Report: Hidden lives: tackling the social exclusion of families caring for a seriously ill child

The report by Together for Short Lives looked at the social isolation experienced by families with a child with a life-limiting condition. 52 families took part in the survey, with most saying they often felt isolated and their social life had suffered considerably because of their child’s condition. The reasons cited for not going out socially ranged from exhaustion to a fear of being away from their child.  The report also revealed continued social isolation for bereaved families. The 2nd part of the report surveyed the general public and demonstrated that a third of the public would be uncomfortable interacting with families with children life-limiting conditions.  It also revealed a lack of awareness of children's palliative care services including hospices and what they can provide.  A number of recommendations are made.

Together for Short Lives, 2018.  Hidden lives: tackling the social exclusion of families caring for a seriously ill child.

Download report here

Article: Exploring the rewards and challenges - a qualitative study of a multi-disciplinary children's hospice care team

The research took place in a UK children's hospice, involving semi-structured interviews with 34 staff, and 3 focus groups with 17 staff.  Participants identified rewards and challenges related to the direct work with children and families, team dynamics, organisational structure, individual resilience and job motivation.  Many participants identified training needs to help them feel more confident and  also expressed concern about work related stress for themselves and colleagues which they felt unable to discuss at work.  The authors concluded opportunities for regular reflection to come together for support and learning are important and demonstrate an organisational commitment to staff wellbeing and development.

Taylor, J. and Aldridge, J. 2017.   Exploring the rewards and challenges of paediatric palliative care work - a qualitative study of a multi-disciplinary children's hospice care team.  BMC Palliative Care,

Available to download here

Article: How to undertake pulse oximetry

A good article from the British Journal of Healthcare Assistants, it looks at preparation and equipment, the procedure, factors that can negatively affect the readings, the rationale for taking the readings, the mechanism behind it, and oxygen saturation.    A useful article for new staff and those teaching more about oxygen saturation.

Peate, I. 2018.  Tests, scans and investigations: 13: How to undertake pulse oximetry.  British Journal of Healthcare Assistants, 12 (5) p 214 - 217.

For a copy of the article please fill out the online request form

Article: Anatomy and physiology: The brain

Another good article providing an overview of the brain and its functions.  The four lobes of the brain are discussed, as well as the three meningeal coverings.  A glossary of terms is included as well as a short quiz.

Peate, I. 2017.  Anatomy and Physiology 4: The brain.  British Journal of Healthcare Assistants, 11 (11) p 538 - 541.

For a copy of the article please fill out the online request form

Article: Anatomy and physiology: The gastrointestinal system

A good overview of the upper and lower gastrointestinal system, and useful for understanding the specific functions related to the duodenum, jejunum, ileum and large intestine.  It includes a glossary of terms and a short quiz designed to test understanding. 

Peate, I. 2018. Anatomy and Physiology 9: The gastrointestinal system.  British Journal of Healthcare Assistants. 12 (3) p 110 - 114.

For a copy of the article please fill out the online request form

Article: Anatomy and physiology: The respiratory system

From the British Journal of Healthcare Assistants, the article discusses the role and function of the respiratory system, looking at the role of the upper and lower respiratory tracts.  A good overview of the system and a useful article for staff undergoing non invasive ventilator training and wanting a good review.

Peate, I. 2017. Anatomy and physiology 10: the respiratory system.  British Journal of Healthcare Assistants, 12 (4) p 178 - 181.

For a copy of the article please fill out the online request form

Article: Constipation and bowel care

This article aims to enable the reader to be aware of how normal bowel function varies in individuals, how ageing, frailty, long term conditions and medication affect bowel function, how to promote normal bowel function and manage constipation.

Nazarko, L. 2018.  The healthcare assistant and bowel care.  British Journal of Healthcare Assistant, 12 (4) p 162 - 165.

For a copy of the article please fill out the online request form

Article: Essential practice for infection prevention and control: RCN guidance for nursing staff

A good article looking at the new RCN guidance on all aspects of infection prevention and control.  Very useful for staff wanting a good overview on all the key areas of practice or delivering training in this area.

Sunley, K. et al. 2018.  Essential practice for infection prevention and control: RCN guidance for nursing staff.  British Journal of Healthcare Assistants, 12 (1) p 28 - 32.

For a copy of the article please fill out the online request form

Article: Is pre-registration nursing or nursing associate training the right path for you?

This article aims to provide further insight into a number of training and pathways available to healthcare assistants, including the Certificate in Fundamental Care, undergoing training for pre-registration nursing or the nursing associate role.  It emphasises that for some HCA's, they already have a very valued role and may not wish to develop this further, while for other staff, these pathways are of interest.

Grainger, A. 2018.  Is pre-registration nursing or nursing associate training the right path for you.  British Journal of Health Care Assistants, 12 (4) p 182 - 185

For a copy of the article please fill out the online request form

Article: How to use the BNF and BNF for Children App

This article has been produced by the BNF team to help familiarize users with the new app, launched in July 2017.  It uses a case study to illustrate the app's functionality, as well as an introduction to the interface and how it can be used by prescribers, pharmacists and healthcare professionals.

McSherry C. & Prashar, P. 2017.  How to use the BNF and BNF for Children App.  The Pharmaceutical Journal, July 2017 (online version)

For a copy of the article please fill out the online request form

Guidance: A checklist to a good transition

Produced by Together for Short Lives, the check list has been designed for seriously ill young people to assess how well agencies involved in their education and care are working together to enable a smooth transition. In particular, the checklist focuses on enabling young people to play an active role in planning and decision-making, whilst acknowledging the ongoing role parents and carers will likely play in their care.

Together for Short Lives, 2018.  A checklist to a good transition.

Available to download here

Article: Cultivating resilience in families with a child with a life-limiting illness

This article looks at the resilience a family needs with a child with a life-limiting illness.  It looks at what resilience is - the successes and challenges, parental coping, child coping and strategies for developing resilient children with serious illnesses.  Written by the Director of Pediatric Palliative Care, at the University of Kansas, USA, and published in their e-journal for professionals and families.

Davis, K. 2018.  Cultivating resilience.  In:  CHiPPS E-Journal (Children's Project on Palliative/Hospice Services, E-Journal, May 2018.  Issue 51 pages 24 - 34.

For a copy of the article please fill out the online request form or download the full journal here

Article: Negotiating recovery in bereavement care practice in England: a qualitative study.

This paper explores how ‘recovery’ from grief is negotiated in bereavement care practice in England. What constitutes recovery from grief remains contested in bereavement research and practice. Debates in the literature concerning what constitutes recovery following bereavement are discussed before presenting interview data from bereavement counsellors and support workers to discover how practitioners negotiate recovery following bereavement in practice. The findings show mixed responses to the use of the term recovery and six areas that emerged from the research are discussed.

Pearce, C. 2018.  Negotiating recovery in bereavement care practice in England: a qualitative study.  Bereavement Care, 37 (1) p 6 - 16.

For a copy of the article please fill out the online request form

Book: Building continuing bonds for grieving and bereaved children

This book explains the importance of developing continuing bonds between children and loved ones in times of bereavement and offers practical ways in which these bonds may be nurtured through creative activities, memory making and personal storytelling.

Mallon, B. Building continuing bonds for grieving and bereaved children.  Jessica Kingsley.

Contact the library for a loan

Article: The need for bereavement support following perinatal loss: a review of the literature

The author reviews four articles published last year on the topic of bereavement support following perinatal loss.  The papers discuss complicated grief, the psychological, social and economic impact of stillbirth, memory making, and subsequent pregnancies following the death of a baby.  Three of the four papers  report on the need for more professional support, social recognition and opportunities for memory making.

Davidson, D. 2018. The need for bereavement support following perinatal loss: a review of the literature.  Bereavement Care, 37 (1) p 31-34

For a copy of the article please fill out the online request form

Book: Shattered by grief: picking up the peices to become WHOLE again

Written by a grief counsellor whose husband died unexpectedly, the book provides practical techniques and methods to process grief.  Readers are encouraged to engage with their grief through storytelling, self care, ritual, and honest reflection.  The book navigates the reader through the healing process while allowing them the freedom to explore their pain in a way that best fits their unique story.   The writer practices at a US Bereavement Centre.

Coenan, C. 2018.  Shattered by grief: picking up the pieces to become WHOLE again.  Jessica Kingsley Publisher.

Contact the library for a loan

Article: Risk and resilience factors related to parental bereavement following the death of a child with a life-limiting condition

Over the past few decades, bereavement research has focused primarily on a risk-based approach. In light of advances in the literature on resilience, the authors propose a Risk and Resilience Model of Parental Bereavement, thus endeavouring to give more holistic consideration to a range of potential influences on parental bereavement outcomes. The literature will be reviewed with regard to the role of: (i) loss-oriented stressors (e.g., circumstances surrounding the death and multiple losses); (ii) inter-personal factors (e.g., marital factors, social support, and religious practices); (iii) intra-personal factors (e.g., neuroticism, trait optimism, psychological flexibility, attachment style, and gender); and (iv) coping and appraisal, on parental bereavement outcomes. Challenges facing this area of research are discussed, and research and clinical implications considered

Jaaniste, T. et al. 2017. Risk and resilience factors related to parental bereavement following the death of a child with a life-limiting condition.  Children 4 (11) p 1 - 22

For a copy of the article please fill out the online request form

Article: Avoiding errors when administering injectable phenytoin to a child in status epilepticus

Errors often occur in the prescribing, preparing, administering and monitoring of intravenous phenytoin.  In 2016 an alert was issued by NHS Improvements.  Although not commonly given, this article explores why adverse events occur when it is used with the aim to ensure a safer and effective care environment when administered.

Douglass, C. 2018.  Avoiding errors when administering injectable phenytoin to a child in status epilepticus.  Nursing Children and Young People, 30 (1) p 35 - 38.

For a copy of the article please fill out the online request form

Article: Pain reporting and analgesia management in 270 children with progressive neurologic, metabolic or chromosomally based conditions with impairment of the central nervous system

To date, this prospective study is the largest study exploring pain in children with nonmalignant life-limiting diseases. The findings showed that pain in children with progressive neurologic diseases was common, under-recognised and undertreated. Analgesia management in this vulnerable group currently lacks standard assessment tools, consensus treatment guidelines and prospective randomized controlled trials.

Friedrichsdorf, S. et al. 2017. Pain reporting and analgesia management in 270 children with progressive neurologic, metabolic or chromosomally based conditions with impairment of the central nervous system: cross-sectional, baseline results from an observational, longitudinal study.   Journal of Pain Research, 2017.  Vol 10, p 1841 - 1851.

For a copy of the article please fill out the online request form

Article: "Total Pain" in children with severe neurological impairment

This article summarises the advances that have been made in the assessment and management of pain in children with severe neurological impairment.  It includes pain assessment tools and the authors own experiences working with infants, children and young people with palliative care needs in a UK palliative care service.

Warlow. T. & Hain, R. 2018.  "Total Pain" in children with severe neurological impairment.  Children. January 5 (1) online version.

For a copy of the article please fill out the online request form

Article: Pediatric palliative care for children with progressive non-malignant diseases.

This article describes the broad epidemiology of the non cancer conditions seen in children's palliative care.  It discusses terminology and classification, symptom management, emotional support, social issues, the disease trajectory and areas needing focused research.

Siden, H., 2018.  Pediatric palliative care for children with progressive non-malignant diseases.  Children.  5 (2) online version

For a copy of the article please fill out the online request form

Article: Interdisciplinary pediatric palliative care team involvement in compassionate extubation at home: from shared decision making to bereavement

Little is known about the role of pediatric palliative care (PPC) programs in providing support for home compassionate extubation (HCE) when families choose to spend their child's end of life at home. Two cases are presented that highlight the ways in which the involvement of PPC teams can help to make the option available, help ensure continuity of family-centered care between hospital and home, and promote the availability of psychosocial support for the child and their entire family, health care team members, and community.

Postier, A., Catrine, K. & Remke, S. 2018. Interdisciplinary pediatric palliative care team involvement in compassionate extubation at home: from shared decision making to bereavement.  Children, 5 (3) (online version)

For a copy of the article please fill out the online request form

Article: Feeding intolerance in children with severe impairment of the central nervous system: strategies for treatment and prevention

This comprehensive review looks at the gastro-intestinal symptoms that are recurrent and common in children with severe neurological impairment. It provides evidence based suggestions to guide empirical treatment trials. It includes a review of how the central nervous system contributes to the symptoms and suggestions how to moderate them.

Hauer, J. 2018. Feeding intolerance in children with severe impairment of the central nervous system: strategies for treatment and prevention. Children, 2018, 5 (1) online.

For a copy of the article please fill out the online request form

Article: Why is 24/7 community children's palliative care still not widely available?

The article discusses the 2017 report from Together for Short Lives looking at the shortage of community children's nurses (CCNs) and the third of English clinical commissioning groups who do not fund CCNs to provide palliative care for seriously ill children at night or weekends.   It summaries the findings of the report.

Sadler, C. 2018.  Why is 24/7 community children's palliative care still not widely available?  Nursing Children and Young People, 30 (2) p 8 - 9.

For a copy of the article please fill out the online request form

Article: How to improve team culture

Published in the British Journal of  Healthcare Assistants, this article re-prints the findings of the Royal College of Physicians who carried out a series of reports looking at how they could turn around the low morale and disengagement felt by junior doctors.  This article explores the principles that are essential to creating a positive team culture including celebrating success and acknowledging contributions; promoting openness and honesty, flattening hierarchy and challenging unprofessional behaviours.  It offers practical steps for improving team culture with limited resources.

Royal College of Physicians, 2018.  Team Culture.  British Journal of Health Care Assistants,12 (1) p 23 - 27

For a copy of the article please fill out the online request form

 

Article: Building effective teams

Published in the British Journal of  Healthcare Assistants, this article re-prints the findings of the Royal College of Physicians who carried out a series of reports looking at how they could turn around the low morale and disengagement felt by junior doctors.  It discusses what a team is, how it impacts on patient care, what makes a good team, and how good teams operate. 

Royal College of Physicians, 2017.  Building effective teams.  British Journal of Health Care Assistants, 11 (12) p 610 - 615.

For a copy of the article please fill out the online request form