A good overview of long term ventilation (LTV) in the UK. It covers the demographics, the different types of LTV, indications of why children require it, decision-making, the discharge process, home care packages, outcomes, ongoing dependence, transition and the future of LTV.
Brookes, I. Long-term ventilation. Paediatrics and Child Health, 29 (4) p 167 - 171.
Contact the library for a copy
Produced by the East Anglia's Children's Hospices (EACH) Library & Information Service - www.each.org.uk/library
Article: Advice on resolving disagreements with the families of critically ill children
A two page analysis and commentary on the Nuffield Council briefing on how nurses should manage cases where parents can come into conflict with decisions about life sustaining treatment. It includes a summary of four cases that hit the headlines in recent years.
Evans, N. 2019. Advice on resolving disagreements with the families of critically ill children. Nursing Children and Young People, 31 (4) p 8 - 9.
Contact the library for a copy
Evans, N. 2019. Advice on resolving disagreements with the families of critically ill children. Nursing Children and Young People, 31 (4) p 8 - 9.
Contact the library for a copy
Article: A review of Apps for calming, relaxation, and mindfulness interventions for pediataric palliative care patients
Mindfulness Apps and relaxation based apps have been noted for their positive effect and psychological well being of patients with chronic complex medical conditions. A US Children's Palliative care team searched smartphone application platforms for apps relevant to calming, relaxation and mindfulness interventions. 16 apps were assessed using a mobile application rating scale. All were available in English with four available in Spanish. Mood and sleep patterns were the main symptoms targeted by the apps. Details are provided in the article.
Weekly, T. et al. 2018. A review of Apps for calming, relaxation, and mindfulness interventions for paediatric palliative care patients. Children, 5 (16) epub.
Full text available here
Weekly, T. et al. 2018. A review of Apps for calming, relaxation, and mindfulness interventions for paediatric palliative care patients. Children, 5 (16) epub.
Full text available here
Article: Noisy upper respiratory tract secretions: pharmacological management
Written from an adult palliative care perspective, this short article reviews the practical management of noisy upper respiratory tract secretions.
Boland, J. & Boland, E. 2019. Noisy upper respiratory tract secretions: pharmacological management. BMJ Supportive & Palliative Care. Online.
Contact the library for a copy
Boland, J. & Boland, E. 2019. Noisy upper respiratory tract secretions: pharmacological management. BMJ Supportive & Palliative Care. Online.
Contact the library for a copy
Article: Professionals' views and experiences of paediatric advance care planning
This study explored health professionals' views and experience of paediatric advance care planning in 3 hospitals, community settings and a children's hospice in the North of England. Twenty one health care professionals participated. Two themes were generated from the study: the timing of conversations, including waiting for a relationship to form with the family, the introduction of parallel planning and avoiding a crisis situation. The second theme involved how to approach the topic and where to have the conversation. For all healthcare staff, the timing of when to start the conversation is an issue. The value of doing this in stages and the environment were noted as important. The study reported on suggestions to help the process.
Jack, B. et al. 2018. Professionals' views and experiences of paediatric advance care planning. BMC Palliative Care. online
View full text article here
Jack, B. et al. 2018. Professionals' views and experiences of paediatric advance care planning. BMC Palliative Care. online
View full text article here
Article: Clinical holding: ethical guidance for children's nurses working in the UK
There has been an increasing body of evidence published over the last 20 years to suggest the complex and challenging area of clinical holding is not always well managed, with mixed messages about consent, choice and practice. This article proposes an ethical framework allowing for increased engagement, empowerment and support on behalf of children and young people in relation to clinical holding decision making.
Page, A. et al. 2019. Clinical holding: ethical guidance for children's nurses working in the UK. Nursing Standard, 31 (4) p 28 - 33.
Contact the library for a copy
Page, A. et al. 2019. Clinical holding: ethical guidance for children's nurses working in the UK. Nursing Standard, 31 (4) p 28 - 33.
Contact the library for a copy
Article: Transcribing: what the new guidance states
From the Nursing Standard, an overview of the new Royal Pharmaceutical Society (RPS) and Royal College of Nursing (RCN) guidance on medicines management which replaced the now defunct NMC Medicines Management standards earlier this year. Focusing on transcribing, the article emphasises how the new guidance puts the onus on the employer to have policies and procedures in place for transcribing.
Griffiths, M. 2019. Transcribing: what the new guidance states. Nursing Standard, 34 (7) p 61 - 62.
Contact the library for a copy
Griffiths, M. 2019. Transcribing: what the new guidance states. Nursing Standard, 34 (7) p 61 - 62.
Contact the library for a copy
Article: Hospice and palliative care for children: converging stories
An interesting article about children's hospices and particularly useful for anyone working in a commissioning role. The article notes that the services hospices offer are highly valued by families but it is not always clear that hospices can be described as "specialists", making it difficult for hospices to negotiate appropriate commissioning arrangements with the statutory sector. The article provides a detailed look at the history of the hospice movement, the differing services they offer today, and then considers the future.
Hain, , R. 2019. Hospices and palliative care for children: converging stories. British Medical Bulletin, 130 (1) p 81 - 87.
Contact the library for a copy
Hain, , R. 2019. Hospices and palliative care for children: converging stories. British Medical Bulletin, 130 (1) p 81 - 87.
Contact the library for a copy
Use of a PEG for refractory epilepsy and medication refusal
This article describes the use of PEG placement for refractory epilepsy in children who refused oral medication. The study involved 10 children over a 9 year period. Parents reported back via a survey on seizure control and quality of life. All families reported an improvement in the ease of administering medications, nine children had a decrease in seizure frequency and eight reported a significant improvement in quality of life.
Howard, C. et al. 2019. Percutaneous endoscopic gastrostomy (PEG) for refractory epilepsy and medication refusal. Archives of Diseases in Childhood, 104 (7) p 690-692
Full article available via Athens, or contact the library for a copy
Howard, C. et al. 2019. Percutaneous endoscopic gastrostomy (PEG) for refractory epilepsy and medication refusal. Archives of Diseases in Childhood, 104 (7) p 690-692
Full article available via Athens, or contact the library for a copy
Article: Children's unmet palliative care needs: a scoping review of parents' perspective
An interesting article, identifying in the literature the views of parents and their support needs in children's palliative care. The most commonly reported unmet needs were respite services, communication and interpersonal skills of professionals, co-ordination and organisation of services and emotional and psychological support. The authors note a number of limitations to the review, including the fact that over half the papers reviewed were conducted over 10 years ago so it is likely that many of these services may well have changed.
Constantinou, G. et al. 2019. Children's unmet palliative care needs: a scoping review of parents' perspective. BMJ: Supportive and Palliative Care, epub.
Contact the library for a copy
Constantinou, G. et al. 2019. Children's unmet palliative care needs: a scoping review of parents' perspective. BMJ: Supportive and Palliative Care, epub.
Contact the library for a copy
Article: Bereaved parents' experiences of research participation
Designing and obtaining approval for studies involving bereaved parents can be difficult. The aim of this Australian study was to explore bereaved parents' experience of research participation. Nineteen parents whose children had died in an intensive care unit were contacted. Participants were asked to reflect on their experience of research participation with a focus on recruitment methods, timing of research contact, and the location of interviews. The findings showed that despite being emotionally difficult, parents' overall experience of research participation was positive. Their views provide insight to researches and research committees on the best way to conduct research with bereaved parents.
Butler, A. et al. 2019. Bereaved parents' experiences of research participation. BMC Palliative Care.
Access full text article here
Butler, A. et al. 2019. Bereaved parents' experiences of research participation. BMC Palliative Care.
Access full text article here
Article: Dilemmas of e-rostering old and new: towards intelligent systems?
By 2021 the NHS wants all clinical staff to be rostered electronically. Following on from an article published in 2014 on e-rostering, this article takes stock of progress made since then, and the new challenges still to be solved.
Drake, R. 2019. Dilemmas of e-rostering old and new: towards intelligent systems? Nursing Times, 115 (6) p 19 - 23.
Contact the library for a copy
Drake, R. 2019. Dilemmas of e-rostering old and new: towards intelligent systems? Nursing Times, 115 (6) p 19 - 23.
Contact the library for a copy
Article: A nurse-led initiative teaching patients to self-administer IV antibiotics
An article describing the nursing staff at Addenbrookes NHS Trust who set up the Out Patient Parenteral Antimicrobial Therapy (OPAT) service, teaching patients to self administer IV antibiotics at home. The article describes the background to the project, the teaching, videoing, colleague support and safety measures that were all required to get the service up and running.
Cole, E. 2019. A nurse-led initiative teaching patients to self-administer IV antibiotics. Nursing Standard, 34 (7) p 42 - 46.
Contact the library for a copy
Cole, E. 2019. A nurse-led initiative teaching patients to self-administer IV antibiotics. Nursing Standard, 34 (7) p 42 - 46.
Contact the library for a copy
Article: The usefulness and acceptability of a personal health record to children and young people living with a complex health condition
Communication between children and young people (CYP), their families and health professionals can be challenging. The use of a personal health record (PHR) is one potential strategy for improving communication by promoting CYP's health advocacy skills. The aim of this article is to identify the factors which help or hinder the use of PHR's with CYP living with a complex health condition.
Diffin, J. et al. 2019. The usefulness and acceptability of a personal health record to children and young people living with a complex health condition. Child, Care, Health and Development epub.
Contact the library for a copy
Diffin, J. et al. 2019. The usefulness and acceptability of a personal health record to children and young people living with a complex health condition. Child, Care, Health and Development epub.
Contact the library for a copy
Guidance: Returning to school: a teachers guide for pupils with brain tumours, during and after treatment
This guidance explains what a child or young person may be going through both medically and psychologically. It offers practical strategies for ensuring a supportive reintegration back to school. Suggestions are given for how teachers, assistants and SENCO's can provide sustained and targeted support for pupils who face extended treatments, devastating long term side effects or an uncertain future.
The Royal Marsden and Cerebra, 2019. Guidance: Returning to school: a teachers guide for pupils with brain tumours, during and after treatment. 3rd edition.
Available to download
The Royal Marsden and Cerebra, 2019. Guidance: Returning to school: a teachers guide for pupils with brain tumours, during and after treatment. 3rd edition.
Available to download
Web site: Stillbirth Stories
Stillbirth Stories is a UK online audio archive. It's a unique collection of interviews with parents and healthcare professionals talking about their experience of stillbirth. The web site consists of 22 interviews which can be listened to in full or as short clips, searchable by themes. Parental themes include: Being told your baby has died, Deciding about a post mortem and Pregnancy after loss. The healthcare staff themes include: Showing emotion, First experiences, and Talking to and supporting families.
Available at: http://stillbirthstories.org/
Article: Real experiences which increase empathy - using audio archive describing parents' and clinicians' experience of stillbirth
Perinatal death has an enduring effect on parents however healthcare professionals frequently report feeling unprepared to care for bereaved parents. This study evaluated parents' and professionals experiences of using an audio archive - www.stillbirthstories.org. For parents it was largely a helpful experience and for some reduced their feelings of loneliness and anxiety. All professionals found the archive helpful, stating it increased their empathy and understanding of parents emotions which improved their confidence that parents' needs could be met.
Beck, E. et al. 2019. Real experiences which increase empathy - using audio archive describing parents' and clinicians' experience of stillbirth. Bereavement Care, 38 (1) online.
Contact the Library for a copy
Contact the Library for a copy
Article: Nurses' perceptions of hospice care for deceased children following organ donation in hospice cool rooms
Following organ donation, bodies of children are generally cared for in hospital mortuaries or by funeral directors and their families are offered limited bereavement support. This article describes a partnership between an organ donation nursing team and a children's hospice where families were offered bereavement support from the hospice, and their child's body was cared for in a "cool room" after death. The research explored the perceptions and experiences of nurses' from both the hospice, and the organ donation team.
Tatterton, M. J. et al. A qualitative descriptive analysis of nurses' perceptions of hospice care for deceased children following organ donation in hospice cool rooms. International Journal of Palliative Nursing, 25 (4) p 166 - 175.
Contact the Library for a copy
Contact the Library for a copy
New book: Bringing up babies and young children who have very special needs
This book is about the support children and families might need. It describes the 3 essential elements of effective support: health, education and family support. It contrasts effective 21st century support with approaches that are out of date, and at worst insensitive and institutional.
Limbrick, P. 2019. Bringing up babies and young children who have very special needs. Interconnections.
Contact the library for a loan.
New Book: These precious little people
This short book has been written to support any child affected by the death of a baby during pregnancy or soon after birth. It's suitable for most ages with simple prose and beautiful illustrations.
Frankie Brunker and Gillian Gamble. 2019. These precious little people. 32 pages.
Frankie Brunker and Gillian Gamble. 2019. These precious little people. 32 pages.
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