Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on medication adherence

LIVE: Thursday 27th June 2024, 18:00-19:30 (CEST)
Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.
ADVANCED SEARCH
Log in
Top
European Journal of Pediatrics
Published in: European Journal of Pediatrics 11/2018

Open Access 01-11-2018 | Original Article

Children’s complex care needs: a systematic concept analysis of multidisciplinary language

Authors: Maria Brenner, Claire Kidston, Carol Hilliard, Imelda Coyne, Jessica Eustace-Cook, Carmel Doyle, Thelma Begley, Michael J. Barrett

Published in: European Journal of Pediatrics | Issue 11/2018

Login to get access

Abstract

Complex care in the arena of child health is a growing phenomenon. Although considerable research is taking place, there remains limited understanding and agreement on the concept of complex care needs (CCNs), with potential for ambiguity. We conducted a systematic concept analysis of the attributes, antecedents, and consequences of children’s CCNs from a multidisciplinary perspective. Our data sources included PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO. Inclusion criteria included publications in peer-reviewed journals between January 1990 and December 2017, written in the English language. One hundred and forty articles were included. We found that children’s CCNs refer to multidimensional health and social care needs, in the presence of a recognized medical condition or where there is no unifying diagnosis.
Conclusion: Children’s CCNs are individual and contextualized, are continuing and dynamic, and are present across a range of settings, impacted by family and healthcare structures. There remain extensive challenges to caring for these children and their families, precluding the possibility that any one profession can possess the requisite knowledge or scope to singularly provide high-quality competent care.
What is Known:
• Complex care is a growing phenomenon and population prevalence figures show that there is an increasing number of children with complex care needs (CCNs). However, the concept has not been systematically analyzed before, leaving it generally ill-defined and at times confusing.
What is New:
• This is the first time this concept has been systematically analyzed and this analysis provides a much-needed theoretical framework for understanding the multidimensional nature of CCNs in children.
• Children’s CCNs refer to multidimensional health and social care needs in the presence of a recognized medical condition or where there is no unifying diagnosis. They are individual and contextualized, are continuing and dynamic, and are present across a range of settings, impacted by family and healthcare structures. It is clear that the very nature of CCNs precludes the possibility that any one profession or discipline can possess the requisite knowledge or scope for high-quality competent care for this population.
Literature
1.
Adams RC, Elias ER (2014) Nonoral feeding for children and youth with developmental or acquired disabilities. Pediatrics 134:e1745–e1762PubMed
2.
Agrawal R (2015) Complex care in pediatrics: great progress, greater challenges. J Pediatr Rehabil Med 8:71–74PubMed
3.
Alexander E, Rennick JE, Carnevale F, Davis M (2002) Daily struggles: living with long-term childhood technology dependence. Can J Nurs Res 34:7–14PubMed
4.
Anderson LS (2013) The development and implementation of eSchoolCare: a novel health care support system for school nurses. ANS Adv Nurs Sci 36:289–303PubMed
5.
Archbold S, Athalye S, Mulla I, Harrigan S, Wolters-Leermakers N, Isarin J, Knoors H (2015) Cochlear implantation in children with complex needs: the perceptions of professionals at cochlear implant centres. Cochlear Implants Int 16:303–311PubMed
6.
Association of Maternal and Child Health Progams (2017) Standards for systems of care for children and youth with special health care needs. Association of Maternal and Child Health Programs, Washington
7.
Baider L (2011) Unsteady balance: the constraints of informal care. J Pediatr Hematol Oncol 33(Suppl 2):S108–S111PubMed
8.
Baird J, Rehm RS, Hinds PS, Baggott C, Davies B (2016) Do you know my child? Continuity of nursing care in the pediatric intensive care unit. Nurs Res 65:142–150PubMedPubMedCentral
9.
Beck JC (2014) Improving pediatric hematology/oncology care in the emergency department. J Oncol Pract 10:e26–e28PubMed
10.
Berry JG, Bloom S, Foley S, Palfrey JS (2010) Health inequity in children and youth with chronic health conditions. Pediatrics 126(Suppl 3):S111–S119PubMed
11.
Berry JG, Agrawal R, Kuo DZ, Cohen E, Risko W, Hall M, Casey P, Gordon J, Srivastava R (2011) Characteristics of hospitalizations for patients who use a structured clinical care program for children with medical complexity. J Pediatr 159:284–290PubMedPubMedCentral
12.
Berry JG, Hall M, Cohen E, O’Neill M, Feudtner C (2015) Ways to identify children with medical complexity and the importance of why. J Pediatr 67:229–237
13.
Bethell C, Forrest C, Stumbo S, Gombojav N, Carle A, Irwin C (2012) Factors promoting or potentially impeding school success: disparities and state variations for children with special health care needs. Matern Child Health J 16:35–43
14.
Bjorquist E, Nordmark E, Hallstrom I (2015) Living in transition—experiences of health and well-being and the needs of adolescents with cerebral palsy. Child Care Health Dev 41:258–265PubMed
15.
Breneol S, Belliveau J, Cassidy C, Curran JA (2017) Strategies to support transitions from hospital to home for children with medical complexity: a scoping review. Int J Nurs Stud 72:91–104PubMed
16.
Brenner M, Larkin P, Hilliard C, Cawley D, Howlin F, Connolly M (2015) Parents’ perspectives of the transition to home when a child has complex technological health care needs. Int J Integr Care 15:e035PubMedPubMedCentral
17.
Brenner M, Connolly M, Cawley D, Howlin F, Berry J, Quinn C (2016) Family and healthcare professionals’ perceptions of a pilot hospice at home programme for children: a qualitative study. BMC Palliat Care 15:89PubMedPubMedCentral
18.
Brenner M, Cote S, Boivin M, Tremblay R (2016) Severe congenital malformations, family functioning and parents’ separation/divorce: a longitudinal study. Child Care Health Dev 42(1):16–24PubMed
19.
Brenner M, O'Shea M, Larkin P, Kamionka S, Berry J, Hiscock H et al (2017) Exploring integration of care for children living with complex care needs across the European Union and European economic area. Int J Integr Care 17(2):1PubMedPubMedCentral
20.
Brenner M, Connolly M, Larkin P, Hilliard C, Howlin F, Cawley D (2017) Adaptation of a voice-centered relational framework to explore the perspective of parents who have transitioned to home with a child with complex care needs. Compr Child Adolesc Nurs 40(4):285–293PubMed
21.
Brett J (2007) Complex needs: improving access to out-of-school activities. Paediatr Nurs 9:36–39
22.
Brooks F, Bloomfield L, Offredy M, Shaughnessy P (2013) Evaluation of services for children with complex needs: mapping service provision in one NHS Trust. Prim Health Care Res Dev 14:52–62PubMed
23.
Brust JD, Leonard BJ, Sielaff BH (1992) Maternal time and the care of disabled children. Public Health Nurs 9:177–184PubMed
24.
Cadell S, Hemsworth D, Smit Quosai T, Steele R, Davies E, Liben S et al (2014) Posttraumatic growth in parents caring for a child with a life-limiting illness: a structural equation model. Am J Orthop 84:123–133
25.
Cady RG (2017) Care mapping for the medically complex child. Dev Med Child Neurol 59(12):1216–1217PubMed
26.
Caicedo C (2014) Families with special needs children: family health, functioning, and care burden. J Am Psychiatr Nurses Assoc 20:398–407PubMed
27.
28.
Carnevale FA, Teachman G, Bogossian A (2017) A relational ethics framework for advancing practice with children with complex health care needs and their parents. Compr Child Adolesc Nurs 40(4):268–284
29.
Carter B, Bray L (2017) Parenting a child with complex health care needs: a stressful and imposed “clinical career”. Compr Child Adolesc Nurs 40(4):219–222PubMed
30.
Carter B, Cummings J, Cooper L (2007) 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? J Clin Nurs 16:527–539PubMed
31.
Ciccarelli MR, Gladstone EB, Armstrong Richardson EAJ (2015) Implementation of a transdisciplinary team for the transition support of medically and socially complex youth. J Pediatr Nurs 30:661–667PubMed
32.
Coad J, Toft A, Lapwood S, Manning J, Hunter M, Jenkins H, Sadlier C, Hammonds J, Kennedy A, Murch S, Widdas D (2017) Blended foods for tube-fed children: a safe and realistic option? A rapid review of the evidence. Arch Dis Child 102:274–278PubMed
33.
Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SKM, Simon TD, Srivastava R (2011) Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics 127:529–538PubMedPubMedCentral
34.
Cohen E, Lacombe-Duncan A, Spalding K, Macinnis J, Nicholas D, Narayanan UG et al (2012) Integrated complex care coordination for children with medical complexity: a mixed-methods evaluation of tertiary care-community collaboration. BMC Health Serv Res 12:366–366PubMedPubMedCentral
35.
Coller RJ, Nelson BB, Klitzner TS, Saenz AA, Shekelle PG, Lerner CF, Chung PJ (2017) Strategies to reduce hospitalizations of children with medical complexity through complex care: expert perspectives. Acad Pediatr 17:381–388PubMed
36.
Com G, Kuo DZ, Bauer ML, Lenker CV, Melguizo-Castro MM, Nick TG, Makris CM (2013) Outcomes of children treated with tracheostomy and positive-pressure ventilation at home. Clin Pediatr 52(1):54–61
37.
Coquillette M, Cox JE, Cheek S, Webster RA (2015) Social work services utilization by children with medical complexity. Matern Child Health J 19:2707–2713PubMed
38.
Cottrell L, Khan A (2005) Impact of childhood epilepsy on maternal sleep and socioemotional functioning. Clin Pediatr (Phila) 44:613–616
39.
Council on Children with Disabilities and Medical Home Implementation Project Advisory Committee (2014) Patient- and family-centered care coordination: a framework for integrating care for children and youth across multiple systems. Pediatrics 133(5)
40.
41.
Dingemans AJM, Reck CA, Vilanova-Sanchez A, Gonzalez DO, Gasior AC, Weaver LJ et al (2017) Does clinic visit education within a multidisciplinary center improve health literacy scores in caregivers of children with complex colorectal conditions? J Pediatr Surg 52(12):1997–2000PubMed
42.
Duc JK, Herbert AR, Heussler HS (2017) Paediatric palliative care and intellectual disability—a unique context. J Appl Res Intellect Disabil 30:1111–1124PubMed
43.
Edelstein H, Schippke J, Sheffe S, Kingsnorth S (2017) Children with medical complexity: a scoping review of interventions to support caregiver stress. Child Care Health Dev 43(3):323–333PubMed
44.
Egilson ST (2011) Parent perspectives of therapy services for their children with physical disabilities. Scand J Caring Sci 25:277–284PubMed
45.
Elias ER, Murphy NA (2012) Home care of children and youth with complex health care needs and technology dependencies. Pediatrics 129:996–1005PubMed
46.
Farasat H, Hewitt-Taylor J (2007) Learning to support children with complex and continuing health needs and their families. J Spec Pediatr Nurs 12:72–83PubMed
47.
Fraser LK, Parslow RC, McKinney PA, Miller M, Aldridge JM, Hain R et al (2012) A cohort study of children and young people with progressive neuromuscular disorders: clinical and demographic profiles and changing patterns of referral for palliative care. Palliat Med 26(7):924–929PubMed
48.
Friedman SL, Kalichman MA (2014) Out-of-home placement for children and adolescents with disabilities. Pediatrics 134:836–846PubMed
49.
Garg P, Haynes N, De Lima J, Collins JJ (2017) Profile of children with developmental disabilities attending a complex pain clinic of a children’s hospital in Australia. J Paediatr Child Health 53(12):1186–1191PubMed
50.
Geere JL, Gona J, Omondi FO, Kifalu MK, Newton CR, Hartley S (2013) Caring for children with physical disability in Kenya: potential links between caregiving and carers’ physical health. Child Care Health Dev 39:381–392PubMedPubMedCentral
51.
Glader L, Plews-Ogan J, Agrawal R (2016) Children with medical complexity: creating a framework for care based on the International Classification of Functioning, Disability and Health. Dev Med Child Neurol 258:1116–1123
52.
Gleeson H, Turner G (2012) Transition to adult services. Arch Dis Child Educ Pract Ed 97:86–92PubMed
53.
Goddard L, Davidson PM, Daly J, Mackey S (2008) People with an intellectual disability in the discourse of chronic and complex conditions: an invisible group? Aust Health Rev 32:405–414PubMed
54.
Goldson E, Louch G, Washington K, Scheu H (2006) Guidelines for the care of the child with special health care needs. Adv Pediatr Infect Dis 53:165–182
55.
Goudie A, Narcisse MR, Hall DE, Kuo DZ (2014) Financial and psychological stressors associated with caring for children with disability. Fam Syst Health 32:280–290PubMedPubMedCentral
56.
Graham RJ, Robinson WM (2005) Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities. J Dev Behav Pediatr 26:361–365PubMed
57.
Gravdal Kvarme L, Albertini-Fruh E, Brekke I, Gardsjord R, Halvorsrud L, Liden H (2016) On duty all the time: health and quality of life among immigrant parents caring for a child with complex health needs. J Clin Nurs 25:362–371PubMed
58.
Green SE (2007) ‘We’re tired, not sad’: benefits and burdens of mothering a child with a disability. Soc Sci Med 64:150–163PubMed
59.
Heath G, Farre A, Shaw K (2017) Review article: parenting a child with chronic illness as they transition into adulthood: a systematic review and thematic synthesis of parents’ experiences. Patient Educ Couns 00(1):76–92
60.
Hewitt-Taylor J (2005) Caring for children with complex and continuing health needs. Nurs Stand 19:41–47
61.
Hewitt-Taylor J, Farasat H (2006) Learning to support children with complex needs in their homes. Br J Community Nurs 11:209–213PubMed
62.
Hilton C (2017) An exploration of the cognitive, physical and psychosocial development of children with Apert syndrome. IJDDE 64:198–210
63.
Howard L, Hunt K, Slade M, O'Keane V, Senevirante T, Leese M, Thornicroft G (2007) Assessing the needs of pregnant women and mothers with severe mental illness: the psychometric properties of the Camberwell Assessment of Need - Mothers (CAN-M). Int J Methods Psychiatr Res 16:177–185PubMed
64.
65.
Isa SN, Aziz AA, Rahman AA, Ibrahim MI, Ibrahim WP, Mohamad N et al (2013) The impact of children with disabilities on parent health-related quality of life and family functioning in Kelantan and its associated factors. J Dev Behav Pediatr 34:262–268PubMed
66.
Janvier A, Barrington K, Farlow B (2014) Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. Semin Perinatol 38:38–46PubMed
67.
Jordan AL, Eccleston C, Osborn M (2007) Being a parent of the adolescent with complex chronic pain: an interpretative phenomenological analysis. Eur J Pain 11:49–56PubMed
68.
Juhlman AF (2010) Take the little steps: providing complex care. Pediatr Ann 39:248–253
69.
Kirk S, Glendinning C (2004) Developing services to support parents caring for a technology-dependent child at home. Child Care Health Dev 30:209–218PubMed
70.
Knafl KA, Deatrick JA (1986) How families manage chronic conditions: an analysis of the concept of normalization. Res Nurs Health 9(3):215–222PubMed
71.
Knapp M, Perkins M, Beecham J, Dhanasiri S, Rustin C (2008) Transition pathways for young people with complex disabilities: exploring the economic consequences. Child Care Health Dev 34:512–520PubMed
72.
Kruger BJ, Toker KH, Radjenovic D, Comeaux JM, Macha K (2009) School nursing for children with special needs: does number of schools make a difference? J Sch Health 79:337–346PubMed
73.
Kuo DZ, Melguizo-Castro M, Goudie A, Nick TG, Robbins JM, Casey PH (2015) Variation in child health care utilization by medical complexity. Matern Child Health J 19:40–48PubMedPubMedCentral
74.
Kvarme LG, Früh EA, Lidèn H (2017) How do immigrant parents of children with complex health needs manage to cope in their daily lives? Child Fam Soc Work 22(4):1399–1406
75.
Lerret SM, Weiss ME, Stendahl GL, Chapman S, Menendez J, Williams L, Nadler ML, Neighbors K, Amsden K, Cao Y, Nugent M, Alonso EM, Simpson P (2015) Pediatric solid organ transplant recipients: transition to home and chronic illness care. Pediatr Transplant 19:118–129PubMed
76.
Lerret SM, Johnson NL, Haglund KA (2017) Parents’ perspectives on caring for children after solid organ transplant. J Spec Pediatr Nurs 22:1–8
77.
Lindeke LL, Leonard BJ, Presler B, Garwick A (2002) Family-centered care coordination for children with special needs across multiple settings. J Pediatr Health Care 16:290–297PubMed
78.
Lindsay S, Hoffman A (2015) A complex transition: lessons learned as three young adults with complex care needs transition from an inpatient paediatric hospital to adult community residences. Child Care Health Dev 41:397–407PubMed
79.
Liptak GS, El Samra A (2010) Optimizing health care for children with spina bifida. Dev Disabil Res Rev 16:66–75PubMed
80.
MacDonald HL, Gibson CH (2010) Parenting children requiring complex care at home: re-visiting normalisation and stigma. J Nurs Healthc Chronic Illn 2:241–250
81.
Mahat G, Scoloveno MA, Donnelly CB (2007) Written educational materials for families of chronically ill children. J Am Acad Nurse Pract 19:471–476PubMed
82.
Mandic CG, Johaningsmeir S, Corden TE, Earle A, Acevedo-Garcia D, Gordon JB (2017) Impact of caring for children with medical complexity on parents’ employment and time. Community Work Fam 20(4):444–458
83.
Mazaheri MM, Rae-Seebach RD, Preston HE, Schmidt M, Kountz-Edwards S, Field N, Cassidy S, Packman W (2013) The impact of Prader-Willi syndrome on the family’s quality of life and caregiving, and the unaffected siblings’ psychosocial adjustment. J Intellect Disabil Res 57:861–873PubMed
84.
McCann D (2015) Does continuous partial attention offer a new understanding of the required vigilance and associated stress for parents of children with complex needs? Child Care Health Dev 41:1238–1241PubMed
85.
McDonald RL, Surtees R, Wirz S (2007) A comparative exploration of the thoughts of parents and therapists regarding seating equipment for children with multiple and complex needs. Disabil Rehabil Assist Technol 2:319–325PubMed
86.
Nandi D, Rossano J, Wang Y, Jerrell J (2017) Risk factors for heart failure and its costs among children with complex congenital heart disease in a Medicaid cohort. Pediatr Cardiol 38(8):1672–1679PubMed
87.
Nicholl H (2015) ‘Going between worlds’: travelling with children with complex needs. J Child Health Care 19:293–303PubMed
88.
Nicholl HM, Begley CM (2012) Explicating caregiving by mothers of children with complex needs in Ireland: a phenomenological study. J Pediatr Nurs 27:642–651PubMed
89.
Noritz G (2016) Once again, complex care leads the way. J Pediatr Rehabil Med 9:3–4PubMed
90.
Nzirawa T (2015) Caring for children with complex needs. Nurs Manag UK 22:32–38
91.
Okumura MJ, Van Cleave J, Gnanasekaran S, Houtrow A (2009) Understanding factors associated with work loss for families caring for CSHCN. Pediatrics 124(Suppl 4):S392–S398PubMed
92.
Pelentsov LJ, Laws TA, Esterman AJ (2015) The supportive care needs of parents caring for a child with a rare disease: a scoping review. Disabil Health J 8:475–491PubMed
93.
Peter E, Spalding K, Kenny N, Conrad P, Mckeever P, Macfarlane A (2007) Neither seen nor heard: children and homecare policy in Canada. Soc Sci Med 64:1624–1635PubMed
94.
Potera C (2014) A collaborative effort connects Delaware health system with local school nurses. Am J Nurs 114:17PubMed
95.
Quinn C, Bailey ME (2011) Caring for children and families in the community: experiences of Irish palliative care clinical nurse specialists. Int J Palliat Nurs 17:561–567PubMed
96.
Rafferty KA, Sullivan SL (2017) ‘You know the medicine, I know my kid’: how parents advocate for their children living with complex chronic conditions. Health Commun 32(9):1151–1160PubMed
97.
Rafferty A, Martin J, Strachan D, Raine C (2013) Cochlear implantation in children with complex needs—outcomes. Cochlear Implants Int 14:61–66PubMed
98.
Raina P, O'Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, Swinton M, Zhu B, Wood E (2005) The health and well-being of caregivers of children with cerebral palsy. Pediatrics 115:e626–e636PubMed
99.
Ranade-Kharkar P, Weir C, Norlin C, Collins SA, Scarton LA, Baker GB, Borbolla D, Taliercio V, del Fiol G (2017) Information needs of physicians, care coordinators, and families to support care coordination of children and youth with special health care needs (CYSHCN). J Am Med Inform Assoc 24:933–941PubMed
100.
Randall DC (2017) Two futures: financial and practical realities for parents of living with a life limited child. Compr Child Adolesc Nurs 40:257–267PubMed
101.
Reeves S, Perrier L, Goldman J, Freeth D, Zwarenstein M (2013) Interprofessional education: effects on professional practice and health care outcomes (update). Cochrane Database Syst Rev 28(3):CD002213
102.
Rehm RS (2003) Legal, financial, and ethical ambiguities for Mexican American families: caring for children with chronic conditions. Qual Health Res 13:689–702PubMed
103.
Reichman NE, Corman H, Noonan K (2008) Impact of child disability on the family. Matern Child Health J 12:679–683PubMed
104.
Rentz AM, Skalicky AM, Pashos CL, Liu Z, Magestro M, Pelletier CL et al (2015) Caring for children with tuberous sclerosis complex: what is the physical and mental health impact on caregivers? J Child Neurol 30:1574–1581PubMed
105.
Reuben CA, Pastor PN (2013) The effect of special health care needs and health status on school functioning. Disabil Health J 6:325–332PubMed
106.
Ricci MF, Andersen JC, Joffe AR, Watt MJ, Moez EK, Dinu IA, Garcia Guerra G, Ross DB, Rebeyka IM, Robertson CMT (2015) Chronic neuromotor disability after complex cardiac surgery in early life. Pediatrics 136:e922–e933PubMed
107.
Rienks S, Phillips J, McCrae J, Bender K, Brown S (2017) Complex health concerns among child welfare populations and the benefit of pediatric medical homes. Child Abuse Negl 65:212–225PubMed
108.
Robert R, Zhukovsky DS, Mauricio R et al (2012) Bereaved parents’ perspectives on pediatric palliative care. J Soc Work End Life Palliat Care 8:316–338PubMed
109.
Rodgers BL (ed) (2000) Concept analysis: an evolutionary view. Saunders, Philadelphia
110.
Royal College of Paediatrics and Child Health (2015) Standards for children and young people in emergency care settings: children and young people with complex medical needs. In: Royal College of Paediatrics and Child Health. RCPCH, London
111.
Samwell B (2012) From hospital to home: journey of a child with complex care needs. Nurs Child Young People 24:14–19PubMed
112.
Scal P, Ireland M (2005) Addressing transition to adult health care for adolescents with special health care needs. Pediatrics 115:1607–1612PubMed
113.
Schwab S, Pierce PM (1986) Assessment of clinical nursing practice in a rural decentralized case-management system. Public Health Nurs 3:111–119PubMed
114.
Seear M, Kapur A, Wensley D, Morrison K, Behroozi A (2016) The quality of life of home-ventilated children and their primary caregivers plus the associated social and economic burdens: a prospective study. Arch Dis Child 101:620–627PubMed
115.
Seltzer RR, Henderson CM, Boss RD (2016) Medical foster care: what happens when children with medical complexity cannot be cared for by their families? Pediatr Res 79(1–2):191–196PubMed
116.
Shulman ST (2010) Complex care is complicated! Pediatr Ann 39:183–184PubMed
117.
Sieben-Hein D, Steinmiller EA (2005) Working with complex care patients. J Pediatr Nurs 20:389–395PubMed
118.
Simon TD, Cawthon ML, Stanford S, Popalisky J, Lyons D, Woodcox P, Hood M, Chen AY, Mangione-Smith R, for the Center of Excellence on Quality of Care Measures for Children with Complex Needs (COE4CCN) Medical Complexity Working Group (2014) Pediatric medical complexity algorithm: a new method to stratify children by medical complexity. Pediatrics 133:e1647–e1654PubMedPubMedCentral
119.
Smith BB, Barbara DW, Hyder JA, Smith MM (2016) Anesthetic considerations for patients with Bardet-Biedl syndrome: a case series and review of the literature. Paediatr Anaesth 26:429–437PubMed
120.
Smith CH, Graham CA, Herbert AR (2017) Respite needs of families receiving palliative care. J Paediatr Child Health 53:173–179PubMed
121.
Spratling R (2015) Defining technology dependence in children and adolescents. West J Nurs Res 37:634–651PubMed
122.
Stans SE, Stevens JA, Beurskens AJ (2013) Interprofessional practice in primary care: development of a tailored process model. J Multidiscip Healthc 6:139–147PubMedPubMedCentral
123.
Stephenson E, DeLongis A, Steele R, Cadell S, Andrews GS, Siden H (2017) Siblings of children with a complex chronic health condition: maternal posttraumatic growth as a predictor of changes in child behavior problems. J Pediatr Psychol 42(1):104–113PubMed
124.
Suter E, Deutschlander S, Mickelson G et al (2012) Can interprofessional collaboration provide health human resources solutions? A knowledge synthesis. J Interprof Care 26(4):261–268PubMed
125.
Thomas M, Hunt A, Hurley M, Robertson S, Carter B (2011) Time-use diaries are acceptable to parents with a disabled preschool child and are helpful in understanding families’ daily lives. Child Care Health Dev 37:168–174PubMed
126.
Thurgate C, Warner H (2005) Living with disability: part 1. Paediatr Nurs 17:37–44PubMed
127.
Thurston S, Paul L, Loney P, Ye C, Wong M, Browne G (2011) Associations and costs of parental symptoms of psychiatric distress in a multi-diagnosis group of children with special needs. J Intellect Disabil Res 55:263–280PubMed
128.
Toly VB, Blanchette JE, Sikorski S, Musil CM, Al-Hamed A (2017) Maternal perspectives of well siblings’ adjustment to family life with a technology-dependent child. J Fam Nurs 23:392–417PubMed
129.
Van Cleave J (2015) Children with special health care needs: with population-based data, better individual care plans. Pediatrics 135:e1040–e1041PubMed
130.
Van Nimwegen KJ, Kievit W, Van Der Wilt GJ, Schieving JH, Willemsen MA, Donders AR et al (2016) Parental quality of life in complex paediatric neurologic disorders of unknown aetiology. Eur J Paediatr Neurol 20:723–731PubMed
131.
Verberne LM, Kars MC, Schouten-Van Meeteren AY, Bosman DK, Colenbrander DA, Grootenhuis MA et al (2017) Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study. Eur J Pediatr 176:343–354PubMedPubMedCentral
132.
Wakil N, Fitzpatrick EM, Olds J, Schramm D, Whittingham J (2014) Long-term outcome after cochlear implantation in children with additional developmental disabilities. Int J Audiol 53:587–594PubMed
133.
Ward C, Glass N, Ford R (2015) Care in the home for seriously ill children with complex needs: a narrative literature review. J Child Health Care 19:524–531PubMed
134.
Weaver K, Mitcham C (2008) Nursing concept analysis in North America: state of the art. Nurs Philos 9(3):180–194PubMed
135.
Wei X, YU JW (2012) The concurrent and longitudinal effects of child disability types and health on family experiences. Matern Child Health J 6:100–108
136.
Weng HJ, Niu DM, Turale S, Tsao LI, Shih FJ, Yamamoto-Mitani N, Chang CC, Shih FJ (2012) Family caregiver distress with children having rare genetic disorders: a qualitative study involving Russell-Silver syndrome in Taiwan. J Clin Nurs 21:160–169PubMed
137.
Whiting M (2012) What it means to be the parent of a child with a disability or complex health need. Nurs Child Young People 26:26–29
138.
Whiting M (2013) Impact, meaning and need for help and support: the experience of parents caring for children with disabilities, life-limiting/life-threatening illness or technology dependence. J Child Health Care 17:92–108PubMed
139.
Whiting M (2014) What it means to be the parent of a child with a disability or complex health need. Nurs Child Young People 26:26–29PubMed
140.
Widger K, Picot C (2008) Parents’ perceptions of the quality of pediatric and perinatal end-of-life care. Pediatr Nurs 34:53–58PubMed
141.
Willis E (2007) Symptom care flowcharts: a case study. Paediatr Nurs 19:14–17PubMed
142.
Woodgate RL, Edwards M, Ripat J (2012) How families of children with complex care needs participate in everyday life. Soc Sci Med 75:1912–1920PubMed
143.
Woodgate RL, Edwards M, Ripat JD, Borton B, Rempel G (2015) Intense parenting: a qualitative study detailing the experiences of parenting children with complex care needs. BMC Pediatr 15:1–15
144.
Woodgate RL, Edwards M, Ripat JD, Rempel G, Johnson SF (2016) Siblings of children with complex care needs: their perspectives and experiences of participating in everyday life. Child Care Health Dev 42:504–512PubMed
145.
Woodgate RL, Zurba M, Edwards M, Ripat J, Rempel G (2017) The embodied spaces of children with complex care needs: effects on the social realities and power negotiations of families. Health Place 46:6–12PubMed
146.
World Health Organisation (2012) Congenital anomalies. World Health Organisation, Geneva
147.
148.
Young NL, Gilbert TK, Mccormick A, Ayling-Campos A, Boydell K, Law M et al (2007) Youth and young adults with cerebral palsy: their use of physician and hospital services. Arch Phys Med Rehabil 88:696–702PubMed
149.
Zajicek-Farber ML, Lotrecchiano GR, Long TM, Farber JM (2015) Parental perceptions of family centered care in medical homes of children with neurodevelopmental disabilities. Matern Child Health J 19:1744–1755PubMed
150.
Ziviani J, Darlington Y, Feeney R, Rodger S, Watter P (2014) Early intervention services of children with physical disabilities: complexity of child and family needs. Aust Occup Ther J 61:67–75PubMed
Metadata
Title
Children’s complex care needs: a systematic concept analysis of multidisciplinary language
Authors
Maria Brenner
Claire Kidston
Carol Hilliard
Imelda Coyne
Jessica Eustace-Cook
Carmel Doyle
Thelma Begley
Michael J. Barrett
Publication date
01-11-2018
Publisher
Springer Berlin Heidelberg
Published in
European Journal of Pediatrics / Issue 11/2018
Print ISSN: 0340-6199
Electronic ISSN: 1432-1076
DOI
https://doi.org/10.1007/s00431-018-3216-9

Other articles of this Issue 11/2018

European Journal of Pediatrics 11/2018 Go to the issue

Original Article

Pulmonary involvement in Niemann-Pick C type 1

Original Article

Towards an individual screening strategy for first-degree relatives of celiac patients

Original Article

Day case paediatric tonsillectomy: a quality improvement project

Original Article

Body mass index at the presentation of premature adrenarche is associated with components of metabolic syndrome at puberty

Original Article

Evolution of body mass index in children with type 1 diabetes mellitus

Original Article

Neonatal screening in the Czech Republic: increased prevalence of selected diseases in low birthweight neonates