Article: Emergency management of tracheostomy problems in children

Children with tracheostomies can be more prone to respiratory infections and may have co-morbidities that increase hospital attendance.  This article provides a good overview of the basics - the reasons a child has one, the different parts of the tracheostomy tube, the different types, what should be checked on a daily basis and what to do in an emergency.

Ross, E. & Stephenson, K. 2019. Fifteen minute consultation: Emergency management of tracheostomy problems in children.   Archives of Diseases in Childhood: Education & Practice. 104 (4) p 189 - 194.

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Article: Buccal opioids for breakthrough pain in children with life-limiting conditions receiving end-of-life care

This paper reports on the advantages and disadvantages of using buccal opioids for breakthrough pain relief with a focus on diamorphine as the preferred opioid. The paper shares the clinical experiences from one UK organisation of care for children and young people at the end of their lives and contributes to the growing body of pharmacological evidence.

Norman, C. & Maynard, L. 2019. Buccal opioids for breakthrough pain in children with life-limiting conditions receiving end-of-life care.  International Journal of Palliative  Nursing, 25 (10) p 112-117.

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Article: Preventing medical device-related skin damage

Medical device-related skin damage, such as those caused by tubing, face masks and adhesive dressings can cause pain and increased risk of infection.  This article looks at what can be done to reduce skin damage, focusing primarily on the prevention of pressure ulcers.  It also looks at how healthcare staff can work collaboratively with patients/families, manufacturers and regulatory bodies to reduce the risk of device related skin damage in the future.

Liversedge, H. 2019.  Preventing medical device-related skin damage.  Nursing Standard, 34 (10) p 72-73

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Article: Parents' experiences of requests for organ and tissue donation: the value of asking

The aim of this Australian study was to explore to what extent organ and tissue donation (OTD) is discussed as part of end of life care, and the experiences of parents and healthcare staff.  Participants were recruited from a number of intensive care units and a children's hospice. The findings showed that of 21 parents, only 7 parents were asked about donation, four agreed and two donated.  41 healthcare staff were interviewed.  The study found a number of themes including the complexity of the donation process, the importance of asking, the difficulty of raising the topic, and parents assumptions when not asked.   A number of recommendations are made.

Darlington, A. 2019. Parents' experiences of requests for organ and tissue donation: the value of asking.  Archives of Diseases in Childhood, epub.

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Article: Not the whole story - considering children's spirituality and advance care planning

This article explores how developments in advance care planning and related documents are addressing issues of children's spirituality, an area which is often elusive and rarely explored in practice.  The authors aim to clarify their understanding of children's spirituality with a variety of examples and suggestions for hearing the voice of the child amid the needs of parents and professionals.

Clayton, M. & Aldridge, J. 2019.  Not the whole story - considering children's spirituality and advance care planning.  Archives of Diseases in Childhood: Education & Practice.  104 ;170-172.

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Article: Parental decision-making following a prenatal diagnosis that is lethal, life-limiting or has long term implications for the future child and family: a meta-synthesis of qualitative literature

A systematic review of the literature was carried out to explore the influencing factors for parents considering termination or continuation of pregnancy following identification of lethal, life-limiting or severely debilitating fetal abnormalities.  Twenty four papers were identified with 3 key themes identified under the headings of: 'All life is precious', hope for a positive outcome' and 'a life worth living'.  This comprehensive review revealed factors such as hope, morality and potential implications of their own and other's quality of life are all aspects health professionals should be aware of to enable facilitated supported decision making.

Blakeley, C et al. 2019.  Parental decision-making following a prenatal diagnosis that is lethal, life-limiting or has long term implications for the future child and family: a meta-synthesis of qualitative literature.  BMC Medical Ethics.

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Article: Management of dystonia in paediatric palliative care

This short article looked at the management of dystonia, comparing the management of it by neurology services, and the management by children's palliative care.  109 children at the Evelina Children's Hospital were reviewed. The paper describes the different clinical approaches that were found and recommendations for future practice.

Slater, T. et al. 2019.   Management of dystonia in paediatric palliative care.  Archives of Diseases in Childhood, 104 (1) p 102 - 103.

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Article: Intranasal fentanyl for respiratory distress in children and adolescents with life-limiting conditions

This German study looked at the effectiveness of intranasal fentanyl for the treatment of acute attacks of respiratory distress (AARD). 16 children (from 0.5 - 18.6 years) with various life-limiting conditions were included in the study and a total of 70 AARDs were analysed.  The study concluded intranasal fentanyl may be a safe and effective treatment to use, however larger sample sizes and a control group is needed to validate the findings.

Pieper, L. 2018.. Article: Intranasal fentanyl for respiratory distress in children and adolescents with life-limiting conditions.  BMC Palliative Care.

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Article: Barriers to prescribing cannabis-based medicines

An article providing a good overview of the cannabis based products available to prescribe. It includes the products, licensing information, indication, controlled drug status and who can prescribe them.  It includes areas to be cautious of, barriers to prescribing and refers to the new NICE guidance expected later this month.

Dowden, A. 2019.  Barriers to prescribing cannabis-based medicines.  Prescriber, July issue, p17 - 21.

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Article: Approaches to community-based palliative care provision by children's hospices in the UK

This study aimed to determine the approaches taken by children's hospices across the UK in meeting the planned and unplanned needs of children and their families who receive palliative care at home.   An online survey was sent to all children's hospices. Responses were received from 14 (26%) of hospices. The survey revealed 1,618 children and their families were being cared for by these hospices, of whom 825 received care at home. Care provided at home was either short break care or responsive palliative nursing, consisting of advance care planning, anticipatory prescribing and active symptom control.  Out of hours care was usually offered in the form of telephone support.  The study showed models of community care are evolving to include nurses practicing at specialist and advanced levels allowing more children to be cared for at home.

Tatterton, M. 2019.  Approaches to community-based palliative care provision by children's hospices in the UK.  Nursing Children and Young People, 31 (5) p 42-48.

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Report : The emotional impact of parenting a disabled child

This report was drawn together from a survey of 109 parents in the UK with a disabled child.  The survey revealed a range of emotions: anxiety, frustration, anger, guilt and jealousy.  It also revealed the growth some parents had experienced, the pride in their child  and a greater understanding and empathy.  A recurrent them was that there were positive and negative feelings, often within the same day.  The report includes a summary of the key points and the quantitative data.

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Web site: Affinity Hub - emotional support for parents of children with special needs

Affinity Hub is managed by Joanna Griffiths, chartered counselling psychologist and mother of a disabled son.  The aim of the web site is to provide a virtual home for parents and carers to realise they are not alone, with many other families going through similar situations.  Two pages that are particularly worth recommending are the Words of Wisdom pages - feedback and advice from parents, and the Feelings pages. 

Article: Cerebral Palsy: not always what it seems

Cerebral palsy is not a disease but a neurological syndrome, a combination of symptoms and signs, some of which occur in neurodegenerative or metabolic disorders.  This article provides guidance on the causes of familial cerebral palsy, the more common 30  disorders which may be misdiagnosed as cerebral palsy and the signs and symptoms that go along with these conditions.

Appleton, R. E. & Gupta, R.  2018.  Cerebral Palsy: not always what it seems. Archives of Diseases in Childhood. 104 p 809-814.

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Article: Parallel planning and the paediatric critical care patient

A growing number of children with life-limiting conditions are being cared for in paediatric critical care settings.  This article explores the challenges and potential benefits of parallel planning and advance care pans and suggests strategies for their improved use in the future.

Sidgwick, P. et al. 2019.  Parallel planning and the paediatric critical care patient.  Archives of Diseases in Childhood, 104 p 994-997

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Article: A transition toolkit for Duchenne Muscular Dystrophy

The care of individuals with Duchenne Muscular Dystrophy (DMD) now extends into adulthood.  This US guidance looks at transition planning relating to health, education, steps towards working vocations, personal care, accessing the home and community and the importance of relationships with others.  The article provides a comprehensive checklist of things to be considered, discussed and planned during transition.

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Guidance: Restrictive physical interventions and the clinical holding of children and young people

This updated Royal College of Nursing guidance sets out children’s and young people’s rights concerning restrictive physical intervention and clinical holding in health care settings within a legal, moral and ethical framework.

Royal College of Nursing, 2019.  Restrictive physical interventions and the clinical holding of children and young people: guidance for nursing staff.  RCN.

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Article: Coproduction and coproducing research with children and their parents.

This article is part of a series on practical research ethics and concentrates on coproduction research.  It notes that research funders are increasingly asking for this type of research.  It provides a good over as to what it is, why it's being done, discusses what children are capable of doing, the characteristics of coproduced research, and how to make it a reality.

Liabo, K. & Roberts, H. 2019.  Coproduction and coproducing research with children and their parents.  Archives of Diseases in Childhood. Published online May 8 2019.

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