The second edition of the Medicines Management Toolkit gives guidance for those working within children’s palliative care services across the UK, with information on improving the safety and quality of medicines management. Chapters include: competencies, transcribing, non-medical prescribing and learning from errors.
Together for Short Lives, 2014. Medicines Management Toolkit. Bristol. Together for Short Lives
Click here to download
Produced by the East Anglia's Children's Hospices (EACH) Library & Information Service - www.each.org.uk/library
[Report] Supporting children with life-limiting conditions and their families - a regional report - project summary
Research from Martin House Children's Hospice. Between 2011 - 2013 the hospice collected information about the range of services available to children and young people with life-limiting conditions and their families living in the region. The research also explored the views of professionals and families about the care and support available, and the strategies and resources families draw upon in order to access the support they need. This summary presents the key messages and findings and concludes with implications and recommendations for policy and practice.
Martin House Children's Hospice, 2014. Supporting children with life-limiting conditions and their families - a regional evaluation - project summary, April 2014. Martin House.
Click here to download
The full report, published last year is also available to download
Martin House Children's Hospice, 2014. Supporting children with life-limiting conditions and their families - a regional evaluation - project summary, April 2014. Martin House.
Click here to download
The full report, published last year is also available to download
[Article] Epilespy and seizures: sorting out seizures
Written by a US Paediatric Neurologist for both healthcare staff and parents, this very informative article (part 1) discusses the importance of being able to identify seizures, in particular what the seizure looks like, how it starts, how it progresses, whether the patient is alert or not. It details conditions that often mimic seizures, as well as the various types of seizures that occur, particularly in childhood and adolescents.
Wolf, S. & McGoldrick P. 2013. Epilepsy and seizures: sorting out seizures. Exceptional Parents, 43 (11) p 38 - 42.
To access electronically, click here, log in using your Athens username and password and search via the CINAHL database.
Wolf, S. & McGoldrick P. 2013. Epilepsy and seizures: sorting out seizures. Exceptional Parents, 43 (11) p 38 - 42.
To access electronically, click here, log in using your Athens username and password and search via the CINAHL database.
[Article] Accountability and delegation explained
The focus of this article is to provide an understanding of accountability and delegation in the context of the roles of healthcare assistants (HCA's). It provides an overview of legal aspects, what accountablity means in everyday practice, the concept of safe delegation and an overview of responsibilities.
Mullen, C. 2014. Accountablity and delegation explained. British Journal of Healthcare Assistants, 8 (9) p 450-453.
To request a copy, click here, fill in form and return to library.
Mullen, C. 2014. Accountablity and delegation explained. British Journal of Healthcare Assistants, 8 (9) p 450-453.
To request a copy, click here, fill in form and return to library.
[Article] Charting the territory: symptoms and functional assessment in children with progressive non-curable disease
Children with progressive, non-curable genetic, metabolic or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms needs to begin at diagnosis, yet little is known about their patterns of symptoms and functional abilities. The study followed 275 children and their families in Canada and in the USA. The findings showed that the 3 most common symptoms for these children were pain, sleep problems and feeding difficulties. There was a pattern of under-reporting, and regardless of medication, pain, feeding and constipation symptoms were often frequent and distressing. Children with a G/J tube had a higher total number of symptoms and respiratory problems. The study showed that children experience multiple symptoms that have previously been documented individually, but not collectively. Effective interventions are needed to reduce their symptom burden.
Steele, R., Siden, H., Cadell, S., Davies, B., Andrews, G., Feichtinter, L. & Singh, M. 2014. Charting the territory: symptoms and functional assessment in children with progressive non-curable disease. Archives of Disease in Childhood, 99 (8) p 754 - 762
You can request this article from the library or download yourself using your Athens username and password.
To request a copy from the library click here, fill in form and return to library. To access electronically, click here, log in using your Athens username and password and search via the CINAHL database.
Steele, R., Siden, H., Cadell, S., Davies, B., Andrews, G., Feichtinter, L. & Singh, M. 2014. Charting the territory: symptoms and functional assessment in children with progressive non-curable disease. Archives of Disease in Childhood, 99 (8) p 754 - 762
You can request this article from the library or download yourself using your Athens username and password.
To request a copy from the library click here, fill in form and return to library. To access electronically, click here, log in using your Athens username and password and search via the CINAHL database.
[Article] Innovative approach to providing 24/7 palliative care for children
This study outlines an innovative hospice-based specialist nurse led service that provided 24/7 care for children with life-limiting conditions and their families. The operational objectives were: symptom management; open access to families and professionals; choice in place of care and after death; and collaboration to develop shared pathways and management plans. The service was audited through questionnaires completed by professionals and families. Findings demonstrated that the nursing team filled a critical gap and met it's pre-set standards. The article discusses the key elements that were put in place by the nursing team.
Maynard, L. & Lynn, D. 2014. Innovative approach to providing 24/7 palliative care for children. Nursing Children and Young People. 26 (6) p 27 - 34.
You can request this article from the library or download yourself using your Athens username and password.
To request a copy from the library click here, fill in form and return to library. To access electronically, click here, log in using your Athens username and password and search via the CINAHL database.
Maynard, L. & Lynn, D. 2014. Innovative approach to providing 24/7 palliative care for children. Nursing Children and Young People. 26 (6) p 27 - 34.
You can request this article from the library or download yourself using your Athens username and password.
To request a copy from the library click here, fill in form and return to library. To access electronically, click here, log in using your Athens username and password and search via the CINAHL database.
[Article] It's not just about pain: symptom management in palliative care
This article shifts the focus of symptom management in palliative care from pain to four common symptoms at end of life: nausea and vomiting, dyspnoea, respiratory secretions - "death rattle" and agitation, restlessness and delirium. Principles of prescribing, holistic assessment and communication, together with some pharmacology strategies are discussed.
Nunn, C. 2014. It's not just about pain: symptom management in palliative care. Nurse Prescribing 12 (7) p 338-344
To request a copy, click here, fill in form and return to library.
Nunn, C. 2014. It's not just about pain: symptom management in palliative care. Nurse Prescribing 12 (7) p 338-344
To request a copy, click here, fill in form and return to library.
[New book] Paediatric Neurology
Paediatric Neurology contains all the necessary guidance to investigate, diagnose and treat many of the common and rare neurological conditions in paediatrics. Each condition is covered by its own topic providing information on symptoms and signs, complications and emergency intervention. Other contents include: anatomical diagrams for quick and easy reference; expert guidance on drug usage in paediatric neurology; highlighted emergencies section; and, North American perspectives on management. Pocket size, 630 pages.
Forsythe, F. & Newton, R. 2014 Paediatric Neurology. Oxford Medical Publications.
EACH Library Members - email the library to request a loan.
Forsythe, F. & Newton, R. 2014 Paediatric Neurology. Oxford Medical Publications.
EACH Library Members - email the library to request a loan.
[Article] Promoting resilience among parents and caregivers of children with cancer
Promoting resilience is an aspect of psychosocial care that affects patients and whole-family well being. There is little consensus about how to define or promote resilience during and after pediatric cancer. The aim of this study were (1) to review the resilience literature in the pediatric cancer setting; (2) to ascertain caregiver reported perceptions of resilience; and (3) to develop an integrative model of fixed and mutable factors of resilience amongst family members, with the aim of promoting better study and promotion of resilience amongst bereaved families. Eighteen bereaved parents and family members took part, and interviews took place with each family. After coding for thematic analysis, an integrative comprehensive framework was then developed. Once validated, the proposed framework can serve as a model for clinicians and also facilitate the development of interventions aimed at promoting resilience in family members.
Rosenbery, A., Scott-Baker, K,. Lyrjala, K. L., Back, A. L. & Wolfe, J. 2013. Promoting resilience among parents and caregivers of children with cancer. Journal of Palliative Medicine, 16 (6) p 645-652.
To access electronically, click here, log in using your Athens username and password and search via the BNI database.
Rosenbery, A., Scott-Baker, K,. Lyrjala, K. L., Back, A. L. & Wolfe, J. 2013. Promoting resilience among parents and caregivers of children with cancer. Journal of Palliative Medicine, 16 (6) p 645-652.
To access electronically, click here, log in using your Athens username and password and search via the BNI database.
[Article] Bereaved caregivers as educators in pediatric palliative care: their experiences and impact
With the continuing growth of children's palliative care, there is an increasing need to develop effective training for health care professionals. Bereaved parents have participated in the training of health care professionals in an educational curriculum from the Initiative for Pediatric Palliative Care (IPPC) but their experience as educators has not been studied before. Nine bereaved parents and 11 health care professionals took part in this research. Major themes found were a sense of purpose for the parents and benefits and challenges for both parents and professionals. The experience for parents contributed to their meaning-making for both their children's lives and deaths. Parents and professionals identified mutual learning and increased mutual understanding, although for some health professionals it was felt that the presence of parents limited the openness of discussion. In conclusion, more benefits than burdens were experienced by both parents and health care professionals from participating in the training.
Adams, G., Green, A., Towe, S. & Huett, A. 2013. Bereaved caregivers as educators in pediatric palliative care: their experiences and impact. Journal of Palliative Medicine 16 (6) p 609-612.
To access electronically, click here, log in using your Athens username and password and search via the BNI database.
Adams, G., Green, A., Towe, S. & Huett, A. 2013. Bereaved caregivers as educators in pediatric palliative care: their experiences and impact. Journal of Palliative Medicine 16 (6) p 609-612.
To access electronically, click here, log in using your Athens username and password and search via the BNI database.
[Article] A relational understanding of sibling experiences of children with rare life-limiting conditions: a qualitative study
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings has not yet been described or documented. Eight siblings participated in the research. The data indicated four key themes which demonstrate impact on siblings. perception of the condition and symptoms, impact on daily life emotional consequences and ways of coping. Siblings often had considerable knowledge of the condition and took on important roles in symptom management. There was also a protecting of parents from an awareness of how much they knew, and an impact on relationships at school - being bullied by peers. The authors recommend the focus of intervention to support this group should address their emotional health and ways to overcome isolation and build connection with other siblings who share their unique experiences.
Malcolm, C., Gibson, F., Adams, S., Anderson, G. & Forbat, L. 2014. A relational understanding of sibling experiences of children with rare life-limiting conditions: a qualitative study. Journal of Child Health Care 18 (3) p 230-240
To request a copy, click here, fill in form and return to library.
Malcolm, C., Gibson, F., Adams, S., Anderson, G. & Forbat, L. 2014. A relational understanding of sibling experiences of children with rare life-limiting conditions: a qualitative study. Journal of Child Health Care 18 (3) p 230-240
To request a copy, click here, fill in form and return to library.
[Article] Giving hope to families in palliative care and implications for practice.
Caring for a dying child and the family is one of the greatest challenges in nursing. They way in which care is delivered will shape the experience they are about to face. Hope plays a crucial role in helping people cope. This article explores the concept and role of hope in children's palliative care, the ethical and legal issues that affect the reality of giving hope to families and the implications for practice.
Smith, H. 2014. Giving hope to families in palliative care and implications for practice. Nursing Children and Young People, 26 (5) p 21 - 25.
You can request this article from the library or download yourself using your Athens username and password.
To request a copy from the library click here, fill in form and return to library. To access electronically, click here, log in using your Athens username and password and search via the CINAHL database.
Smith, H. 2014. Giving hope to families in palliative care and implications for practice. Nursing Children and Young People, 26 (5) p 21 - 25.
You can request this article from the library or download yourself using your Athens username and password.
To request a copy from the library click here, fill in form and return to library. To access electronically, click here, log in using your Athens username and password and search via the CINAHL database.
[Article] Perinatal loss: application of loss and grief theories
Historically the death of a baby at or around the time of birth was not acknowledged and the loss was disenfranchised. However now it is recognised that this is one of the most significant life events a parent will face. This paper presents a brief review of some of the major loss and grief theories that have influenced caring for bereaved parents. Each theory is considered in terms of its application to maternity care and practices and ongoing bereavement care for couples experiencing perinatal loss.
Wilson, T. 2014. Perinatal loss: application of loss and grief theories. Grief Matters: the Australian Journal of Grief and Bereavement 17 (2) p 32-35
To request a copy, click here, fill in form and return to library.
Wilson, T. 2014. Perinatal loss: application of loss and grief theories. Grief Matters: the Australian Journal of Grief and Bereavement 17 (2) p 32-35
To request a copy, click here, fill in form and return to library.
[Article] Wound care considerations in neonates
Wound care management is a complex issue when caring for the neonate. Knowledge of the specific characteristics of neonatal skin and wound healing process is required when determining appropriate treatment and selecting wound care products.
Cousins, Y. 2014. Wound care considerations in neonates. Nursing Standard 28 (46) p 61-70
To access electronically, click here, log in using your Athens username and password and search via the CINAHL database.
Cousins, Y. 2014. Wound care considerations in neonates. Nursing Standard 28 (46) p 61-70
To access electronically, click here, log in using your Athens username and password and search via the CINAHL database.
[Article] Oral hygiene in dying patients with diminished consciousness
In terminally ill and dying patients, who are semi-conscious or unconscious, oral care is often based on historical anecdote rather than robust research evidence. This article will make recommendations for clinical practice to support nurses or healthcare assistants when carrying out oral care at end of life. It will consider the evidence for the effectiveness, appropriateness and patient acceptability of oral-cleansing substances, toothbrushes and foam swabs, petroleum jelly and water based gels for dry lips, topical saliva stimulants and saliva substitutes, as well as topical treatments for stomatitis.
Martin, S. 2014. Oral hygiene in dying patients with diminished consciousness. End of Life Care Journal. 4 (2) p 1 - 8
To request a copy, click here, fill in form and return to library.
Martin, S. 2014. Oral hygiene in dying patients with diminished consciousness. End of Life Care Journal. 4 (2) p 1 - 8
To request a copy, click here, fill in form and return to library.
[Article] Euthanasia: 10 myths
In this editorial piece by Professor Richard Hain, the author discusses his views on euthanasia following the recent extension of the Euthanasia Laws in Belgium to include children and young people.
Hain, R. 2014. Euthanasia: 10 myths. Archives of Disease in Childhood, 99 (9) p 798-880.
You can request this article from the library or download yourself using your Athens username and password. To request a copy from the library click here, fill in form and return to library. To access electronically, click here, log in using your Athens username and password and search via the CINAHL database.
Hain, R. 2014. Euthanasia: 10 myths. Archives of Disease in Childhood, 99 (9) p 798-880.
You can request this article from the library or download yourself using your Athens username and password. To request a copy from the library click here, fill in form and return to library. To access electronically, click here, log in using your Athens username and password and search via the CINAHL database.
[Article] Out of school lives of physically disabled children and young people in the UK
Currently there appears to be few opportunities and little evidence of physically disabled children and young people participating in mainstream social activities. Views and experiences were explored from the perspective of the service users and providers to assess current provision and to determine the need for future research into factors that may affect participation. Following the literature review, 3 main themes emerged: the need for social inclusion, out-of-school activities run by volunteers, and accessibility. The review suggests that children and young people wish to access and participation in out-of-school activities but encounter barriers. Further research is required in areas including parental influence, provision, training, and attitudes within the out-of-school activities.
Knight, K. H. & Porcellato, L. 2014. Out of school lives of physically disabled children and young people in the United Kingdom: a qualitative literature review. Journal of Child Health Care, 18 (3) p 275-285.
To request a copy, click here, fill in form and return to library.
Knight, K. H. & Porcellato, L. 2014. Out of school lives of physically disabled children and young people in the United Kingdom: a qualitative literature review. Journal of Child Health Care, 18 (3) p 275-285.
To request a copy, click here, fill in form and return to library.
[Article] Withdrawal of ventilatory support outside the intensive care unit: guidance for practice
In this paper the authors report on the experiences of a specialist paediatric palliative care team in a tertiary hospital collaborating with four different intensive care units in conducting out-of-hospital extubation. A retrospective 10 year case note review was carried out, 18 children (aged 2 weeks to 16 years) were considered. Transfer locations included home and hospices. Planning included development of symptom management plans and emergency care plans in the event of longer than anticipated survival. The authors identified the need for local written guidance supporting healthcare professionals planning, addressing a number of key phases in the process. The authors report on the challenges such discharges present, including the practical logistics, and legal considerations that must be addressed.
Laddie, J., Craig, F., Brierley, J., Kelly, P. & Bluebond-Langner, M. 2014. Withdrawal of ventilatory support outside the intensive care unit: guidance for practice. Archives of Disease in Childhood, (99) p 812-816.
You can request this article from the library or download yourself using your Athens username and password.
To request a copy from the library click here, fill in form and return to library. To access electronically, click here, log in using your Athens username and password and search via the CINAHL database.
Laddie, J., Craig, F., Brierley, J., Kelly, P. & Bluebond-Langner, M. 2014. Withdrawal of ventilatory support outside the intensive care unit: guidance for practice. Archives of Disease in Childhood, (99) p 812-816.
You can request this article from the library or download yourself using your Athens username and password.
To request a copy from the library click here, fill in form and return to library. To access electronically, click here, log in using your Athens username and password and search via the CINAHL database.
[Article] Journey from pediatric intensive care to palliative care
Approximately two-thirds of children and young people who die in paediatric intensive care units (PICU) do so following withdrawal of intensive care treatment. Most often, these children remain in PICU for end of life care. This study examined the process of referral over a 6 year period from a PICU to children's hospices for end of life care. During this time period, a total of 12 children were transferred, with a third of children transported to the hospice while still dependant on ventilatory support. All children were extubated by a PICU consultant within 90 minutes of arrival at the hospice. Overall, 8 children died sooner after transfer, with four children surviving beyond 2 weeks after transfer. The study suggests there is a feasible alternative location for withdrawal of intensive care and/or compassionate extubation and has led to the creation of a national care pathway to support extubation within a children's palliative care framework.
Gupta, N., Harrop, E., Lapwood, S. & Shefler, A. 2013. Journey from pediatric intensive care to palliative care. Journal of Palliative Medicine, 16 (4) p 397-401.
To access electronically, click here, log in using your Athens username and password and search via the BNI database.
Gupta, N., Harrop, E., Lapwood, S. & Shefler, A. 2013. Journey from pediatric intensive care to palliative care. Journal of Palliative Medicine, 16 (4) p 397-401.
To access electronically, click here, log in using your Athens username and password and search via the BNI database.
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