Examining In-Home Care Needs and Work Responsibilities for Parents with Children with A Rare Trisomy Condition

References

• Brewer C, Holloway S, Stone D, Carothers A, Fitzpatrick D. 2002. Survival in trisomy 13 and trisomy 18 cases ascertained from population based registers, J. Med. Genet., 39, 54–56.
   PubMedGoogle Scholar
• Bruns D. 2011a. Birth history, physical characteristics, and medical conditions in long-term survivors with full trisomy 13, Am. J. Med. Genet. Part A, 155A, (11), 2634–2640.
   PubMed Web of Science ®Google Scholar
• Bruns D. 2011b. Presenting physical characteristics, medical conditions and developmental status of long-term survivors with trisomy 9 mosaicism, Am. J. Med. Genet. Part A, 155A, (5), 1033–1039.
   PubMed Web of Science ®Google Scholar
• Bruns DA. 2010. Neonatal experiences of newborns with full trisomy 18, Adv. Neonatal Care, 10, 25–31.
   PubMedGoogle Scholar
• Bruns D, Foerster K. 2011. We’ve been through it all together: supports for parents with children with rare trisomy conditions, J. Intell. Disabil. Res., 55, (4), 361–369.
   Google Scholar
• Carey J. 2010. Trisomy 18 and trisomy 13 syndromes, in Management of genetic syndromes, (ed. S. B. Cassidy and J. E. Allanson), 3rd edn; Hoboken, NJ, Wiley-Blackwell, 555–568.
   Google Scholar
• Corbin J, Strauss A. 2008. Basics of qualitative research: techniques and procedures for developing grounded theory, 3rd edn; Los Angeles, CA, Sage.
   Google Scholar
• Courtwright AM, Laughon MM, Doron MW. 2010. Length of life and treatment intensity in infants diagnosed prenatally or postnatally with congenital anomalies considered lethal, J. Perinatol., 31, 387–391.
   PubMed Web of Science ®Google Scholar
• Crider KS, Olney RS, Cragan JD. 2008. Trisomies 13 and 18: population prevalences, characteristics, and prenatal diagnosis, Metropolitan Atlanta, 1994–2003, Am. J. Med. Genet. Part A, 146A, 820–826.
   PubMed Web of Science ®Google Scholar
• Curran AL, Sharples PM, White C, Knapp M. 2001. Time cost of caring for children with severe disabilities compared with caring for children without disabilities, Dev. Med. Child Neurol., 43, 529–533.
   PubMed Web of Science ®Google Scholar
• Fidler DJ, Hodapp RM, Dykens EM. 2000. Stress in families of young children with Down syndrome, Williams syndrome and Smith–Magenis syndrome, Early Educ. Dev., 11, (4), 395–406.
   Google Scholar
• Foster RH, Kanotra S, Stern M, Elsea SH. 2011. Educational and occupational aspirations among mothers caring for a child with Smith–Magenis syndrome, J. Dev. Phys. Disabil., 23, (6), 501–514.
   Google Scholar
• Graham EM, Bradley SM, Shirali GS, Hills CB, Atz AM. 2004. Effectiveness of cardiac surgery in trisomies 13 and 18 (from the Pediatric Cardiac Care Consortium), Am. J. Cardiol., 93, 801–803.
   Google Scholar
• Heiman T. 2002. Parents of children with disabilities: resilience, coping and future expectations, J. Dev. Phys. Disabil., 14, (2), 159–171.
   Google Scholar
• Huberman AM, Miles MB. 1994. Data management and analysis methods, in Handbook of qualitative research, (ed. N. K. Denzin and Y. S. Lincoln). 428– 444; Thousand Oaks, CA, Sage.
   Google Scholar
• Irving C, Richmond S, Wren C, Longster C, Embleton ND. 2011. Changes in fetal prevalence and outcome for trisomies 13 and 18: a population based study over 23 years, J. Matern. Fetal Neonatal Med., 24, 137–141.
   PubMed Web of Science ®Google Scholar
• Janvier A, Farlow B, Wilfond B. 2012. The experience of families with children with trisomy 13 and 18 in social networks, Pediatrics, 130, (2), 293–298.
   Google Scholar
• Jones KL. 2006. Smith’s recognizable patterns of human malformation, 6th edn; Philadelphia, PA, Elsevier Saunders.
   Google Scholar
• Kaneko Y, Kobayashi J, Yamamoto Y, Yoda H, Kanetaka Y, Nakajima Y, Endo D, Tsuchiya K, Sato H, Kawakami T. 2008. Intensive cardiac management in patients with Trisomy 13 or Trisomy 18, Am. J. Med. Genet. Part A, 146A, 1372–1380.
   Google Scholar
• Kosho T, Nakamura T, Kawame H, Baba A, Tamura M, Fukushima Y. 2006. Neonatal management of trisomy 18: clinical details of 24 patients receiving intensive treatment, Am. J. Med. Genet. Part A, 140, 937–944.
   PubMed Web of Science ®Google Scholar
• Kuhlthau K, Hill KS, Yucel R, Perrin JM. 2005. Financial burden for families of children with special health care needs, Matern. Child Health J., 9, (2), 207–218.
   PubMed Web of Science ®Google Scholar
• Kuhlthau K, Perrin JM. 2001. Child health status and parental employment, Arch. Pediatr. Adolesc. Med., 155, 1346–1350.
   PubMed Web of Science ®Google Scholar
• Lakovschek IC, Streubel B, Ulm B. 2011. Natural outcome of trisomy 13, trisomy 18, and triploidy after prenatal diagnosis, Am. J. Med. Genet. Part A, 155A, 2626–2633.
   PubMed Web of Science ®Google Scholar
• Lewis S, Kagan C, Heaton P. 2000. Dual-earner parents with disabled children: Family patterns for working and caring, J. Family Issues, 21, 1031–1060.
   Web of Science ®Google Scholar
• Lincoln Y.S., Guba E.G. 1985. Naturalistic inquiry; Newbury Park, CA, Sage.
   Google Scholar
• Loprest P, Davidoff A. 2004. How children with special health care needs affect the employment decisions of low-income parents, Matern. Child Health J., 8, (3), 171–182.
   PubMed Web of Science ®Google Scholar
• Maeda J, Yamagishi H, Furutani Y, Kamisago M, Waragai T, Oana S, Kajino H, Matsuura H, Mori K, Matsuoka R, Nakanishi T. 2011. The impact of cardiac surgery in patients with trisomy 18 and trisomy 13 in Japan, Am. J. Med. Genet. Part A, 155, 2641–2646.
   Google Scholar
• McManus BM, Carle A, Acevedo-Garcia D, Ganz M, Hauser-Cram P, McCormick M. 2011. Modeling the social determinants of caregiver burden among families of children with developmental disabilities, Am. J. Intell. Dev. Disabil., 116, (3), 246–260.
   PubMedGoogle Scholar
• Miles M.B., Huberman A.M. 1994. Qualitative data analysis: an expanded sourcebook, 2nd edn; Thousand Oaks, CA, Sage.
   Google Scholar
• Parish SL. 2006. Juggling and struggling: a preliminary work-life study of mothers with adolescents who have developmental disabilities, Ment. Retard., 44, (6), 393–404.
   PubMedGoogle Scholar
• Patton M.Q. 2002. Qualitative research and evaluation methods, 3rd edn; Thousand Oaks, CA, Sage.
   Google Scholar
• Porterfield SL. 2002. Work choices of mothers in families with children with disabilities, J. Marr. Family, 64, 972–981.
   Web of Science ®Google Scholar
• Powers ET. 2001. New estimates of the impact of child disability of maternal employment, Am. Econ. Rev., 91, (2), 135–139.
   PubMed Web of Science ®Google Scholar
• Rasmussen S, Wong L, Yang Q, May K, Friedman J. 2003. Population-based analyses of mortality in trisomy 13 and trisomy 18, Pediatrics, 111, 777–784.
   PubMed Web of Science ®Google Scholar
• Roach MA, Orsmond GI, Barratt MS. 1999. Mothers and fathers of children with Down syndrome: parental stress and involvement in childcare, Am. J. Ment. Retard., 104, (5), 422–436.
   PubMedGoogle Scholar
• Scott EK. 2010. ‘I feel as if I am the one who is disabled’: the emotional impact of changed employment trajectories of mothers caring for children with disabilities, Gender Soc., 24, (5), 672–696.
   Web of Science ®Google Scholar
• Seltzer MM, Greenburg JS, Floyd FJ, Pette Y, Hong J. 2001. Life course impacts of parenting a child with a disability, Am. J. Ment. Retard., 106, (3), 265–286.
   PubMedGoogle Scholar
• Shearn J, Todd S. 2000. Maternal employment and family responsibilities: the perspective of mothers of children with intellectual disabilities, J. Appl. Res. Intell. Disabil., 13, 109–131.
   Web of Science ®Google Scholar
• Simmerman S., Blacher J, Baker BL. 2001. Fathers ‘and mothers’ perceptions of father involvement in families with young children with a disability, J. Intell. Dev. Disabil., 26, 325–38.
   Web of Science ®Google Scholar
• Skotko BG, Levine SP, Goldstein R. 2011. Having a son or daughter with Down syndrome: perspectives from mothers and fathers, Am. J. Med. Genet. Part A, 155A, 2335–2347.
   PubMed Web of Science ®Google Scholar
• SPSS. 2008. SPSS 16·0 for Windows; Chicago, IL, SPSS, Inc.
   Google Scholar
• Summers JA, Poston DJ, Turnbull AP, Marquis J, Hoffman L, Mannan H, Wang M. 2005. Conceptualizing and measuring family quality of life, J. Intell. Disabil. Res., 49, (10), 777–783.
   PubMedGoogle Scholar
• Thyen U, Kuhlthau K, Perrin JM. 1999. Employment, child care, and mental health of mothers caring for children assisted by technology, Pediatrics, 103, (6), 1235–1242.
   PubMed Web of Science ®Google Scholar
• Trute B, Hiebert-Murphy D, Levine K. 2007. Parental appraisal of the family impact of childhood developmental disability: times of sadness and times of joy, J. Intell. Dev. Disabil., 32, 1–9.
   PubMed Web of Science ®Google Scholar
• Vendola C, Canfield M, Daiger SP, Gambello M, Hashmi SS, King T, Noblin SJ, Waller DK, Hecht JT. 2010. Survival of Texas infants born with trisomies 21, 18 and 13, Am. J. Med. Genet. Part A, 152A, 360–366.
   PubMed Web of Science ®Google Scholar
• Walker LV, Miller VJ, Dalton VK. 2008. The health care experiences of families given the prenatal diagnosis of trisomy 18, J. Perinatol., 28, (1), 12–19.
   PubMed Web of Science ®Google Scholar
• Wang KWK, Barnard A. 2004. Technology-dependent children and their families: a review, J. Adv. Nurs., 45, (1), 36–46.
   PubMed Web of Science ®Google Scholar
• Wang M, Turnbull AP, Summers JA, Little TD, Poston DJ, Mannan H, Turnbull R. 2004. Severity of disability and income as predictors of parents’ satisfaction with their family quality of life during early childhood years, Res. Pract. Persons Severe Disabil., 29, (2), 82–94.
   Web of Science ®Google Scholar
• Zuna NI, Turnbull A, Summers JA. 2009. Family quality of life: moving from measurement to application, J. Policy Pract. Intell. Disabil., 6, (1), 25–31.
   Web of Science ®Google Scholar