Chapter 1: Involving children, young people and families in care and care decisions
These articles will help you to explore some key concepts of child and family involvement in care and decision-making:
Kelly, M., Jones, S., Wilson, V. and Lewis, P. (2012) ‘How children’s rights are constructed in family-centred care: A review of the literature’, Journal of Child Health Care,16 (2):190–205.
Lipstein, E.A., Brinkman, W.B. and Britto, M.T. (2012) ‘What is known about parents’ treatment decisions? A narrative review of pediatric decision making’, Medical Decision Making, 32 (2): 246–258.
Hagvall, M., Ehnfors, M. and Anderzen-Carlsson, A. (2016) ‘Experiences of parenting a child with medical complexity in need of acute hospital care’, Journal of Child Health Care, 20 (1):68–76.
Tinderholt Myrhaug, H., Jahnson, R. and Østensjø, S. (2014) ‘Family-centred practices in the provision of interventions and services in primary health care: a survey of parents of preschool children with cerebral palsy’, Journal of Child Health Care, 20 (1):109–119.
Coyne, I., Murphy, M., Costello, T., O’Neill, C. and Donnellan, C. (2013) ‘A survey of nurses’ practices and perceptions of family-centered care in Ireland’, Journal of Family Nursing, 19 (4):469–488.
Chapter 2: Effective communication with children and young people
A quote from this article ‘My one big wish is that nurses and doctors would explain things better to children’ (Child, 10 years) – the article then explores children’s views on varying aspects of being in hospital, including the communication between doctors and nurses:
Coyne, I. and Kirwan, L. (2012) ‘Ascertaining children’s wishes and feelings about hospital life’, Journal of Child Health Care, 16 (3): 293–304 .
This article explores some of the communication challenges faced by both nurses and parents in the Paediatric Intensive Care Unit and identifies some important similarities amongst parents and professionals. From this, a model to guide nurses in their communication is proposed:
Carnevale, F.A., Farrell, C., Cremer, R. et al. (2016) ‘Communication in pediatric critical care: a proposal for an evidence-informed framework’, Journal of Child Health Care, 20 (1): 27–36.
Communication in palliative and end-of-life settings is recognised as one of the most difficult aspects of nursing care. Parents value the presence of nurses, but professionals new to this field of children’s nursing often struggle to communicate effectively. This article identifies some of the key aspects of communication in this setting:
Hendricks-Ferguson, V.L., Sawin, K.J., Montgomery, K. et al. (2015) ‘Novice nurses’ experiences with palliative and end-of-life communication’, Journal of Pediatric Oncology Nursing, 32 (4): 240–252.
The use of a website to communicate with parents is explored and evaluated in this article, demonstrating that there is value in using online methods to maintain communication with parents:
Sigurdardottir, A.O., Svavarsdottir, E.K. and Rayens, M.K. (2014) ‘The impact of a web-based educational and support intervention on parents’ perception of their children’s cancer quality of life: an exploratory study’, Journal of Pediatric Oncology Nursing, 31 (3): 154–165.
Chapter 3: Assessment and management of pain in children and young people
This study explored children’s experience of pain and the non-pharmacological strategies used to manage pain after tonsillectomy. Six children (7–18 years) and their parents (4 mothers; 2 fathers) were interviewed on the day after surgery. Children rated their ‘worst pain’ during the past 24 hours between 6 and 10 (visual analogue scale, 0–10). The non-pharmacological strategies used most frequently to manage pain were thermal regulation) and distraction:
Idvall, E., Holm, C. and Runeson, I. (2005) ‘Pain experiences and non-pharmacological strategies for pain management after tonsillectomy: a qualitative interview study of children and parents’, Journal of Child Health Care, 9 (3): 196–207.
Children have a right to have their pain managed effectively. Yet, despite the evidence to guide practice being readily available there is evidence that children are experiencing unrelieved pain in children. This has harmful consequences, with no benefits. This paper explores the reasons for this from an ethical point of view arguing that there is a need for nurses to engage in authentic relationships with children who are experiencing pain, and to use evidence-based practices to manage that pain:
Olmstead, D.L., Scott, S.D. and Austin, W.J. (2010) ‘Unresolved pain in children: a relational ethics perspective’, Nursing Ethics, 17 (6): 695–704.
This paper describes an observational study which investigated how nurses (n=13) managed children’s postoperative pain on one ward at a hospital in the English Midlands. The nurses were good at giving analgesic drugs but other nursing care related to pain management – e.g. pain asessment – was not always undertaken. Non-drug methods of pain-relief were rarely used:
Twycross, A. (2002) ‘Managing pain in children: an observational study’, NT Research, 7 (3): 164-178.
This paper presents the results of a rapid review of the literature exploring children’s cancer-related pain. Despite advances in pain management techniques, children with cancer regularly describe pain as the most prevalent symptom throughout the cancer trajectory. The source of pain is usually treatment side effects or painful procedures. Parents find dealing with their child’s pain distressing and demanding and may hold misconceptions about pain management:
Twycross, A., Parker, R., Williams, A. and Gibson, F. (2015a) ‘Cancer-related pain and pain management: sources, prevalence and the experiences of children and parents’, Journal of Paediatric Oncology Nursing, 32 (6): 369–384.
This paper describes a study undertaken in one hospital in South West London exploring parents’ (n=108) attitudes towards children’s pain and the use of analgesic drugs. Parents completed two questionnaires. The results of the study indicated that most parents had a good understanging of how children expressed pain but a substantial number held misconceptions in this context and about analgesic drugs:
Twycross, A., Williams, A., Bolland, R. and Sunderland, R. (2015b) ‘Parents’ attitudes towards children’s pain and analgesic drugs’, Journal of Child Health Care, 19 (3): 402–411.
Chapter 4: Medication: management, administration and compliance
Mothers of young children are more receptive to concerns regarding appropriate antibiotic use:
Roberts, R.M., Albert, A.P., Johnson, D.D. and Hicks, L.A. (2015) ‘Can improving knowledge of antibiotic-associated adverse drug events reduce parent and patient demand for antibiotics?’, Health Services Research and Managerial Epidemiology, 1–5.
Inappropriate prescription of antibiotics:
Marc, C., Vrignaud, B., Levieux, K., et al. (2016) ‘Inappropriate prescription of antibiotics in pediatric practice: analysis of the prescriptions in primary care’, Journal of Child Health Care, 20 (4): 530–536.
Parental attitudes to children’s pain and analgesic drugs:
Twycross, A.M. Williams, A.M., Bolland, R.E. and Sutherland, R. (2015) ‘Parental attitudes to children’s pain and analgesic drugs in the United Kingdom’ Journal of Child Health Care, 19 (3): 402–411.
Chapter 5: Interprofessional working with children and young people
This article explores the experiences of 16 occupational therapy students during a practice learning placement on an interprofessional ward. It identifies the importance of teamworking, development of interpersonal skills and recognition of the importance of other practitioners’ roles in the clinical setting. Although the students are working in the area of older people’s nursing, the core knowledge and skills they develop are transferrable across the nursing profession:
Mackenzie, A., Craik, C., Tempest, S. et al. (2007) ‘Interprofessional learning in practice: the student experience’, British Journal of Occupational Therapy, 70 (8): 358–361.
This article explores the thoughts of local parents in relation to the integration of health and social care services to provide better care outcomes for their young children. The study used individual interviews and focus groups to extrapolate data from parents and professionals. Key themes emerging from the data indicated a need for appreciation of the importance of family and child health interdependence, alongside clear acknowledgment of a lack of communication and service integration between health and social services:
Pullon, S., McKinlay, B., Yager, J., Duncan, B., McHugh, P. and Dowell, A.(2015) ‘Developing indicators of service integration for child health: perceptions of service providers and families of young children in a region of high need in New Zealand’, Journal of Child Health Care, 19 (1): 18–29.
This study explored current service provision for young people with cerebral palsy who were transitioning from child to adult services. It used semi-structured interviews to record data from a range of consultants across 12 Scottish health boards and identified key areas for improvement including: coordination and communication within health services and coordination between health, education and social services. The study indicated the need for further research on the impact of problematic and variable transition on young people and their families:
Wright, A.E., Robb, J. and Shearer, M.C. (2015) ‘Transition from paediatric to adult health services in Scotland for young people with cerebral palsy’, Journal of Child Health Care, 20 (2): 1–9.
This article discusses the findings of a study which explored the experiences of parents whose child had a disability or was dependent on technology in relation to provision of help and support from health and social care agencies. The study used 3 sub-groups from which to draw comparisons relating to consistency or inconsistency of care delivery: children with a disability; children with a life-limiting/life-threatening illness or children with a technology dependence. Findings indicated a ‘battleground’ of activity and emotions in relation to relationship building with professional staff across agencies:
Whiting, M. (2012) ‘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’, Journal of Child Health Care 17(1) 92–108.
Chapter 6: Organisation and settings for care of children and young people
These two articles present arguments around the changing focus around children’s nursing challenging philosophies to reflect current societal and practices. They also highlight children’s rights and current family perspectives in western culture and challenge care givers in their own perspectives:
Coyne, I., Hallstrom, I. and Soderback M, (2016) ‘Reframing the focus from a family-centred care approach for children’s health care’, Journal of Child Health Care, 20 (4): 494–502.
Shields, L. (2015) ‘Family centred care: the “captive mother” revisited’, Journal of the Royal Society of Medicine, 109 (4): 137–140.
This article explores, on referral to a Child and Adolescent Mental Health Service (CAMHS) the naturally occurring first assessments to discover the beliefs that children hold regarding their reasons for attendance and the implications this has for the trajectory of the appointment and later engagement with interventions:
Stafford, V., Hutchby, I., Karim, K. and O’Reilly, M. (2016) ‘“Why are you here?” Seeking children’s accounts of their presentation to Child and Adolescent Mental Health Service (CAMHS)’, Clinical Child Psychology and Psychiatry, 21 (1): 3–18.
This article draws on a case study to demonstrate a holistic approach to providing care in both home and hospital settings for a 15-year-old girl with cystic fibrosis:
Tointon, K. and Hunt, J.A. (2016) ‘How holistic nursing can enhance the quality of life of children with cystic fibrosis’, Nursing Children and Young people, 28 (8): 22–25.
Chapter 7: Community care and care in non-hospital settings for children and young people
Gives a further insight into caring for children in their homes and bases this around the nursing process as discussed in the chapter:
Using nursing process to manage the care of the child at home.
Valentine, V. (1988) Home Health Care Management & Practice, 1 (2): 8–15.
This article discusses community aspects in nursing and its importance. Health promotion activities and models highlight collaborative working and also recognise the need for early intervention:
Ravella, P.C. and Thompson, L.S. (2001) ‘Educational model of community partnerships for health promotion’, Policy, Politics, & Nursing Practice, 2 (2): 161–166.
This paper looks at these interventions and gives thought to the realistic aspects of nursing practice:
Schaffer , M.A., Anderson, J.W. and Rising, S. (2015) ‘Public health interventions for school nursing practice’, The Journal of School Nursing, 32 (3): 195–208.
This paper looks more closely into the ethical aspects of community nursing. Pay particular attention to the risk and person respect; which supports my section in the chapter on home visiting and personal safety:
Oberle, K. and Tenove, S. (2000) ‘Ethical issues in public health nursing’, Nursing Ethics, 7 (5): 425-438.
This article takes a look the findings from a study of newly qualified nurses working in community areas for their first post:
Darvill, A., Fallon, D. and Livesley, J. (2014) ‘A different world?: The transition experiences of newly qualified children’s nurses taking up first destination posts within children’s community nursing teams in England’, Issues in Comprehensive Paediatric Nursing 37 (1): 6–24.
Chapter 8: Law and policy for children and young people’s nursing
This article explains consent relating to the child in an accessible manner using a real life clinical case as the focus for discussion:
Cornock, M. (2010) ‘Hannah Jones, consent and the child in action: a legal commentary’, Paediatric Nursing, 22 (2): 14–20
This article explores the difficulties associated with legal definition of consent in children and young people’s care:
Gilmore, S. and Herring, J. (2011) '”No” is the hardest word: consent and children's autonomy’, Child and Family Law Quarterly, 23 (1): 3–-25.
This article looks at mental capacity and what that means for issues of informed consent:
McFarlane, A. (2011) ‘Mental capacity: one standard for all ages’, Family Law, 41 (5): 479–485.
These articles look at aspects of consent in children and young people and how it affects them:
Taylor, R. (2007) ‘Reversing the retreat from Gillick? R (Axon) v Secretary of State for Health’. Child and Family Law Quarterly, 19 (1): 81–97.
Wheeler, R. (2006) ‘Gillick or Fraser? A plea for consistency over competence in children: Gillick and Fraser are not interchangeable’, British Medical Journal, 332 (7545): 807.
Chapter 9: Safeguarding children and young people
This is a useful article that describes important legislation and guidance if child maltreatment is suspected:
Hempton, S. and Williams, R., (2011) ‘Safeguarding children, Innovait, 4 (3): 145–153.
A systematic review of relevant health policy, and appropriate documentation on children and young people’s missed health care appointments:
Powell, C. and Appleton, J.V. (2012) ‘Children and young peoples missed health care appointments: reconceptualising, “Did Not Attend” to “Was Not Brought”’ – a review of the evidence for practice’, Journal of Research in Nursing, 17 (2): 181–192.
An evaluation of multiagency working combined with building lasting partnerships between social workers and health professionals:
Whiting, M., Scammell, A. and Bifulco, A. (2008) ‘The Health Specialist Initiative, professionals’ views of a partnership initiative between health and social care for child, safeguarding’, Qualitative Social Work, 7 (1): 99–117.
Chapter 10: Genertics and epigenetics: effects on children and young people
This research explores the experiences of parents attending a genetics based appointment in respect of their child with an intellectual disability:
Barr, O. and McConkey, R. (2007) ‘A different type of appointment: the experiences of parents who have children with intellectual disabilities referred for genetic investigation’, Journal of Research in Nursing, 12 (6): 637–652.
This article provides an overview of epigenetic changes illustrated using historical events to show the differences between genetic inheritance and epigenetic influences focusing on nutrition and brain development:
House, S.H. (2013) ‘Transgenerational healing: educating children in genesis of healthy children, with focus on nutrition, emotion, and epigenetic effects on brain development’, Nutrition and Health, 22 (1): 9–45.
This article explores the effects of stress on gene expression in relation to attachment and behaviour in childhood:
Letourneau, N., Giesbrecht, G.F., Bernier, F.P. and Joschko, J. (2014) ‘How do interactions between early caregiving environment and genes influence health and behavior?’, Biological Research for Nursing, 16 (1): 83–94.
This article explores the need for nursing to be holistic incorporating the need for a working knowledge of genetics to deliver the core competencies required of all health professionals:
Sharoff, L. (2015) ‘Holistic nursing in the genetic/genomic era’, Journal of Holistic Nursing, 34 (2): 146–153.
This article explores the role of epigenetics in the development of specific mental illnesses:
Stuffrein-Roberts, S., Joyce, P.R. and Kennedy, M.A. (2008) ‘Role of epigenetics in mental disorders’, Australia and New Zealand Journal of Psychiatry, 42 (2): 97–107.
Chapter 11: Infant mental wellbeing and health or ‘how to grow a healthy adult’
This research article explores some positive effects of FNP on selected aspects of care and child development in the Netherlands:
Mejdoubi, J., van den Heijkant, S.C.C.M. van Leerdam, F.J.M., et al. (2015) ‘The effect of VoorZorg, the Dutch Nurse-Family Partnership, on child maltreatment and development: a randomized controlled trial’, PLoS ONE, 10 (4): e0120182.
This research article explores some positive effects of an FNP approach on occurrence and reduction of domestic violence and abuse in the Netherlands:
Mejdoubi, J. van den Heijkant, S.C.C.M., van Leerdam, F.J.M. et al. (2013) ‘Effect of nurse home visits vs. usual care on reducing intimate partner violence in young high-risk pregnant women: a randomized controlled trial’, PLoS ONE, 2013; 8(10).
This article looks at fetuses, particularly in the 3rd trimester, selectively respond to external tactile stimulation. Fetal maturation affects the emergence of their differential responsivity. Fetuses in the 3rd trimester start showing a differential response to tactile stimulation of the abdomen by the mother compared to no stimulation while there is no such differential responsivity in fetuses in the 2nd trimester. Very relevant research article looking at how a major determinant in childhood rearing practices was impacted positively by using an FNP approach:
Marx, V. and Nagy, E. (2017) ‘Fetal behavioral responses to the touch of the mother’s abdomen: a frame-by-frame analysis’, Infant Behavior and Development 47: 83–91.
Similar in focus to the articles above, explores the positive impact of a FNP in a selected demographic sample:
Mejdoubi, J., van den Heijkant, S., Struijf, E. et al. (2011) ‘Addressing risk factors for child abuse among high risk pregnant women: design of a randomised controlled trial of the nurse family partnership in Dutch preventive health care’, BMC Public Health, 11: 823.
Chapter 12: Complexities of the developing and differing needs of children and young people
This paper provides a clear definition of quality of life from the health perspective, which is helpful for use with children and young people to guide practice and research:
Taylor, R., Gibson, F. and Franck, L. (2008) ‘A concept analysis of health-related quality of life in young people with chronic illness’, Journal of Clinical Nursing, 17 (14) 1823–1833.
Facilitating children's involvement in decisions about their care is often a complex process for nurses. This article encourages nurses to examine the basis of their decisions and use more explicit criteria for making decisions about the involvement of children and young people:
Coyne, I. (2005) ‘Consultation with children in hospital: children, parents’ and nurses’ perspectives’, Journal of Clinical Nursing, 15 (1): 61–71.
This paper examines the attitudes of young people with chronic illness who were facing transition, considering what young people wanted from a transition service and the ways in which provision could be improved from their perspective. It highlights the importance of taking an individualised approach to care of children and young people and actively involving them:
Soanes, C. and Timmons, S. (2004) ‘Improving transition: a qualitative study examining the attitudes of young people with chronic illness transferring to adult care’, Journal of Child Health Care, 8 (2) 102–112.
This paper looks at how the responsibilities for different aspects of medicine management are shared between young people and their parents in the home:
Newbould, J., Smith, F. and Francis, S. (2008) ‘“I'm fine doing it on my own”: partnerships between young people and their parents in the management of medication for asthma and diabetes’, Journal of Child Health Care, 12 (2): 116–128.
This paper explores children’s experiences and views of cancer care services:
Aldiss, S., Horstman, H., O’Leary, C. et al. (2008) ‘What is important to young children who have cancer while in hospital?’, Children & Society, 2 3(2): 85–98.
Chapter 13: Factors influencing wellbeing and development in children and young people
This article reviews Sure Start, a key New Labour policy to address heath inequalities in children under 4 years with the aim of preparing them to enter school. The author argues that whilst the extra investment was welcome, the focus on individual parents’ behaviour, usually mothers, separates parents from parenting and does not acknowledge the wider influence of environmental and institutional factors affecting parenting. This is a good critique and whilst Sure Start is now children’s centres, the argument that society needs to address factors that limit and isolate families is needed to improve children’s welfare outcomes is one that is still relevant today:
Clarke, K. (2006) ‘Childhood, parenting and early intervention: a critical examination of the Sure Start national programme’,Critical Social Policy, 26 (4): 699–721.
This article highlights many of the theories that seek to discover how the family unit works, factors affecting family functioning (including socioeconomic inequalities), and how child health and development can be supported by the family. Although both legislation and nurse education have progressed since this article was written, it offers an important perspective of family functioning when there is a child with a complex and or long-term illness within the family. This discussion will be useful for both acute and community based children’s nurses:
Crawford, D.A. (2002) ‘Keep the focus on the family’, Journal of Child Healthcare, 6 (2): 133–146.
This article, whilst written from a social worker perspective, outlines some real stories (although composite and developed to protect identify) of how the welfare system dealing with child protection can fail to meet individual need but if the capability approach, developed by Amartya Sen, were adopted a less demonising approach to child protection would be achieved. This discussion has resonances within health care to, where the medical model victim blames the individual rather than focusing on the influences which maybe inhibiting health and healthy behaviour:
Gupta, A. (2015) ‘Learning from others: an auto-ethnographic exploration of children and families social work, poverty and the capability approach’, Qualitative Social Work, 1–16 (4): 449–464.
This article is a report of two pilot studies aimed at improving the parent-child relationship and indirectly enhancing the resilience capacity among at-risk children:
Letourneau, N., Drummond, J., Fleming, D. et al. (2001) ‘Supporting parents: can intervention improve parent–child relationships?’, Journal Of Family Nursing, 7(2), 159–187.
This article reviews the changes to the policy focus around addressing child poverty in the UK over the last eight years. Analysis covers four strands: the prevalence of child poverty; the demographics of poor children; the experiences of poor children; and how parents in poverty allocate household resources:
Main G., and England, J.B. (2016) ‘Child poverty in the UK: measures, prevalence and intra-household sharing’, Critical Social Policy, 36 (1): 38–61.
Chapter 14: Universal screening and the role of the health visitor
This interesting article discusses universal and more targeted provision so it links with the article outlined in the ‘What’s the evidence’ section and to the format of the Health Child Programme:
Cowley, S., Kemp, L., Day, C. et al (2012) ‘Research and the organisation of complex provision: conceptualising health visiting services and early years programmes’, Journal of Research in Nursing, 17 (2): 108–124.
Useful in gaining an understanding of the challenges of implementing changes in practice:
Kemp. L. and Harris, E. (2012) ‘The challenges of establishing and researching a sustained nurse home visiting programme within the universal child and family health service system’, Journal of Research in Nursing, 17 (2): 127–138.
An insight into one of the key areas of health visiting practice:
Aston, M., Price, S., Etowa, E. et al (2015) ‘The power of relationships: exploring how public health nurses support mothers and families during postpartum home visit’, Journal of Family Nursing, 21 (1): 11–34.
Chapter 15: Assessment and care of children and young people with acute needs
This study deals with nurses’ knowledge of and attitudes towards the management of fever in one children’s hospital in Ireland:
Greensmith, L. (2012) ‘Nurses' knowledge of fever and attitudes towards fever and fever management in one Irish children's hospital’, Journal of Child Health Care, 17 (3): 305–316.
This article considers the aetiology, clinical assessment, investigation and management of vomiting and diarrhoea in children:
Mathieson, L. (2015) ‘Vomiting and diarrhoea in children’, InnovAiT: Education and Inspiration for General Practice, 8 (10): 592–598.
This article looks at how an interprofessional team helped improved the care for Septic Shock Care:
Tuuri, R., Gehrig, M., Busch, C. et al (2016) ‘"Beat the Shock Clock": an interprofessional team improves pediatric septic shock care’, Clinical Pediatrics. 55 (7): 626–638.
Chapter 16: Preparing children and young people for hospitalisation
Review of the opinions of 49 children aged from six to 16 regarding their information needs and the optimal timing for information giving:
Lambert, V., Glacken, M. and McCarron, M. (2013) ‘Meeting the information needs of children in hospital’, Journal of Child Health Care, 17 (4): 338–353.
This investigates a novel way of enhancing communication between children and nurses in hospital:
Lewis, P., Kerridge, I. and Jordan, C.F.C. (2009) ‘Creating space: hospital bedside displays as facilitators of communication between children and nurses’, Journal of Child Health Care, 13 (2): 93 – 100.
Chapter 17: Caring for children and young people in the peri- and postoperative recovery period
On how to improve the understanding of experiences of children and their families during recovery at home post surgery:
Ford, K., Courtney-Pratt, H. and FitzGerald, M. (2012) ‘Post-discharge experiences of children and their families following children’s surgery’, Journal of Child Health Care 16 (4): 320–330.
On how to assess pain in critically ill non-verbal children:
Mattsson, J.Y., Forsner, M. and Arman, M. (2011) ‘Uncovering pain in critically ill non-verbal children: nurses’ clinical experiences in the paediatric intensive care unit’, Journal of Child Health Care, 15 (3): 187–198.
On how to improve the management of pain in children at home:
Unsworth, V., Franck, L.S. and Choonara, I. (2007) ‘Parental assessment and management of children's postoperative pain: a randomized clinical trial’, Journal of Child Health Care, 11 (3): 186–194.
On the management of pain in neonates, infants and children:
Wilson-Smith, E.M. (2011) ‘Procedural pain management in neonates, infants and children’, British Journal of Pain, 5 (3): 4–12.
Chapter 18: Care of children and young people with respiratory problems
This UK based article explores different causes of wheeze in children:
Bryant, M. (2015) ‘Wheezy children’, InnovAiT, 8 (5): 266273.
This UK based article reviews the research into two viral infections thought to encourage the development of asthma in children:
Saglani, S. (2013) ‘Viral infections and the development of asthma in children’, Therapeutic Advances in Infectious Diseases. 1(4): 139–150.
This American based case study explores epiglottis, making the case that although this disease is now rarely seen in countries where the Hib vaccine is in widespread use, emergency department practitioners should still suspect it:
Wing, R. and Manno, M. (2015) ‘Gone but not forgotten: a case of respiratory distress’, Clinical Pediatrics, 54 (7): 697–699.
Chapter 19: Care of children and young people with cardiovascular problems
Although this article is focused on nursing management of children in North America, it also contains useful explanations of congenital cardiac defects not previously covered in Chapter 19:
Justice, L., Ellis, M., St George-Hyslop, C. et al. (2015) ‘Utilizing the PCICS nursing guidelines in managing the CICU patient’, World Journal for Pediatric and Congenital Heart Surgery. 6 (4): 604–615.
This article gives the history of paediatric cardiac care in Scotland. It’s useful from a historical perspective in demonstrating how advances in cardiology have evolved since the 1930’s:
Richens, T. (2006) ‘The development of paediatric cardiac services in Scotland’, Scottish Medical Journal, 51 (2): 4-7.
This article provides a useful overview of 2 congenital cardiac defects which have not been discussed in detail in Chapter 19:
Presnell, LB., Blankenship, A., Cheatham, SL. et al.(2015) ‘An overview of pulmonary atresia and major aortopulmonary collatreral arteries’, World Journal for Pediatric and Congenital Heart Surgery. 6 (4): 630–639.
Chapter 20: Care of children and young people with neurological problems
On the prevalence of pregnancies with a neural tube defect in the UK and how they could have been prevented:
Morris, J., Rankin, J., Draper, E. et al. (2015) ‘Prevention of neural tube defects in the UK: a missed opportunity’, Archives of Disease in Childhood, 101: 604–607.
On the use of the Glasgow Coma Scale:
Teasdale, G. Allan, D. Brennan, P. McElhinney, E. Mackinnon, L. (2014) ‘Forty years on: updating the Glasgow Coma Scale’, Nursing Times; 110 (42): 12–16.
On spinal dysraphic disorders and how they can result in neurological, orthopaedic and urological dysfunction:
Thompson, D. (2014) ‘Spinal dysraphic anomalies: classification, presentation and management’, Paediatrics and Child Health, 24 (10): 431–438.
Further reading on raising awareness of epilepsy in schools:
Brook, H.A., Hiltz, C.M.,Kopplin, V.L. and Lindeke, L.L. (2015) ‘Increasing epilepsy awareness in schools: a seizure smart schools project’, The Journal of School Nursing, 31 (4): 246–252.
On the Monro-Kelly doctrine:
Macintyre, I. (2014) ‘A hotbed of medical innovation: George Kellie (1770–1829), his colleagues at Leith and the Monro–Kellie doctrine’, Journal of Medical Biography, 22 (2): 93–100.
On Harvey Cushing and the birth of modern neurosurgery:
Savitz, S.I. (2000) ‘Cushing’s contributions to neuroscience, part 1: through the looking glass’, The Neuroscientist, 6 (5):411–414.
On modified Glasgow Coma Scales:
Kirkham, F.J., Newton, C.R.J.C. and Whitehouse, W. (2008) ‘Paediatric coma scales’, Developmental Medicine & Child Neurology, 50 (4): 267
On ventriculo-peritoneal shunt:
Mullan, E., Lucas, C., Mackie, S. and Carachi, R. (2014) ‘Audit of ventriculoperitoneal shunt infections in paediatric patients, 2006–2013’, Scottish Medical Journal, 59 (4): 198–203.
On third endoscopic ventriculostomy:
Sandberg, D.I. (2008) ‘Endoscopic management of hydrocephalus in pediatric patients: a review of indications, techniques, and outcomes’, Journal of Child Neurology, 23 (5): 550–560.
Wittenbrook, W. (2010) ‘best practices in nutrition for children with myelomeningocele', ICAN: Infant, Child, & Adolescent Nutrition, 2 (4): 237–245.
On neurodegenerative disorders:
Percy, A.K. (1987) ‘The inherited neurodegenerative disorders of childhood: clinical assessment’, Journal of Child Neurology, 2 (2).
On the early effects of brain tumours:
Bettina C. Reulecke, B.C., Erker, C.G., Fiedler, B.J. et al. (2008) ‘Brain tumors in children: initial symptoms and their influence on the time span between symptom onset and diagnosis’, Journal of Child Neurology, 23 (2): 178–183.
On late effects of brain tumours:
Roddy, E. and Mueller, S. (2015) ‘Late effects of treatment of pediatric central nervous system tumors’, Journal of Child Neurology, 31 (2): 237–254.
Chapter 21: Care of children and young people with urinary/renal problems
This qualitative research paper explored the experiences of the parents of 10 children when taking their child home for the first time after receiving a cancer diagnosis:
Flurry, M., Caflisch, U., Ullmann-Bremi, A. and Spichiger, E.(2011) ‘Experiences of parents with caring for their child after cancer diagnosis’, Journal of Pediatric Oncology Nursing, 28 (3): 143–153.
This paper describes the findings of a study that explored how children and families adapt to living with a variety of chronic illnesses, including chronic renal conditions:
Gannoni, A.F. and Shute, R.H. (2009) ‘Parental and child perspectives on adaptation to childhood chronic illness: a qualitative study’. Clinical Child Psychology and Psychiatry, 15 (1): 39–53.
This paper explores how collaboration between health and education staff is an important aspect of educational provision for children with chronic medical conditions. It includes interview data from eight healthcare professionals (paediatric nephrologists and specialist renal nurses) and 11 teachers who were involved in the care and schooling of children following renal transplants. Factors that negatively impacted on the effectiveness of collaboration between health and educational staff such as attitudinal, institutional and politico- economic factors are identified. The importance of proactive, preventative hospital–school liaison is emphasised.
Poursanidou, K., Garner, P. and Watson, A. (2008) ‘Hospital–school liaison: perspectives of health and education professionals supporting children with renal transplants’, Journal of Child Health Care. 12, (4), 253-267.
Following the advent of technological advances in diagnostic imaging that aid the diagnosis of various renal problems, the paper discusses which patients would benefit from early intervention.
Roupakias, S. ; Sinopidis, X., Karatza, A. and Varvarigou, A. (2013) ‘Predictive risk factors in childhood urinary tract infection, vesicoureteral reflux, and renal scarring management’, Clinical Pediatrics, 53 (12): 1119–1133.
Chapter 22: Care of children and young people with endocrine problems
Read the following article to learn more about diabetic ketoacidosis:
Mallare, J.T., Cordice, C.C., Ryan, B.A. et al. (2003) ‘Identifying risk factors for the development of diabetic ketoacidosis in new onset type 1 diabetes mellitus’, Clinical Pediatrics, 42 (7): 591–597.
Read more about growth hormone:
Hardin, D.S., Kemp, S.F. and Allen, D.B. (2007) ‘Twenty years of recombinant human growth hormone in children: relevance to pediatric care providers’, Clinical Pediatrics, 46 (4): 279–286.
You can read more on hypothyroidismin the article below:
Cameo, T., Gumer, L.B., Williams, K.M., Gomez, J., McMahon, D.J. and Oberfield, S.E. (2013) ‘A retrospective review of newborn screening for congenital hypothyroidism and newborn thyroid disease at a major medical center’, Clinical Pediatrics, (11): 1054–1058.
Read more on early puberty:
Kletter, G.B., Klein, K.O.. Wong, Y.Y. (2015) ‘Pediatrician’s guide to central precocious puberty’, Clinical Pediatrics, 54 (5): 414–424.
Read these two articles to find out more on precocious puberty:
Nield, L. S., Cakan, N. and Kamat, D. (2007) ‘A practical approach to precocious puberty’ Clinical Pediatrics, 46 (4): 299–236.
Mallare, J.T., Cordice, C. C., Ryan, B. A., et al. (2003) ‘Identifying risk factors for the development of diabetic ketoacidosis in new onset type 1 diabetes mellitus’, Clinical Pediatrics, 42 (7): 591–597.
Chapter 23: Care of children and young people with immunological problems
This article reviews central line infection and management in a tertiary children’s hospital; it is likely you will nurse children with central lines during your career therefore this is a useful article:
Melville, S. and Paulus, S. (2013) ‘Impact of a central venous line care bundle on rates of central line associated blood stream infection (CLABSI) in hospitalised children’ Journal of Infection Prevention. 15(4):139–141.
The benefits and disadvantages of treatment options should always discussed with families depending on care provision. It is important for you to find out about care and options available so that you can have an informed discussion with families. Review this article which considers the importance of quality of life and long-term treatment.
Zampelli, A.R. (2007) ‘improving quality of life at home for pediatric patients and families with primary immune deficiencies using subcutaneous immune globulin infusions’, Home Health Care Management Practice. 19 (6): 431–435.
An ongoing challenge in practice and an important public health concern is the appropriate use of antibiotics. Nursing children with infections will be a regular part of your role. Review this article to consider caregivers understanding and the challenges this may bring.
Salazar, M.L., English, T.M. and Eiland, L.S. (2012) ‘Caregivers’ baseline understanding and expectations of antibiotic use for their children’, Clinical Pediatrics. 51 (7): 632–637.
Chapter 24: Care of children and young people with musculosketetal problems
Read this article and reflect on the increasing problem of obesity in children and how this impacts on their growing skeleton. Obesity is also linked to slipped capital femoral epiphysis and vitamin d deficiency:
Hainsworth, K.R., Miller, L.A., Stolzman, S.C., et al. (2012) ‘Pain as a comorbidity of pediatric obesity’, ICAN: Infant, Child, & Adolescent Nutrition, 4 (5): 315–320.
Although not related to an orthopaedic problem, this article describes a multidisciplinary psychological approach to treating the adolescent with amplified pain syndrome.
Griffin, A. and Christie, D. (2008) ‘Taking the psycho out of psychosomatic: using systemic approaches in a paediatric setting for the treatment of adolescents with unexplained physical symptoms’, Clinical Child Psychology and Psychiatry, 13 (4): 531– 542.
For latest research for pain management:
Twycross, A.M., Williams, A.M. and Allen Finley, G. (2015) ‘Surgeons’ aims and pain assessment strategies when managing paediatric post-operative pain: a qualitative study’, Journal of Child Health Care, 19: 513–523.
Using a research method called Photovoice this article presents children’s views on their injury experience and reviews fracture prevention.
Sims-Gould, J., Race, J., Hamilton, L. et al. (2014) ‘“I fell off and landed badly”: children’s experiences of forearm fracture and injury prevention’, Journal of Child Health Care, 20 (1): 98–108.
MDT approach to treating amplified pain syndrome
Griffin, A. and Christie, D. (2008) ‘Taking the psycho out of psychosomatic: using systemic approaches in a paediatric setting for the treatment of adolescents with unexplained physical symptoms’, Clinical Child Psychology and Psychiatry, 13 (4): 531–542.
Chapter 25: Care of children and young people with haematological problems
This article gives insight into the experience of young people with sickle cell disease:
Erskine, R. (2011) ‘Adolescent boys with sickle cell disease: a qualitative study’, Clinical Child Psychology and Psychiatry, 17 (1): 17–31.
Chapter 26: Care of children and young people with dermatological problems
This is a review of the pertinent literature synthesising the medical management of eczema from 2005–2010:
Carbone, A., Siu, A. and Patel, R. (2010) ‘Pediatric atopic dermatitis: a review of the medical management’, Annals of Pharmacotherapy, 44 (9): 1448–1458.
This is a research study into skin infection in children with atopic eczema and evaluates antimicrobial resistance and frequent skin infections:
Bell, M.C., Stovall, S.H., Scurlock, A.M. et al. (2012) ‘Addressing antimicrobial resistance to treat children with atopic dermatitis in a tertiary pediatric allergy clinic’, Clinical Pediatrics, 51 (11): 1025–1029.
This is a research enquiry into nurses’ knowledge and capacity to meet the needs of children and young people with eczema. This article also explores nurses’ attitudes to skin conditions:
Gill, S. and Coad, J. (2007) ‘An exploratory study into nurses’ understanding and knowledge of children and young people with eczema’, Journal of Research in Nursing, 12 (5): 567–583.
This article provides case studies from infancy to adolescence demonstrating the impact of acne on young people and the importance of knowledgeable practitioners:
Wynnis, L.T and Friedlander, S.F. (2008) ‘Acne through the ages: case based observations through childhood and adolescence’, Clinical Pediatrics, 47 (7): 639–651.
This article describes many fungal infections, included in the article are pictures of fungal infections, treatments and advice for patients. Some case studies are also included:
Ali, N. (2009) ‘Fungal Infections’, InnovAiT: Education and Inspiration for General Practice, 2 (6): 330–335.
Chapter 27: Care of children and young people with thermal injury
An easy read summary article covering all the essential considerations from the immediate care (first aid) after injury and beyond. Not specifically child-centred, but includes CYP in a generic overview. Some good illustrations included:
Price,.L. and Milner.S. (2012) ‘The totality of burn care. Trauma, 15 (1): 16–28.
A useful summary article on key issues in the critical care management of burns, including fluid resuscitation, inhalation injury, nutrition and sepsis management:
Kasten,.K., Makley, A. and Kagan, R. (2011) ‘Update on the critical care management of severe burns’, Journal of Intensive Care Medicine, 26 (4): 223–236.
A qualitative study report describing some of the qualities that nurses display in caring for children after severe burn injury. This paper gives an insight into burns nursing as being far more than just wound care and dressings. It also illustrates the long term nature of burn care/ holistic support required:
Zengerle-Levy, K. (2004) ‘Practices that facilitate critically burned children’s holistic healing’, Qualitative Health Research, 14 ( 9): 1255–1275.
A summary article on the importance of nutrition in burn care. An explanation is given on the metabolic response to burns, the assessment and monitoring process and the benefits of enteral nutrition:
Rodriguez, N., Jeschke, M., Williams, F. et al. (2011) ‘Nutrition in burns: galveston contributions’, Journal of Parenteral and Enteral Nutrition, 35 (6): 704–714.
An explanatory article on the various types of skin substitutes used to replace epidermis and dermis skin. A good explanation of the skin grafting process is also given with illustrations:
Chester,D. and Papini, R. (2004) ‘Skin and skin substitutes in burn management’, Trauma, 6: 87–99.
Chapter 28: Care of children and young people with fluid and electrolyte imbalance
If you are interested in learning more about the treatment and management of diabetic ketoacidosis, this medically focused article maybe of use:
Pulin, B. and Koul, M.B. (2009) ‘Diabetic ketoacidosis: a current appraisal of pathophysiology and management’, Clinical Pediatrics, 48 (2): 135–144.
This article explores a research study into the understanding of fluid balance charts. Although the research focuses on members of the medical profession, its findings are transferable to nursing and demonstrates the importance of good documentation and the ability to read and interpret patient information for clinical decision making:
Tang, V.C.Y. and Lee, E.W.Y. (2010) ‘Fluid balance chart: do we understand it?’, Clinical Risk, 16 (1): 10–13.
This is a research article based on research carried out in Bangladesh into the treatment and management of hypernatremia in diarrhoeal disease. It reiterates the importance of using oral rehydration salt solution as a treatment regime:
Chisti, M.J., Ahmed, T., Ahmed, A.M.S. et al. 2016) ‘Hypernatremia in children with diarrhea: presenting features, management, outcome, and risk factors for death’, Clinical Pediatrics, 55 (7): 654–663.
Chapter 29: Care of children and young people with gastrointestinal problems
This article takes a global perspective to explore the importance of nutrition in children under the age of 3 years, alongside child development:
Engle, P. and Huffman, S.L. (2010) ‘Growing children’s bodies and minds: maximizing child nutrition and development’, Food and Nutrition Bulletin, 31 (2): S186–S197.
This piece of research, undertaken in New Zealand, explores how the media influences the nutritional perceptions of adolescents and has relevance to the UK:
Dorey, E. and McCool, J. (2009) ‘The role of the media in influencing children’s nutritional perceptions’, Qualitative Health Research, 19 (5): 645–654.
This article is written from a medical point of view, but offers an insight into the nutritional need and management of infants with intestinal failure and short bowel syndrome:
Cole, C.R. and Kocoshis, S.A. (2013) ‘Nutrition management of infants with surgical short bowel syndrome and intestinal failure’, Nutrition in Clinical Practice, 28 (4): 421–428.
Chapter 30: Discharge planning and transfer for children and young people
Forty-four patients were interviewed at three time points to determine their information needs and preference for involvement. Patients identified 4.74 needs prior to admission, 5.05 needs prior to discharge, and 5.35 needs after discharge. Patients expressed a desire for information and preference to be involved. These findings provide initial evidence for the efficacy of future interventions in designing care as seen through the eyes of the patient:
Anthony, M.K. and Hudson-Barr, D. (2004) ‘A patient-centered model of care for hospital discharge’, Clinical Nursing Research, 13 (2): 117–136.
This paper reports on the second phase of a study regarding the development of a paediatric discharge risk screening tool desired to identify children in need of post discharge care beyond the routine of nursing and physician teaching and follow up:
Domanski, M.D., Jackson, A.C., Miller, J. and Jeffrey, C. (2003) ‘Towards the development of a paediatric discharge planning screening tool’, Journal of Child Health Care, 7 (3): 163–83.
This paper outlines a study which explored a cohort of children who were discharged within 24 hours. Post appendicectomy children were divided into two cohorts: ones who were visited by a nurse post discharge and others received telephone evaluation. Findings showed the value of nursing contact in enabling families to care for children at home:
Pfeil, M., Mathur, A., Singh, S. et al. (2007) ‘Home next day: early discharge of children following appendicectomy’, Journal of Child Health Care, 11 (3): 208–220.
This study aims to establish service provision in Scotland for Young People with cerebral palsy and the belief of some clinicians what future provision should provide It explores Transition from paediatric to Adult health care services finding that the process of transition for these young people to adult services is characterised as being poorly planned and coordinated resulting in reduction in services:
Wright, A.E., Robb, J. and Shearer, M.C. (2016) ‘Transition from paediatric to adult health services in Scotland for young people with cerebral palsy’, Journal of Choild Health Care, 20 (2): 205–213.
This paper explores how discharge planning for patients who require care in the home following a period in hospital is understood and developed through the lenses of complexity theory. The findings from the study show that nurses have to continuously deal with uncertainty, surprises and the unknown. That nurses have to make sense and take charge of dynamic complex events and new knowledge, and manage complex relations and information. The researchers argue that looking upon practice from the lenses of complexity theory, and therefore accepting the complexity of practice, could facilitate the development of nurses’ skills in order to guarantee good quality discharge planning:
Augustinsson, S. and Petersson, P. (2015) ‘On discharge planning: dynamic complex processes – uncertainty, surprise and standardisation’, Journal of Research in Nursing, 20 (1): 39–53.
Chapter 31: Care of highly dependent and critically ill children and young people
The concept of family-centred care (FCC) underpins everything that children’s critical care nurses do. This systematic review identifies how communication tailored to the needs of CYP and parents’ is key to providing FCC. You may wish to reflect on the findings of this article to your own experience of your critical care placement:
Foster, M., Whitehead, L. and Maybee, P. (2015) ‘The parents’, hospitalized child’s, and health care providers’ perceptions and experiences of family-centered care within a pediatric critical care setting: a synthesis of quantitative research’, Journal of Family Nursing, 22 (1): 6–73.
We should constantly reflect on whether what we do is perceived as caring in a technologically-orientated environment such as PICU. This paper explores the concept of caring from the parent’s perspectives and whether we continue to meet their needs within this domain:
Mattsson, J.Y., Arman, M. and Castren, M. (2014) ‘Meaning of caring in pediatric intensive care unit from the perspective of parents: a qualitative study’, Journal of Child Health Care, 18 (4): 336–345.
It is imperative that we continue to manage pain in children who are sedated and unable to express their pain effectively. This paper examines how nurses conceptualise the pain experience in critically ill CYP:
Mattsson, J.Y., Forsner, M. and Arman, M. (2011) ‘Uncovering pain in critically ill non-verbal children: nurses’ clinical experiences in the Paediatric Intensive Care Unit’, Journal of Child Health Care, 15 (3): 187–198.
Facilitating a dignified end of life care and death is integral to PICU practice and leaves lasting memories for all those involved. This paper explores what dignified death means to nurses and physicians on PICU:
Poles, K. and Bousso, R.S. (2011) ‘Dignified death: concept development involving nurses and doctors in Pediatric Intensive Care Units’, Nursing Ethics, 18 (5): 694–709.
It is now known that the complications of critical illness go beyond physical and physiological recovery. This systemic review examines the importance of the psychological and emotional recovery following critical illness:
Rennick, J.R. and Rashotte, J. (2009) ‘Psychological outcomes in children following pediatric intensive care unit hospitalization: a systematic review of the research’, Journal of Child Health Care, 13 (2): 128–149.
Chapter 32: Care of the neonate
Mothers of preterm infants are actively encouraged to express breast milk for predominately for its therapeutic or non-nutritional benefits. This research article explores the meaning and importance of expressing breast milk to mothers of very low birth weight babies:
Rossman, B., Kratovil, A.L., Greene, M.M., Engstrom, J.L. and Meier, P.P. (2013) ‘“I have faith in my milk”: the meaning of milk for mothers of very low birth weight infants hospitalized in the Neonatal Intensive Care Unit’, Journal of Human Lactation, 29 (3): 359–365.
Advancements in neonatal technology and pharmacology combined with advancements in our understanding of neonatal pathophysiology have led to the survival of neonates at the edges of viability. Neonatal care provides the neonatal team with many ethical dilemmas. This research article identifies the possible ethical challenges that can face the neonatal nurse in her daily work, rather than the obvious life and death decisions associated with neonatal care:
Strandås, M. and Fredrikson, S-T.D (2015) ‘Ethical challenges in neonatal nursing’, Nursing Ethics, 22 (8): 901–912.
Family-centred care is a keystone and central tenet to neonatal care. This research article explores the results of a collaborative workshop between neonatal nurses and parents in order to identify strategies that can be used to enhance the delivery of family-centred care in the neonatal unit:
Trajkovski, S., Schmied, V., Vickers, M. and Jackson, D. (2015) ‘Using appreciative inquiry to bring neonatal nurses and parents together to enhance family-centred care: a collaborative workshop’, Journal of Child Health, 9: 239–253.
Chapter 33: Care of children and young people with a malignant condition
This paper examines the impact of childhood cancer on the family and particularly focuses on family strive for normality during cancer treatment and how family suffering may be lessened:
West, C.H., Bell, J.M., Woodgate, R.L. and Moules, N. (2015) ‘Waiting to return to normal: an exploration of family systems intervention in childhood cancer’, Journal of Family Nursing, 21 (2): 261–294.
The research study presented in this paper follows up those who have had childhood cancer treatment and examined their independence levels and how these changed/developed after cancer treatment was completed:
Jervaeus, A., Sandeberg, M., Johansson, E. and Wettergren, L. (2014) ‘Survivors of childhood cancer report high levels of independence five years after diagnosis’, Journal of Pediatric Oncology Nursing, 31 (5): 245–251.
This research study examined children’s experiences (3 years to 9 years) of childhood cancer and used interviews/drawing techniques to examine what bought them comfort as they underwent treatment:
Ångström-Brännström, C. and Norberg, A. (2014) ‘Children undergoing cancer treatment describe their experiences of comfort in interviews and drawings’, Journal of Pediatric Oncology Nursing, 31 (3): 135–146.
This qualitative study examined nurses’ experiences working with siblings when their brother or sister had cancer. It offers suggestions about how nurses can involve and support siblings:
O’Shea, E., Shea, J., Robert, T. and Cavanaugh, C. (2012) ‘The needs of siblings of children with cancer: a nursing perspective’, Journal of Pediatric Oncology Nursing, 29 (4): 221-231.
Chapter 34: Care of children and young people with life limiting illness
The use of the Delphi process to help prioritising future research topics for children’s hospice care:
Malcolm, C., Knighting, K., Forbat, L. et al. (2009) ‘Prioritisation of future research topics for children’s hospice care by its key stakeholders: a Delphi study’, Palliative Medicine, 23 (5): 398–405.
On how to generate a list of priority topics for children’s hospice care research in Scotland:
Malcolm, C., Forbat, L., Knighting, K. et al. (2008) ‘Exploring the experiences and perspectives of families using a children’s hospice and professionals providing hospice care to identify future research priorities for children’s hospice care’, Palliative Medicine, 22 (8): 921–928.
On how to establish incidence and prevalence of children needing palliative care in Wales:
Hain, R.D.W. (2005) ‘Palliative care in children in Wales: a study of provision and need’, Palliative Medicine, 19 (2): 137–142.
Chapter 35: Care of children and young people at the end of life
Providing support to the dying child is fundamental feature of paediatric palliative care. This article examines the crucial supports that should be available and offered to family members of the dying child:
Knapp, C.A. and Contro, N. (2009) ‘Family support services in pediatric palliative care’, American Journal of Hospice & Palliative Medicine, 26 (6): 476–482.
This paper explores the difficult symptoms that children with a life limiting condition face:
Malcolm, C., Forbat, L., Anderson, G. et al. (2011) ‘Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families’, Palliative Medicine, 25 (4): 357–364.
Chapter 36: Care of children and young people with learning disabilities
This article looks at the relationship between health care providers and children with intellectual disabilities and their parents and their impact on health outcomes:
Aston, M., Breau, L. and MacLeod, E. (2014) ‘Understanding the importance of relationships Perspective of children with intellectual disabilities, their parents, and nurses in Canada’, Journal of Intellectual Disability, 18 (3): 221–237.
This article focusses on the story of a mother whose child has an intellectual disability and renders her personal reflection about her journey through the Canadian health care system:
Bye, A. and Ashton, M. (2016) ‘Brenna’s story A critical reflection and analysis of one mother’s experience of navigating the medical system with a child with intellectual disabilities’, Journal of Intellectual Disability, 20 (1): 82–92.
This article looks at communication between parents and healthcare professionals:
Jansen, S.LG., van der Putten, A.A.J. and Vlaskamp, C. (2017) ‘Parents’ experiences of collaborating with professionals in the support of their child with profound intellectual and multiple disabilities A multiple case study’, Journal of Intellectual Disability, 21 (1): 53–67.
This article looks at how to reduce health disparities for people with intellectual disabilities:
Northway, R. (2017) ‘Laying the foundations for health’, Journal of Intellectual Disability, 21 (1): 3–.
This article outlines a mother’s reflections on her experience of raising a child with autism spectrum disorder and its impact on her life:
O’Connell, T., O’Halloran, M. and Doody, O. (2013) ‘Raising a child with disability and dealing with life events A mother’s journey’, Journal of Intellectual Disability, 17 (4): 376–386.
This article defines the term ‘profound and multiple learning disabilities’ (PMLD):
Bellamy, G., Croot, L., Bush, A. et al. (2010) ‘A study to define profound and multiple learning disabilities (PMLD)’, Journal of Intellectual Disabilities, 14 (3): 221–235.
This article looks at the links between socioeconomic factors and children and adolescents with intellectual disabilities in Britain:
Emerson, E. and Hatton, C. (2009) ‘The contribution of socio-economic position to the health inequalities faced by children and adolescents with intellectual disabilities in Britain’, American Journal on Mental Retardation, 112 (2): 140–150.
This article is a systematic review and meta-analysis of observational studies of the prevalence and risk of violence against children with disabilities:
Jones, L., Bellis, M.A., Wood, S. et al. (2012) ‘Prevalence and risk of violence against children with disabilities: a systematic review and meta-analysis of observational studies’, The Lancet, 380 (9845): 899–907.
This article looks at how a language tool based on signs and symbols can help nurses communicate with young people with learning disabilities:
Vinales, J. J. (2013) ‘Evaluation of Makaton in practice by children's nursing students’, Nursing Children and Young People, 25 (3): 14–17.
Chapter 37: Care of children and young people with mental health issues
This journal article discusses the use of a telehealth (videoconferencing) intervention for helping young people diagnosed with ASD and their families to communicate more effectively and reduce the young person’s anxiety:
Hepburn, S.L., Blakeley-Smith, A., Wolff, B. and Reaven, J.A. (2015) ‘Telehealth delivery of cognitive behavioural intervention to youth with autism spectrum disorder and anxiety: a pilot study’, Autism 20, (2): 207–218.
This journal article explores the implementation of shared decision-making in Child and Adolescent Mental Health Services, and identify clinician-determined facilitators:
Abrines-Jaume, N., Midgeley, N., Hopkins, K. et al. (2016) ‘A qualitative analysis of implementing shared decision making in Child and Adolescent Mental Health Services in the United Kingdom: stages and facilitators’, Clinical and Child Psychology and Psychiatry, 21 (1): 19–31.
This journal article discusses how children of parents with mental distress avoid stigma in their day-to-day activities – it presents an insight into the impact of mental illness on children and family:
Haug-Fjone, H., Ytterhus, B. and Almvik, A. (2009) ‘How children with parents suffering from mental health distress search for ‘normality’ and avoid stigma: “to be or not to be … is not the question”’, Childhood, 16 (4): 461–477.
How fear and anxiety may be ‘good’ in certain situations, and may enhance performance:
Brymer, J. and Schweitzer, R. (2013) ‘Extreme sports are good for your health: a phenomenological understanding of fear and anxiety in extreme sport’, Journal of Health Psychology, 18 (4): 477–487.
On the impact of fear and anxiety on psychopathology:
Sylvers, P., Lilienfeld, S.O. and LePrairie, J.L. (2011) ‘Differences between trait fear and trait anxiety: implications for psychopathology’, Clinical Psychology Review, 31 (1): 122–137.
Chapter 38: Leadership and management in children and young people’s nursing
This paper provides an analysis of the 31 studies which reported on children and young people, aged 2 to 24 years, views about health professionals. The themes emerging from the children and young people’s views comprised wanting health professionals behave in ways that are associated with ethical, authentic and transformational leadership styles.
The results suggest that concerns raised by children and young people were clearly, with the application of greater self-awareness, within an individual’s ability and responsibility to improve:
Robinson, S. (2010) ‘Children and young people’s views of health professionals in England’, Journal of Child Health Care, 14 (4): 310–326.
This research involved a review of literature on early years leadership and the production of 25 case studies of leaders of ‘highly effective’ children’s centre. The aim of the research was to address lack of knowledge of leadership in Sure Start Children’s Centre. The study focused on exploring further the key challenges leaders face and in turn establishing the behaviours, knowledge, skills and attributes needed for the role. The study found that leaders demonstrated eight core behaviours, to address these challenges. These included engaging responsively with families, using evidence to drive improvement, motivating and empowering staff and embracing integrated working. The authors recommend that these behaviours inform the delivery of future leadership development for these leader:
Coleman, A. Sharp, C. Handscomb, G. (2015) ‘Leading highly performing children’s centres: supporting the development of the ‘accidental leaders’, Educational Management Administration & Leadership, 44 (5): 775–793.
The rationale for the study from the authors was that that to their knowledge the impact of managers’ authentic leadership on supportive professional practice environments and job satisfaction among new graduate nurses has not yet been examined. The purpose of the current study was to test a theoretical model linking authentic leadership to new graduate nurses’ job satisfaction through its effect on work environments that support professional practice. The theoretical framework guiding this study combined authentic leadership theory (Avolio et al., 2004) with the Magnet Hospital model of supportive professional practice environments (Aiken and Patrician, 2000). The researchers reported a positive correlation between the impact of managers using the four components of authentic leadership on the elements of supportive professional practice environments. The findings suggest that managers who demonstrate authentic leadership create supportive professional practice environments and are more likely to enhance new graduate nurses’ job satisfaction. The researchers offered actionable strategies based on their findings from their study to improve the retention of new graduate nurses:
Fallatah, F. Laschinger,H K,S. (2016) The influence of authentic leadership and supportive professional practice environments on new graduate nurses’ job satisfaction’, Journal of Research in Nursing, 21 (2): 125–136.
Chapter 39: Lifelong learning and continuing professional development for the children and young people’s nurse
This study explored the link between thinking styles rather than learning styles of students in a high fidelity simulation scenario. The scenario was a patient with an acute episode of asthma. The authors suggested that both expert and novice nurses use a degree of intuitive thinking in their practice and wanted to explore whether this had an impact on their responses. They observed 29 students in the high fidelity simulation scenario and three to six weeks later the students also completed a questionnaire to identify their preferred thinking style. They found that students thinking style had a significant relationship with their responses but contrary to their beliefs the students had predominately rational rather than intuitive thinking styles. The study was undertaken in the USA and this may influence one of the studies concerning findings in that most students either did not or were reluctant to administer oxygen without a physician’s authorisation. It may reflect the non-social care health service in the USA but it would be interesting to replicate the study in the UK.
Burbach, B., Barnason, S. and Hertzog, M. (2015) ‘Preferred thinking style, symptom recognition, and response by nursing students during simulation’, Western Journal of Nursing Research, 37 (12): 1563–1580.
This is quite an old reference and it is important to look at more recent work also but it is interesting to see that the issues have not changed very much. The nurse that is newly qualified and is not supported through this transitionary period will often leave nursing. The preceptee is described as having the knowledge but needing to practice to become competent and confident.
PFeil, M. (1999) ‘Preceptorship: the progression from student to staff nurse’, Journal of Child Health Care, 3 (3): 13–18.
This paper explores the impact and relationship between politics and education in the USA but has real relevance to the debate in the UK also. The author talks of nurse education being ‘infused with politically driven ideas’ (p115). In the USA they are deciding whether to insist on an academic qualification of a Bachelor of Science in Nursing as an entry to the profession qualification. One of the issues is around declining numbers of applicants as they have found when they asked for nurse practitioners to have achieved a doctorate academic award. They also discuss the nature of education being a business and how it is important to ensure that even when more numbers in the class room means more income we do not set up a student nurse to fail or reduce the standards required to pass:
Condon, B. (2015) ‘Politically charged issues in nursing’s teaching-learning environments’, Nursing Science Quarterly, 28 (2): 115–120.
Chapter 40: Decision-making and accountabilty in children and young people’s nursing
The aim of this study was to assess the attitudes of Turkish intensive care nurses to selected ethical issues, related to end-of-life decisions in paediatric intensive care. Questionnaires were given to volunteers at two conferences in Turkey. The results revealed that most of the nurses failed to agree about withholding (65%) or withdrawing (60%) of futile treatment. In futile treatment cases, the nurses tended to leave the decision-making to parents or act paternalistically during end-of-life care. This research concluded that the intensive care nurses should be supported by ethics consultation services and have training in their role as the patient advocate in end-of-life decisions:
Akpinar, A., Senses, M. and Aydin Er, R. (2009) ‘Attitudes to end-of-life decisions in paediatric intensive care’, Nursing Ethics, 16 (1): 83–92.
The aim of this study was to describe the level of decisional conflict experienced by parents considering surgery for their CYP and to determine if decisional conflict and perceptions of shared decision making are related to each other. Parents completed the Shared Decision Making Questionnaire and the Decisional Conflict Scale. The authors concluded that many parents experienced considerable decisional conflict when making decisions about their child’s surgical treatment. Parents who perceived themselves as being more involved in the decision-making process reported less decisional conflict. This research highlights the importance of delivering understandable information and active engagement with parents and CYP in the decision-making process:
Chomey, J., Haworth, R., Graham, M.E. et al. (2015) ‘Understanding shared decision making in pediatric otolaryngology’, Otolaryngology – Head and Neck Surgery, 152 (5): 941–947.
This article provides a synopsis of the research, which identifies the reasons why adults wish to protect children. The authors provide a summary of CYP’s competence to participate in decision-making arguing for a model of shared decision-making using a situational perspective:
Coyne, I. and Harder, M. (2011) ‘Children’s participation in decision-making’, Journal of Child Health Care, 15 (4): 312–319.
The aim of this article on decision-making in paediatric care was to identify important aspects of its possible use in clinical practice and to obtain a base for future research:
Hallstrom, I. and Elander, G. (2005) ‘Decision making in paediatric care: an overview with reference to nursing care’, Nursing Ethics, 12 (3): 223–238.
The aim of this article is to provide decision-making researchers with an insight into paediatric decision science and to establish a blue- print for future research that will contribute to high-quality paediatric decision-making in the future. The article highlights the need for new measures or methods to capture the differing perspectives of the parent and child:
Lipstein, E., Brinkman, W., Fiks, A. et al. (2014) ‘An emerging field of research: challenges in pediatric decision making’, Medical Decision Making. 35: 403–408.
Chapter 41: Being politically aware and professionally proactive in children and young people’s nursing
An investigation in Africa showing clearly how power and dominance can affect women and girls:
Baines, E. (2014) ‘Forced marriage as a political project: sexual rules and relations in the Lord’s Liberation Army’, Journal of Peace Research, 51 (3): 405–417.
An analysis of UK based research studies on forced marriage:
Chantler, K. (2012) ‘Recognition of and intervention in forced marriage as a form of violence and abuse’, Trauma, Violence and Abuse, 13 (3): 176–183.
A study and analysis of the impact of e-mail campaign on the voting intentions of law makers:
Bergan, D.E. (2009) ‘Does grassroots lobbying work? A field experiment measuring the effects of an e-mail lobbying campaign on legislative behaviour’, American Politics Research, 37 (2): 327–352.
Review of the opinions of 49 children aged from six to 16 regarding their information needs and the optimal timing for information giving:
Lambert, V., Glacken, M. and McCarron, M. (2013) ‘Meeting the information needs of children in hospital’, Journal of Child Health Care, 17 (4): 338–353.
Investigates a novel way of enhancing communication between children and nurses in hospital:
Lewis, P., Kerridge, I. and Jorden, C.F.C. (2009) ‘Creating space: hospital bedside displays as facilitators of communication between children and nurses’, Journal of Child Health Care, 13 (2): 93–100.
An investigation illustrating how a Teddy Bear Hospital engages the interest of children in kindergarten and facilitates effective information giving:
Leonhardt, C., Margraf-Stiksrud, L.B. et al. (2014) ‘Does the “Teddy Bear Hospital” enhance pre-school children’s knowledge: a pilot study with a pre/post-case control design in Germany’, Journal of Health Psychology, 19 (10): 1250–1260.