References
-
1
Kuo DZ Cohen MD Agrawal R Berry JG Casey PH A national profile of caregiver challenges among more medically complex children with special health care needs Archives of Pediatrics & Adolescents Medicine 2011 165 111 1020 26 http://dx.doi.org/10.1001/archpediatrics.2011.172 -
2
Fraser LK Miller M Hain R Norman P Aldridge J McKinney PA Rising national prevalence of life-limiting conditions in children in England Pediatrics 2012 129 4 923 29 http://dx.doi.org/10.1542/peds.2011-2846 -
3
Elias E Murphy NA Home care of children and youth with complex health care needs and technology dependencies Pediatrics 2012 129 996 1005 http://dx.doi.org/10.1542/peds.2012-0606 -
4
Millar AR Condin CJ McKellin WH Shaw N Klassen AF Sheps S Continuity of care for children with complex chronic health conditions: parents’ perspectives BMC Health Services Research 2009 9 142 http://dx.doi.org/10.1186/1472-6963-9-242 -
5
Manhas K Mitchell I Extremes, uncertainty and responsibility across boundaries: facets and challenges of the experience of transition to complex, pediatric home care Journal of Child Health Care 2012 16 3 224 36 http://dx.doi.org/10.1177/1367493511430677 -
6
Toly V Musil C Carl J Families with children who are technology dependent: normalization and family functioning Western Journal of Nursing Research 2012 34 1 52 71 http://dx.doi.org/10.1177/1367493511430677 -
7
Noyes J Brenner M Fox P Guerin A Reconceptualizing children's complex discharge with health systems theory: novel integrative review with embedded expert consultation and theory development Journal of Advanced Nursing 2014 70 5 975 96 http://dx.doi.org/10.1111/jan.12278 -
8
Wolfe I Thompson M Gill P Tamburlini G Blair M van den Bruel A Health services for children in western Europe Lancet 2013 381 9873 1224 1234 -
9
Tamburlini G Child health and child health services in Italy Medico e Bambino 2012 31 178 84 -
10
Fairtlough AC Adapting the voice-centred relational method of data analysis: reading trainees’ accounts of their learning on a pilot programme for practitioners working with parents Learning in Health and Social Care 2007 6 1 2 3 http://dx.doi.org/10.1111/j.1473-6861.2007.00143.x -
11
Denzin NK Lincoln YS Handbook of qualitative research 2000 2nd ed Thousand Oaks, CA Sage -
12
Margolan H Fraser J Lenton S Parental experiences of services when their child requires long-term ventilation. Implications for commissioning and providing services Child: Care, Health & Development 2004 30 3 257 64 -
13
Nicholl HM Begley CM Explicating caregiving by mothers of children with complex needs in Ireland: a phenomenological study Journal of Paediatric Nursing 2012 27 6 642 51 http://dx.doi.org/10.1016/j.pedn.2011.07.003 -
14
Berry JG Ziniel SI Freeman L Kaplan W Antonelli R Gay J Hospital readmission and parent perceptions of their child's hospital discharge International Journal for Quality in Health Care 2013 25 5 573 81 http://dx.doi.org/10.1093/intqhc/mzt051 -
15
Kirk S Glendinning C Developing services to support parents caring for a technology-dependent child at home Child: Care, Health and Development 2004 30 209 18 -
16
Stephens N Complex care packages, supporting seamless discharge for child and family Paediatric Nursing 2005 17 7 30 32 http://dx.doi.org/10.7748/paed2005.09.17.7.30.c1002 -
17
Law J McCann D O'May F Managing change in the care of children with complex needs: healthcare providers’ perspectives Journal of Advanced Nursing 2011 67 12 2551 60 http://dx.doi.org/10.1111/j.1365-2648.2011.05761.x -
18
Turchi RM Berhane Z Bethell C Pomponio A Antonelli R Minkovitz CS Care coordination for CSHCN: associations with family-provider relations and family/child outcomes Pediatrics 2009 124 Suppl 4 S428 34 http://dx.doi.org/10.1542/peds.2009-1255o -
19
Ehrlich C Kendall E Muenchberger H Spanning boundaries and creating strong patient relationships to coordinate care are strategies used by experienced chronic condition care coordinators Contemporary Nurse: A Journal for the Australian Nursing Profession 2012 42 1 67 75 http://dx.doi.org/10.5172/conu.2012.42.1.67 -
20
Young J McCann D Watson K Pitcher A Bundy R Greathead D Negotiation of care for a hospitalised child: nursing perspectives Neonatal, Paediatric and Child Health Nursing 2006 9 3 7 14 -
21
Elberg L Hogberg U Lindh V We feel like one, they see us as two’: new parent's discontent with postnatal care Midwifery 2010 26 463 468 http://dx.doi.org/10.1016/j.midw.2008.10.006 -
22
Lipstein EA Brinkman WB Britto MT What is known about parents’ treatment decisions? A narrative review of pediatric decision making Medical Decision Making 2012 32 2 246 58 http://dx.doi.org/10.1177/0272989x11421528 -
23
Pyke-Grimm KA Stewart JL Kelly KP Degner LF Parents of children with cancer: factors influencing their treatment decision making roles Journal of Pediatric Nursing 2006 21 350 61 http://dx.doi.org/10.1016/j.pedn.2006.02.005 -
24
Smith F International network pushes the case for children's nursing Nursing Children & Young People 2013 24 3 6 7 http://dx.doi.org/10.7748/ncyp2012.04.24.3.6.p7964 -
25
Royal College of Nursing The future for community children's nursing: challenges and opportunities 2014 London RCN -
26
Shuy RW Gubrium JF Holstien JA In-person versus telephone interviewing Handbook of interview 2002 Thousand Oaks, CA Sage 537 55 -
27
Trochim W Donnelly JP The research methods knowledge base 2007 Mason, OH Atomic Dog Publishing