centers for Disease Control and Prevention, American Society for Reproductive Medicine, & Society for Assisted Reproductive Technology (2010). 2008 Assisted reproductive technology success rates: National summary and fertility clinic reports. Atlanta: U.S. Department of Health and Human Services.
10. Chin, S.D.,Hope, L.,&Christos, P. J. (2006).Randomized controlled trial evaluating the effects of cobedding on weight gain and physiologic regulation in preterm twins in the NICU. Advances in Neonatal Care, 6, 142-149.
11. Cleveland, L. M. (2008). Parenting in the Neonatal Intensive Care Unit. Journal of Obstetric, Gynecologic and Neonatal Nursing, 37, 666-691.
12. Consultative Council on Obstetric and Paediatric Mortality andMorbidity. (2010). Consultative council on obstetric and paediatric mortality and morbidity (CCOPMM) annual report for the year 2007. Melbourne: Victorian Government Department of Health.
13. Cooper, C. (2004). Twins and multiple births: The essential parenting guide from pregnancy to adulthood. London: Vermilion.
14. Cuisinier, M., de Kleine, M., Koll'ee, L., Bethlehem, G., & de Graauw, C. (1996). Grief following the loss of a newborn twin compared to a singleton.Acta Paediatrica, 85, 339-343.
15. De Vos, B., Jacobs, N., Vandemeulebroecke, L., Derom, C., & Fryns, J. (2002). Coping with twins discordant for intellectual disabilities: The mothers' view. Twin Research and Human genetics, 5, 227-230.
16. Doka, K. (Ed.). (1989). Disenfranchized grief: Recognizing hidden sorrow. New York: Lexington Books.
17. Fenwick, J., Barclay, L., & Schmied, V. (2008). Craving closeness: A grounded theory analysis of women's experiences of mothering in the Special Care Nursery. Women and Birth, 21, 71-85.
18. Fisher, J.,Astbury, J.,&Smith, A. (1997).Adverse psychological impact of operative obstetric interventions: A prospective longitudinal study. Australian and New Zealand Journal of Psychiatry, 31, 728-738.
19. Fisher, J.,&Stocky, A. (2003).Maternal perinatal mentalhealth and multiple births: Implications for practice. Twin Research, 6, 506-513.
20. Fisher, J.R.W.,Hammarberg, K.,&Baker, H.W. G. (2005).Assisted conception is a risk factor for postnatalmood disturbance and early parenting difficulties. Fertility and Sterility, 84, 426-430.
21. Flaherty, L., & Damato, E. G. (2009). Relationships among sleep duration, sleep quality, fatigue, and depression in fathers of twins. Western Journal of Nursing Research, 31, 1094-1095.
22. Glinianaia, S. V., Rankin, J., & Wright, C. (2008). Congenital anomalies in twins: A register-based study. Human Reproduction, 23, 1306-1311.
23. Gupton, A., Heaman,M., & Ashcroft, T. (1997). Bed rest from the perspective of the high-risk pregnant woman. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 26, 423-430.
24. Hall,W., & Irvine, V. (2009). E-communication amongmothers of infants and toddlers in a community-based cohort: A content analysis. Journal of Advanced Nursing, 65, 175-183.
25. Hay, D. A. (1999). Adolescent twins and secondary schooling. In A. Sandbank (Ed.), Twin and triplet psychology: A professional guide to working with multiples (pp. 119-142). London and New York: Routledge.
26. Hay, D. A., Gleeson, C., Davies, C., Lorden, B., Mitchell, D., & Paton, L. (1990). What information should the multiple birth family receive before, during and after the birth? Acta Geneticae Medicae et Gemellologiae (Roma), 39, 259-269.
27. Hay,D. A., Prior,M.,Collett, S.,&Williams,M. (1987). Speech and language development in preschool twins. Acta Geneticae Medicae et Gemellologiae (Roma), 36, 213-223.
28. Kirk, J., &Miller, M. L. (1986). Reliability and validity in qualitative research. Beverley Hills, CA: Sage Publications.
29. Kollbrunner, J., Menet, A., & Seifert, E. (2010). Psychogenic aphonia:No fixation even after a lengthy period of aphonia. Swiss Medical Weekly, 140, 12-17.
30. Lancaster, P., Huang, J., Pedisich, E., & AIHW National Perinatal Statistics Unit. (1994). Australia's mothers and their babies 1991. Perinatal Statistics Series No.1. Cat. No. AIHW 240. Canberra: AIHW.
31. Laws, P. J., Li, Z., & Sullivan, E. (2010). Australia's mothers and babies 2008. Perinatal Statistics Series No. 24. Cat. No. PER 50. Canberra: Australian Institute of Health andWelfare.
32. Leonard, B., Johnson, A., & Brust, J. (1993). Caregivers of children with disabilities: A comparison of thosemanaging 'OK' and those needing more help. Child Health Care, 22, 93-105.
33. Linney, J. (1980). The emotional and social aspects of having twins. Nursing Times, 76, 276-279.
34. Maloni, J. A., Britton, C., Zhang, C., Cohen, A., Betts, D., & Gange, S. (1993). Physical and psychosocial side effects of antepartum hospital bed rest. Nursing Research, 42, 202-203.
35. Maloni, J.A.,Margevicius,S.P.,&Damato, E.G. (2006).Multiple gestation: Side effects of antepartum bed rest. Biological Research For Nursing, 8, 115-128.
36. McDougall, M. R.,Hay,D.A.,&Bennett, K. S. (2006).Having a co-twin with attention-deficit hyperactivity disorder. Twin Research and Human genetics, 9, 148-154.
37. Morgan, D. L. (1998). Practical strategies for combining qualitative and quantitative methods: Applications to health research. Qualitative Health Research, 8, 362-376.
38. NVivo qualitative data analysis software; QSR International Pty Ltd. Version 8, 2008.
39. Olde, E., van der Hart, O., Kleber, R. J., van Son, M. J. M., Wijnen, H. A. A., & Pop, V. J. M. (2005). Peritraumatic dissociation and emotions as predictors of PTSD symptoms following childbirth. JournalOf Trauma& Dissociation: The Official Journal Of The International Society For The Study Of Dissociation (ISSD), 6, 125-142.
40. Olshansky, S. (1962). Chronic Sorrow: A response to having a mentally defective child. Social Casework, 43, 191-193.
41. Pharoah, P. O. (2006). Risk of cerebral palsy in multiple pregnancies. Clinics in Perinatology, 33, 301-313.
42. Pope, C.,&Mays, N. (1995). Reaching the parts other methods cannot reach: An introduction to qualitative methods in health and health services research. BritishMedical Journal, 311, 42-45.
43. Roos, S. (2002). Chronic sorrow: A living loss. New York and London: Routledge.
44. Rowe-Murray, H. J., & Fisher, J. R. W. (2001). Operative intervention in delivery is associated with compromised early mother-infant interaction. BJOG: An International Journal of Obstetrics and Gynaecology, 108, 1068-1075.
45. Simpson, L., & Paviour, A. (1994). More than one: Twins and multiples and how to survive them. East Roseville: Simon and Schuster.
46. Spillman, J. R. (1985). 'You have a little bonus, my dear'. The effect on mothers of the diagnosis of a multiple pregnancy. British Medical Ultrasound Society Bulletin, 39, 6-9.
47. Spillman, J. R. (1992). A study of maternity provision in the UK in response to the needs of families who have amultiple birth. Acta Geneticae Medicae et Gemellologiae (Roma), 41, 353-364.
48. Swanson, P., Pearsall-Jones, J., &Hay, D. (2002).How mothers cope with the death of a twin or higher multiple. Twin Research and Human Genetics, 5, 156-164.
49. Teel, C. S. (1991). Chronic sorrow: Analysis of the concept. Journal of Advanced Nursing, 16, 1311-1319.
50. Thorpe, K., Golding, J., MacGillivray, I., & Greenwood, R. (1991).Comparison of prevalence of depression in mothers of twins and mothers of singletons. BMJ: British Medical Journal, 302, 875-878.
51. Touch, S. M., Epstein, M. L., Pohl, C. A., & Greenspan, J. S. (2002). The impact of cobedding on sleep patterns in preterm twins. Clinical Pediatrics, 41, 425-431.
52. Tough, S. C., Newburn-Cook, C., Johnston, D. W., Svenson, L. W., Rose, S., & Belik, J. (2002). Delayed childbearing and its impact on population rate changes in lower birth weight,multiple birth, and pretermdelivery. (Cover story). Pediatrics, 109, 399.
53. Umstad,M. P., & Gronow, M. J. (2003).Multiple pregnancy: A modern epidemic? Medical Journal of Australia, 178, 613-615.
54. Umstad, M. P., & Lancaster, P. (2005). The epidemiology of multiple births in Australia. In I. Blickstein & L. G. Keith (Eds.), Multiple pregnancy - Epidemiology, Gestation and Perinatal Outsome (2nd ed.). London andNew York: Taylor & Francis 26-32.
55. Wang, Y.A.,Chambers,G.M.,&Sullivan, E. A. (2010).Assisted reproduction technology in Australia and New Zealand 2008. Canberra: Australian Institute of Health andWelfare.
56. Yokoyama, Y. (2003). Comparison of child-rearing problems between mothers with multiple children who conceived after infertility treatment and mothers of multiple children who conceived spontaneously. Twin Research, 6, 89-96.