Nursing's contribution to research about parenting children with complex chronic conditions: Anintegrativereview, 2002 to 2012

Nursing Outlook

Volumn 61, Issue 5, 2013, Pages 266-290

  Rehm, Roberta S ^a  

^a UNIVERSITY OF CALIFORNIA   (United States)

Author keywords

Adolescent; Child; Children with special health care needs; Complex chronic conditions; Medically fragile; Parenting; Technology dependent

Indexed keywords

ADOLESCENT; ARTICLE; CHILD; CHILD PARENT RELATION; CHILDREN WITH SPECIAL HEALTH CARE NEEDS; CHRONIC DISEASE; COMPLEX CHRONIC CONDITIONS; HEALTH SERVICES RESEARCH; HUMAN; MEDICALLY FRAGILE; NURSING RESEARCH; TECHNOLOGY DEPENDENT;

ADOLESCENT; CHILD; CHILDREN WITH SPECIAL HEALTH CARE NEEDS; COMPLEX CHRONIC CONDITIONS; MEDICALLY FRAGILE; PARENTING; TECHNOLOGY DEPENDENT;

CHILD; CHRONIC DISEASE; HEALTH SERVICES RESEARCH; HUMANS; NURSING RESEARCH; PARENTING;

EID: 84883793886     PISSN: 00296554     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.outlook.2013.03.008     Document Type: Article

References (52)

1. American Nurses Association (ANA), National Association of Pediatric Nurse Practitioners, & Society of Pediatric Nurses (2008). Pediatric nursing: Scope and standards of practice. Nursesbooks.org: The publishing program of ANA. Retrieved from: http://www.nursesbooks.org/Main-Menu/Standards/O-Z/Pediatric-Nursing-Scope-and-Standards-of-Practice.aspx.
2. Rehm R.S. Normalization in families raising a child who is medically fragile/technology-dependent and developmentally delayed. Qual Health Res 2005, 15:807-820. 10.1177/1049732305276754.
3. Rehm The search for social safety and satisfaction in families raising children with complex chronic conditions. JFam Nurs 2005, 11:59-78. doi: 0.1177/1074840704272956.
4. Bethell C.D., Read D., Stein R.E.K., Blumberg S.J., Wells N., Newacheck P.W. Identifying children with special health care needs: Development and evaluation of a short screening instrument. Ambul Pediatr 2002, 2:38-48. 10.1367/1539-4409(2002)002L0038:ICWSHC>2.0.CO;2.
5. Bramlett M., Reed D., Bethell C., Blumberg S.J. Differentiating subgroups of children with special health care needs by health status and complexity of health care. Matern Child Health J 2009, 13:151-163. 10.1007/S10945-008-0339-z.
6. Carnevale F.A., Alexander E., Davis M., Rennick J., Troini R. Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home. Pediatrics 2006, 117:e48-e60. 10.1542/peds.2005-0789.
7. Carter B., Cummings J., Cooper L. An exploration of best practice in multi-agency working and the experiences of families of children with complex health needs. What works well and what needs to be done to improve practice for the future?. JClin Nurs 2007, 16:527-539. 10.1111/j.1365-2702.2006.01554.x.
8. Child and Adolescent Health Measurement Initiative. (n.d.). Data Resource Center for Child and Adolescent Health. Retrieved August 1, 2012, from http://www.cahmi.org.
9. Cohen E., Kuo D.Z., Agrawal R., Berry J.G., Bhagat S.K.M., Simon T., Srivastava R. Children with medical complexity: An emerging population for clinical and research initiatives. Pediatrics 2011, 127:529-538.
10. Deatrick J.A., Knafl K.A., Murphy-Moore C. Clarifying the concept of normalization. Image: J Nurs Scholarship 1999, 31:209-214. 10.1111/j.1547-5069.1999.tb00482.x.
11. Dosa N.P., Boeing N.M., Kanter R.K. Excess risk of severe acute illness in children with chronic health conditions. Pediatrics 2001, 107:499-504. 10.1542/peds.107.3.499.
12. Edwards J.D., Houtrow A.J., Vasilevskis E.E., Rehm R.S., Markovitz B.P., Graham R.J., Dudley R.A. Chronic conditions among children admitted to U.S. pediatric intensive care units: Their prevalence and impact on risk for mortality and prolonged length of stay. Crit Care Med 2012, 40:196-203. http://dx.doi.org/1097/CCM.0b013e31824e68cf.
13. Feudtner, C., Hays, R. M., Haynes, G., Geyer, J. R., Neff, J. M., & Koepsell, T.D. (2001). Deaths attributed to pediatric complex chronic conditions: National trends and implications for supportive care services. Downloaded from pediatrics.aappublications.org: www.pediatrics.org/cgi/content/full/107/6/e99.
14. Harrigan R.C., Ratliffe C., Patrinos M.E., Tse A. Medically fragile children: An integrative review of the literature and recommendations for future research. Issues Compr Pediatr Nurs 2002, 25:1-20. 10.1080/014608602753504829.
15. Hobson L., Noyes J. Fatherhood and children with complex healthcare needs: Qualitative study of fathering, caring and parenting. BMC Nursing 2011, 10:5. 10.1186/1472-6955-10-5.
16. Holditch-Davis D., Miles M.S., Burchinal M.R., Goldman B.D. Maternal role attainment with medically fragile infants: Part 2. Relationship to the quality of parenting. Res Nurs Health 2011, 34:25-48. 10.1002/nur.20418.
17. Houtrow A.J., Okumura M.J., Hilton J.F., Author R.S. Profiling health and health-related services for children with special health care needs with and without disabilities. Acad Pediatr 2011, 11:508-516. 10.1016/j.acap.2011.08.004.
18. Judson L.H. Protective care: Mothering a child dependent on parenteral nutrition. JFam Nurs 2004, 10:93-120. 10.1177/1074840703260907.
19. Kirk S., Glendinning C., Gallery P. Parent or nurse? The experience of being the parent of a technology-dependent child. JAdv Nurs 2005, 51:456-464. 10.1111/j.1365-2648.2005.03522.x.
20. Knafl K.A., Darney B.G., Gallo A.M., Angst D.B. Parental perception of the outcome and meaning of normalization. Res Nurs Health 2010, 33:87-98. 10.1002/nur.20367.
21. Kuhlthau K., Perrin M.J., Ettner S.L., McLaughlin T.J., Gortmaker S.L. High-expenditure children with supplemental security income. Pediatrics 1998, 102(3):610-615. 10.1542/peds.102.3.610.
22. Kuo D.Z., Cohen E., Agrawal R., Berry J., Casey P.H. Anational profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med 2011, 165:1020-1026.
23. Kuster P.A., Badr L.K., Chang B.L., Wuerker A.K., Benjamin A.E. Factors influencing health promoting activities of mothers caring for ventilator-assisted children. JPediatr Nurs 2004, 19:276-287. 10.1016/j.pedn.2004.05.009.
24. Lauver L.S. The lived experience of foster parents of children with special needs living in rural areas. JPediatr Nurs 2010, 25:289-298. 10.1016/j.pedn.2009.04.004.
25. Lee T.Y., Miles M.S., Holditch-Davis D. Fathers' support to mothers of medically fragile infants. J Obstet Gynecol Neonatal Nurs 2006, 35(1):46-55.
26. Lee T.Y., Holditch-Davis D., Miles M.S. The influence of maternal and child characteristics and paternal support on interactions of mothers and their medically fragile infants. Res Nurs Health 2007, 30:17-30. 10.1002/nur.20184.
27. Lindahl B., Lindblad B.M. Family members' experiences of everyday life when a child is dependent on a ventilator: A metasynthesis study. JFam Nurs 2011, 17:241-269. doi: 101177/1074840711405392.
28. Looman W.S., O'Conner-Von S.K., Fersjum G.J., Hildenbrand D.A. Financial and employment problems in families of children with special health care needs: Implications for research and practice. JPediatr Healthc 2009, 23:117-125.
29. McDonald H., Callery P. Parenting children requiring complex care: A journey through time. Child Care Health Dev 2007, 34:207-213.
30. McDonald H.L., Gibson C.H. Parenting children requiring complex care at home: Revisiting normalization and stigma. Nurs Healthc Chronic Illness 2010, 2:241-250.
31. McPherson M., Arango P., Fox H., Lauver C., McManus M., Newacheck P.W., Strickland B. Anew definition of children with special health care needs. Pediatrics 1998, 102:137-140. 10.1542/peds.102.1.137.
32. Mentro A.M. Health care policy for medically fragile children. JPediatr Nurs 2003, 18:225-232. 10.1016/S0882-5963(03)00085.X.
33. Miles M.S., Holditch-Davis D., Burchinal P., Nelson D. Distress and growth outcomes in mothers of medically fragile infants. Nurs Res 1999, 48(3):129-140. 10.1097/00006199-199905000-00003.
34. Miles M.S., Burchinal P., Holditch-Davis D., Brunssen S., Wilson S.M. Perceptions of stress, worry and support in black and white mothers of hospitalized, medically fragile infants. JPediatr Nurs 2002, 17:82-88. 10.1053/jpdn.2002.124125.
35. Miles M.S., Holditch-Davis D., Burchinal M.R., Brunssen S. Maternal role attainment with medically fragile infants: Part 1. Measurement and correlates during the first year of life. Res Nurs Health 2011, 34:20-34.
36. Montagnino B.A., Mauricio R.V. The child with a tracheostomy and gastrostomy: Parental stress and coping in the home-A pilot study. Pediatr Nurs 2004, 30:373-380. 401. 10.1097/00130478-200409000-00061.
37. Morse J.M., Wilson S., Penrod J. Mothers and their disabled children: Refining the concept of normalization. Health Care Women Int 2000, 21:659-676.
38. Newacheck P.W., Kim S. Anational profile of health care utilization and expenditures for children with special health care needs. Arch Pediatr Adolesc Med 2005, 159:10-17. 10.1001/archpedi.159.1.10.
39. O'Brien M.E., Wegner C.B. Rearing the child who is technology dependent: Perceptions of parents and home care nurses. JSpecialists Pediatr Nurs 2002, 7(1):7-15. 10.1111/j.1744-6155.2002.tb00143.x.
40. Technology-Dependent Children: Hospital V. Home Care-A Technical Memorandum (OTA-TM-H-38) 1987, Office of Technology Assessment, Government Printing Office, Washington, DC.
41. Pluye P., Gagnon M.P., Griffiths F., Johnson-Lafleur J. Ascoring system for appraising mixed methods research and concomitantly appraising qualitative, quantitative and mixed methods primary studies in mixed studies reviews. Int J Nurs Stud 2009, 46:529-546. 10.1016/j.ijnurstu.2009.01.009.
42. Pluye, P., Robert, E., Cargo, M., Bartlett, G., O'Cathain, A., Griffiths, F., Rousseau, M.C. (2011). Proposal: A mixed methods appraisal tool for systematic mixed studies reviews. Retrieved on January 15, 2013 from: http//mixedmethedsappraisaltoolpublic.pbworks.com. Archived by WebCite at http://ww.webcitation.org/5tTRTc0y.
43. Ratliffe C.E., Harrigan R.C., Haley J., Tse A., Olson T. Stress in families with medically fragile children. Issues Compr Pediatr Nurs 2002, 25:167-188. 10.1080/01460860290042558.
44. Reeves E., Timmons S., Dampier S. Parents' experiences of negotiating care for their technology-dependent child. JChild Health Care 2006, 10:228-239. 10.1177/1367493506066483.
45. Rehm R.S., Bradley J.F. Normalization in families raising a child who is medically fragile/technology-dependent and developmentally delayed. Qual Health Res 2005, 15:807-820. 10.1177/1049732305276754.
46. Rehm R.S., Bradley J.F. The search for social safety and satisfaction in families raising children with complex chronic conditions. J Fam Nurs 2005, 11:59-78. 10.1177/1074840704272956.
47. Simon T.D., Berry J., Feudtner C., Stone B.L., Sheng X., Bratton S.L., Srivastava R., et al. Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics 2010, 126:647-655.
48. Toly V.B., Musil C.M., Carl J.C. Families with children who are technology dependent: Normalization and family functioning. West J Nurs Res 2012, 34:52-71. 10.1177/0193945910389623.
49. Toly V.B., Musil C.M., Carl J.C. Alongitudinal studyof families with technology-dependent children. ResNurs Health 2012, 35:40-54. 10.1002/nur.21454.
50. Wang K.-W., Barnard A. Caregivers' experiences at home with a ventilator-dependent child. Qual Health Res 2008, 18:501-508. 10.1177/1049732307306185.
51. Wang K.-W., Barnard A. Technology-dependent children and their families: A review. JAdv Nurs 2004, 45:36-46. 10.1046/j.1365-2648.2003.02858.x.
52. Whittemore R., Knafl K. The integrative review: Updated methodology. JAdv Nurs 2005, 52:546-553.