Explore our research

  • Illness, complex health care needs and disability


The Illness, Complex Health Care Needs and Disability Research Group focuses on exploring and enhancing service delivery through working with children, their families and those who work with them in order to identify how their specific needs can be met and their resilience promoted

Our research has focused particularly on how the lives of children with complex health care and their families can be changed and challenged by the services they are either able to /unable to access. We are interested in how children’s lives can be disrupted by illness and how we can best work with families to mitigate these effects.

Another area of our work addresses children who have disabilities and, in particular, children who use wheelchairs, their opportunities to engage in sport and leisure with their peers and how they gain skills and confidence as children who use wheelchairs.

We also have undertaken service evaluation of mental health services, in schools and children’s centres.

We have undertaken work for the Department of Health closely with Alder Hey Children’s NHS Foundation Trust and the Children’s Nursing Research Unit as well as with colleagues in many other institutions and especially with colleagues within charitable organisations such as WellChild, Rainbow Children’s Charity, CLIC Sargent and The Cheetahs.

Expertise and Subject Areas

We bring a particular methodological expertise to the ways in which we engage with children and their families. We have a long-established reputation for excellent practice when engaging with service users and we draw on a range of sensitive and innovative arts-based methods to ensure that children and young people have the opportunity to contribute their insights, experiences and ideas to our research.

Publications and Outputs


  • Larkins, C., Thomas, N., Carter, B., Farrelly, N.J., Judd, D.B & Lloyd, J. (2015) Intergenerational support for children’s protagonism: methodological moves towards critical children rights research framed from below. The International Journal of Children's Rights, 23: 332-364 . ISSN 0927-5568
  • Sanders C., Carter B. & Lwin R. (2015) Young women with a disorder of sex development: learning to share information with health professionals, friends and intimate partners about bodily differences and infertility. Journal of Advanced Nursing 00(0), 000–000. doi: 10.1111/jan.12661
  • Doyle, S. Carter, B., Sanders, C., Bray, L. (2015) Bladder Augmentation in Children and Young Adults: a review of published literature. International Journal of Urological Nursing. doi: 10.1111/ijun.12079
  • Sanders, C. & Carter, B. (2015) A qualitative study of communication between young women with a disorders of sex development and health professionals. Advances in Nursing. Article ID 653624, 7 pages, 2015. doi:10.1155/2015/653624
  • Carter, B., Dickinson, A., Ford, K., Bray, L., Arnott, J., Water, T. Sanson, K. & Tichanow,C. (2014) O-155 "Getting On" and "Fitting In": Children’s Experiences Of Growing Up With Chronic Illness In England, Australia And New Zealand. Archives of Disease in Childhood.99:Suppl 2 A83 doi:10.1136/archdischild-2014-307384.222
  • Carter, B., Ford, K., Dickinson, A., Bray, L., Water, T. Arnott, J., Sanson, K. & Tichanow,C. (2014) PO-0954 Click! Engaging Children In Research About Their Lives: Experiences Of Using Photo-elicitation From England, Australia And New Zealand. Archives of Disease in Childhood.99:Suppl 2 A562 doi:10.1136/archdischild-2014-307384.1574
  • McCurtin, A., & Carter, B. (2014) We don’t have recipes; we just have loads of ingredients’. Explanations of evidence and clinical decision-making by speech & language therapists" Journal of Evaluation in Clinical Practice (Special 20th Anniversary Edition). Dec 26. doi: 10.1111/jep.12285. [Epub ahead of print]
  • Coad, J., Gibson, F., Horstman, M., Milnes, L., Randall, D., Carter, B. (2014) Be my guest! Challenges and practical solutions of undertaking interviews in the home with children. Journal of Child Health. Epub ahead of print, May 8th . DOI: 10.1177/1367493514527653 IF: 0.970; Citations 1
  • Carter, B., Grey, J., McWilliams, E., Clair, Z., Blake, K., & Byatt, (2014) “Just kids playing sport (in a chair)”: experiences of children, families and stakeholders attending a wheelchair sports club. Disability and Sport. 29(6): 938-952.
  • Carter, B., Hunt, A., Edwards, M. (2014) ‘Being a presence’: the ways in which Family Support Workers encompass, embrace, befriend, accompany and endure with families of life-limited children. Journal of Child Health Care. SSN: 1741-2889, PMID: 24459101
  • Thomas, M., Carter, B., Hunt, A. (2013) A comparison of parental sleep patterns in families with and without a young disabled child. Developmental Medicine & Child Neurology. 55,S2, PS15.4: 25.
  • Flynn, A., Carter, B., Bray, L., Donne, A. (2013) Parents' experiences and views of caring for a child with a tracheostomy: a literature review. International Journal of Pediatric Otorhinolaryngology. 77(10) 1630-1634.IF: 1.319; Citations 1

  • Carter,B., Jackson, D., Hayter, M. Nyamathi, A. (2012) Children out of place: vulnerability and risk in the countryside?" Contemporary Nurse. 42(2):
  • Carter, B., Coad, J., Goodenough, T., Anderson, C., Moore, A. J., Bray, L., Clinchant, A., Widdas, D. (2012) Home-based care for children with special health care needs: what works well in Community Children’s Nursing Services? Nursing Research. 61(4):260-8.
  • Sanders, C., Carter, B.,& Goodacre, L. (2012) Parents need to protect: Influences, risks and tensions for parents of pre-pubertal children born with ambiguous genitalia. Journal of Clinical Nursing. Jun 2. doi: 10.1111/j.1365-2702.2012.04109.x. [Epub ahead of print]
  • Bradley, S. & Carter, B. (2012) Reflections on the ethics of Internet newsgroup. International Journal of Nursing Studies. 49(5): 625-30 (ISSN 0020-7489)
  • Moore, A.J. & Carter, B. (2012) Appropriated landscapes: The placing of assistive technologies in the homes and lives of families with a child with complex healthcare needs. Environmental & Architectural Phenomenology. 23(2): 11-14.ISSN 1083-9194
  • Carter, B. (2012) Developing and implementing an appreciative ‘Quality of Care’ approach to child neglect practice. Child Abuse Review. 21(81-98).
  • Carter, B. & Thomas, M. (2011). Key Working for Families with Young Disabled Children. Nursing Research and Practice. Article ID 397258, doi:10.1155/2011/397258
  • Sanders, C., Carter. B. & Goodacre, L. (2011) Searching for harmony. Parents’ narratives about their child’s genital ambiguity and reconstructive genital surgeries in childhood. Journal of Advanced Nursing. Published online early March 2011. doi: 10.1111/j.1365-2648.2011.05617.x
  • Thomas, M. Carter, B., Robertson, S., Hunt, A., Hurley, M. (2010) Time-use diaries are acceptable to parents with a disabled preschool child and are helpful in understanding families’ daily lives. Child: Care, Health & Development. Published Online early September 2010 doi:10.1111/j.1365-2214.2010.01156.x
  • Vallido, T., Jackson, D., Wilkes, L., & Carter, B. Disrupted mothering in illness: a narrative synthesis of qualitative research. Journal of Advanced Nursing. 66(7). Article first published online 21 May ISSN: 0309-2402
  • Midson, R. & Carter, B. (2010) Addressing end of life care issues in a tertiary treatment centre: lessons learned from surveying parents’ experiences. Journal of Child Health Care. 14(1): (Print ISSN: 0962-1067; Online ISSN: 1365-2702)
  • Marshall, M., Carter, B. & Brotherton, A. (2009) Living with Type 1 diabetes: perceptions of children and their parents. Journal of Clinical Nursing. 18(12):1703-1710 (Published Online: 15 May 2009) (ISSN: 09621067; Online ISSN: 13652702)
  • Carter, B. (2009) Tick box for child? The ethical positioning of children as vulnerable, researchers as barbarians and reviewers as overly cautious. International Journal of Nursing Studies. 46: 858-864. (ISSN 0020-7489)
  • Carter,B. (2009) Nursing amidst stories (and knowing what to do with them). Editorial. Journal of Clinical Nursing. 18, 477–4 (Commissioned) (ISSN: 09621067; Online ISSN: 13652702)
  • Carter, B. (2008) Commentary on Shields L, Pratt J & Hunter J (2006) Family centred care: a review of qualitative studies. Journal of Clinical Nursing 5, 1317–23. Journal of Clinical Nursing. 17(15): 2091-2093. (ISSN: 09621067; Online ISSN: 13652702)
  • Sanders, C., Carter, B. & Goodacre, L. (2008) Parents’ narratives about their experiences of their child's reconstructive genital surgeries for ambiguous genitalia. Journal of Clinical Nursing 17 (23), 3187-3195. (ISSN: 09621067; Online ISSN: 13652702)
  • Carter, B. (2008) ‘Good’ and ‘bad’ stories: decisive moments, ‘shock and awe’ and being moral. Journal of Clinical Nursing. 17, 1063–1070. (ISSN: 09621067; Online ISSN: 13652702)
  • Carter, B., Cummings, J. & Cooper, L.S. (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? Journal of Clinical Nursing.16: 527-539. (ISSN 0962-1067)
  • Carter, B. (2006/2007) Kicking Eeyore into touch: ‘Living-strong’, ‘nursing-strong’ and being appreciative and solution-focused. Contemporary Nurse. 23(2):181-188(Commissioned). (ISSN 1037-6178)
  • Carter, B., Bradley, S., Richardson, R., Sanders, R.,& Sutton, C.J. (2006) Appreciating what works: discovering and dreaming alongside people developing resilient services for young people requiring mental health services. Current Issues in Mental Health Nursing. 27(5): 575-594. (commissioned)
  • Carter, B. (2006) “One expertise among many” - working appreciatively to make miracles instead of finding problems: using Appreciative Inquiry as a way of reframing research. Journal of Research in Nursing. 11(1): 48-63.
  • Marshall, M., Carter, B. & Rose, K. (2006) Adolescents living with diabetes: Self-care and parental relationships. Journal of Diabetes Nursing. 10(1):
  • Carter, B. (2005) “They’ve got to be as good as mum and dad”: children with complex health care needs and their siblings’ perceptions of a Diana Community Nursing Service. Clinical Effectiveness in Nursing. 9(1-2)49-61
  • Fleming E, Carter, B. & Gillibrand, W. (2002) The transition of adolescents into the adult health care service: the diabetes specialist’s perception of adolescent needs. Diabetic Medicine, 19, (suppl.2) (Abstract), 97, P276.
  • Marshall, M., Fleming, E, Gillibrand, WP. & Carter, B. (2002) Adaptation and negotiation as a personal approach to care in paediatric diabetes specialist nursing practice: a critical review. Journal of Clinical Nursing. 11: 421-429.
  • Fleming, E., Carter, B., Gillibrand, W. (2002) The transition of adolescents’ with diabetes from the children’s health care service into the adult health care service: a review of the literature. Journal of Clinical Nursing. 11:560-567.
  • Carter, B. (2002) An Evaluation of a Children’s Drug Therapy Service. Journal of Substance Use. 7(4) 198-206.
  • Carter, B. (2002) Children’s participation in healthcare in the UK – gesture, rhetoric or real involvement? Bioethics Forum; 18(3/4): 29-35. (commissioned article)
  • Carter, B. (2000) Ways of working: Community children’s nursing and chronic illness. Journal of Child Health Care; 4(2): 66-72.


  • Carter, B. (2015) ‘If you see something, say something’: Reducing the incidence of deterioration in children Journal of Child Health Care. 19(2): 133-135.
  • Carter, B. (2014) Parenting a sick child: Challenge and resilience. Journal of Child Health Care 18(2):99-100. DOI: 10.1177/1367493514535332

  • Carter,B. (2012) Children’s well-being: priorities and considerations. Journal of Child Health Care. 16(2): 107-108
  • Ford, K., Tesch, L. & Carter, B. (2011) FUNdamentally important: humour and fun as caring and practice. Journal of Child Health Care. 15(4): 247-9
  • Dickinson, A. & Carter, B. 2011 A day at the beach or …..? Journal of Child Health Care. 14(4): 307-9.
  • Moore, A., Anderson, C., Carter, B., Coad, J. (2010) Appropriated landscapes: the intrusion of technology and equipment into the homes and lives of families with a child with complex needs. Journal of Child Health Care. 14(1): 3-5. (Print ISSN: 0962-1067; Online ISSN: 1365-2702)
  • Jackson, D. & Carter, B. (2009) Fear, failure, outrage and grief: the dissonance between public outrage and individual action? Journal of Child Health Care.13(1) 4-6. (Print ISSN: 0962-1067; Online ISSN: 1365-2702)
  • Carter, B. (2007) Bunny hops and creative thinking about getting youngsters active. Journal of Child Health Care 11, 266-268. (Print ISSN: 0962-1067; Online ISSN: 1365-2702)
  • Carter, B. (2004) If I have to say it again, I gonna flippin explode. Journal of Child Health Care. 8(3):178-179
  • Carter, B. (2003) Bernie……do you know what? Journal of Child Health Care. 7(3):
  • Carter, B, (2003) If you’ve gone busted a nurse will fix you. Journal of Child Health Care. 7(2):82-84.
  • Carter, B, (2002) It’s dead, it’s doesn’t work anymore…. but will it get better? Journal of Child Health Care. 6(4): 226-228
  • Carter, B. (2002) On ‘irafs and other amazing things…… Journal of Child Health Care. 6(2): 82-83.


  • Carter,B. and Dearmun,A.K. [Eds] (1995) Child Health Care Nursing: Concepts, Theory and Practice. Blackwell Science: Oxford.


  • Carter, B. (2011) Researching children and young people: exploring the ethical territory. Chapter 17, In: Brykczyńska, G. & Simons, J. Ethical and Philosophical Aspects of Nursing Children. Wiley-Blackwell, Oxford. pp201-219
  • Carter, B. Marshall, M. & Sanders, C. (2009) An Exquisite Knowing of Children. In: Locsin, R.C. & Purnell, M. Contemporary Process of Nursing: The (Un)Bearable Weight of Knowing Persons in Nursing? Springer Publishing, New York. 9780826125781
  • Carter, B. (2006) Working it out together: being solution-focused in the way we nurse with children and their families. In: McAllister, M. Solution Focused Nursing: Rethinking Practice. Palgrave Publishers. (Commissioned) 9781403946270
  • Bradley, S.K. & Carter, B. (2006) Internet newsgroups as a source of data for qualitative healthcare research: issues, challenges and the practicalities of exploring young people’s mental health accounts. In P. Liamputtong (Ed.) CyberResearchHealth Research in Cyberspace: Methodological, Practical and Personal Experiences of doing Health and Social Research Online. New York: Nova Science Publishers.
  • Carter,B. (1996) Paediatric Care. In: Skidmore, D. [Ed] Community Care. Arnold: London pp107-132

Events and News

Children’s Nursing Research Unit Conference 7th May 2013 at Alder Hey Children’s NHS Foundation Trust


Professor Bernie Carter: Professor of Children’s Nursing
Bernie has been based at the University of Central Lancashire since 2000. Bernie is Professor of Children’s Nursing at the University of Central Lancashire and Director of the Children’s Nursing Research Unit (CNRU) at Alder Hey Children’s NHS Foundation Trust. She is a Fellow of the Royal College of Nursing. She is Visiting Professor at Edge Hill University and Clinical Professor at the University of Tasmania.

Mandy Dunbar, Senior Lecturer in Physiotherapy, School of Sport, Tourism and The Outdoors
Mandy qualified as a Physiotherapist in 1997 at Manchester School of Physiotherapy and worked in the NHS primarily with adults with complex neurological problems.

She is clinical placement co-ordinator for the Physiotherapy programme and works across the north west with clinical and higher education partners to deliver high quality clinical education. She is interested in children’s acquisition of skills and confidence in using their wheelchairs.



Professor Nigel Thomas



Additional Information

For further information contact:

Prof Bernie Carter
School of Health
University of Central Lancashire
Preston PR1 2HE

Related Research Groups

Key links to:

Related Projects


  • Thomas, N., Carter, B., Larkins, C., Judd, D. & Lloyd,J. Disabled children and young people’s experiences of low income and the impact on children’s rights. Office of Children’s Commissioner for England.
  • Carter, B., Sanders, C., Bray, L. & Scope. Implementing & Evaluating the Benefits to Alder Hey’s parents of the Scope Face 2 Face Scheme.
  • Bray, L., Snodin, J., McArthur, E., Traynor, H., Carter, B., Twigg.E. An exploration of clinically holding children and young people for procedures or interventions within an acute children’s hospital. Children’s Research Fund.
  • Gladstone, M., Rekha, M., Kumar, R. Carter, B., Montague,S. HIDE Study (Hemiplegia and Vision). Alder Hey.

Selected completed projects:

  • Carter,B. Grey, J., Blake, K. & Byatt, R. Wheelchair sports for disabled and able bodied children: assessing the impact of the ‘The Cheetahs’ initiative. Internship application. Successful. 11.
  • Carter, B., Cummings, J. & Anderson, C. Scoping and Mapping Community Children’s Nursing Services (CCNS) and skills and training needs for services caring for Children / Young people requiring Long Term Ventilation (LTV). Department of Health. 
  • Carter, B., Hunt, A., Edwards, M. The Rainbow Trust: Children’s, Families’ and Staff Perceptions Study. The Rainbow Trust.
  • Carter, B. & Gibbon, C. Evaluating the Diploma in Society, Health & Development: young people’s perceptions of their learning & development at Alder Hey. July 2009 Alder Hey Children’s NHS Foundation Trust £15,000. 
  • Carter, B., Hunt, A., Sanders, C., Bray, L., van Miert, C. (2009) WellChild Nurses: their role, practice and ways of working with children, families and other stakeholders. WellChild.
  • Carter, B. Child Neglect: developing appreciative ways of working to reduce neglect and improve care in Blackburn with Darwen. Blackburn with Darwen.
  • Sanderson, L. & Carter, B. Child and Family Friendly Hospital Services: Child satisfaction research. In development with staff at Alder Hey.
  • Me and My School: An appreciative exploration of child well being, mental health and inclusion. In development with staff at Blackburn with Darwen. Blackburn with Darwen.
  • Coad, J. and Carter, B. An appreciative evaluation of the CLIC Sergeant participation strategy for school aged children with cancer. CLIC Sargent. In collaboration with UWE.
  • Coad, J. and Carter,B. Community Children’s Nursing in England: A extension study (Phase II) focusing on the views of children and their families on community children’s nurses and services they receive. Department of Health. In collaboration with the University of West of England.
  • Carter, B., Moore, D., & Hunt, A. Prime Minister’s Commission on the Future of Nursing: Clinician’s (Children’s Nursing/Practitioner) Event. October 2009. East Midlands Strategic Health Authority.
  • Carter, B. & Coad, J. Community Children’s Nursing in England: An appreciative review. Department of Health.
  • Carter, B. Parent Participation in Health, Social Care and Education in Cumbria. Cumbria Social Services.
  • Carter, B. An Appreciative Evaluative Audit of Key Aspects of the ‘Blackpool Early Support New Referral Project’.
  • Carter, B. et al. Persistence and Resistance in worlds made uncertain by CFS/ME: parents’ narratives of encounters with health care professionals. Dept of Nursing, UCLan Fund.
  • Carter, B. Mental Health Services for 15-18yr olds in Lancaster and the South Lakes. Morecambe Bay PCT.
  • Carter, B. Appreciating the Best: Multi-Agency Working Practice Project. Cumbria and Lancashire Workforce Development Confederation.
  • Carter, B. A research consultation exercise to facilitate the identification of potential outcomes, evaluation strategies and research projects for Lancaster Sure Start. Lancaster North Sure Start.
  • Carter, B. Children’s and their siblings’ perceptions of the Diana Children’s Nursing Team. Research commissioned by Salford Primary Care Trust.
  • Carter, B. Evaluation of the Children’s Drug Therapy Service in the Bay Community NHS Trust. Research commissioned and funded by Bay Community NHS Trust to evaluate an innovative Department of Health funded project.
  • Carter, B. & Fleming, E. Transition of young people with diabetes from child health services to adult health services.
  • Carter, B. Children’s Community Nursing in Salford: meeting the needs of children and their families. Research commissioned by Salford Community Health Care NHS Trust
  • Carter, B. Caring for Children with Chronic Illness in the Community: the Skills used by Children’s Community Nurses. Research funded by Sims Portex/ABPN Scholarship.
  • Carter, B. Consumer satisfaction of Shared Care: diabetic users’ perspectives. Research commissioned by Salford Health Authority.
  • Carter, B. Evaluation of the Role of the Primary Care Support Worker. Research commissioned by Sefton Health Authority.