[Article] Communicating about prognosis: ethical responsibilities of pediatricians and parents

Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information.  However, parents often want this prognostic information because it underpins informed decision-making, especially near the end of life.   In addition prognostic disclosure can actually support hope and peace of mind among parents struggling to live with a child's illness.  Children, too may need to understand what is ahead to manage uncertainty and make plans. In this article the authors describe the ethical issues involved in disclosure and offers practical guidance for these conversations.

Mack, S. & Joffe, S. 2014. Communicating about prognosis: ethical responsibilities of pediatricians and parents.  Pediatrics, February 133, Supplement 1 s21 - 30

To request a copy, click here, fill in form and return to library.

[Article] Parental attitudes to children's pain and analgesic drugs in the United Kingdom

This study set out to explore parental attitude towards children's pain and analgesic drugs following surgery.  A convenience sample of 108 parents at one London Hospital completed a questionnaire. The results showed that although many parents had a good understanding of how children express pain, a substantial proportion of parents hold misconceptions regarding how children express pain and concerns in relation to analgesic drugs. This may impact on the quality of pain management and needs taking into account when preparing parents in this context.

Twycross, A., Williams, A., Bolland, R. & Sunderland, R. 2014. Parental attitudes to children's pain and analgesic drugs in the United Kingdom.  Journal of Child Health Care,  epub ahead of print 23 January 2014.

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[Article] Consent and capacity in children and young people

The issues surrounding consent and capacity in children and young people can be complex and are usually delicate. The process of making such an assessment depends on age, the maturity of the minor, the minor's best interests - weighed against the minor's views and those of the parents (or those with parental responsibility) and the nature of the treatment itself.  This article will look at the issues around assessment of capacity in children and young people and the role it plays in obtaining valid consent.

Palmer, R. & Gillespie, G. 2014. Consent and capacity in children and young people.  Archives of Disease in Childhood: Education & Practice. 99 p 2 - 7.

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[New Book] Managing pain in children: a clinical guide for nurses and healthcare professionals

Managing Pain in Children provides an introduction to the skills and expertise to manage children's pain effectively.  This fully updated 2nd edition includes anatomy and physiology, the latest policy guidelines surround pain management and ethical issues involved in managing children's pain.  It looks at the various pain assessment tools available, and non drug methods of pain are explored in relation to acute pain, chronic pain, procedural pain and end of life care.

Twycross, A., Dowden, S. & Stinson, J. 2014.  Managing pain in children: a clinical guide for nurses and healthcare professionals.  2nd edition.  Wiley Blackwell.

EACH Library Members - email the library to request a loan.

[Article] "Why does it happen like this?" Consulting with users and providers prior to an evaluation of services for children with life-limiting conditions and their families

Children with life-limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable.  The authors consulted with children, young people, their parents and local professionals to gain a more informed picture of issues facing them prior to preparing a bid to evaluate services in the area.  Multiple methods of consultation were used. An overarching theme from parents was "Why does it happen like this?"  Services did not seem designed to meet their needs.  Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families' needs.  The theme that linked families concerns with those of professionals was "assessing individual needs".  Two questions to be addressed in the evaluation are: 1) to what extent are services designed to meet the needs of children and families and 2) to what extent are children, young people and families consulted about what they need?.

Hunt, A., Brown, E., Coad, J., Staniszewska, S., Hackng, S., Chesworth, B. & Chambers, L. 2014."Why does it happen like this?" Consulting with users and providers prior to an evaluation of services for children with life-limiting conditions and their families.  Journal of Child Health Care, epub ahead of print, 2 January 2014.

To request a copy, click here, fill in form and return to library.

[Article] Death certification: changes in England and Wales

The processes around death certification are about to change in England and Wales.  This article discusses the changes in the law and explains what hospices need to do.

Perkins, P., Griffin, K., Tarling, L., Sumathipala, S. & Bell, B. 2014. Death certification: changes in England and Wales.  European Journal of Palliative Care, 21 (1) p 24 - 26

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[Article] How and when to refer a child for specialist paediatric palliative care

Specialist paediatric palliative care is a relatively new area of paediatrics, and the interface with other disciplines can occasionally pose challenges for referrals due to lack of information about the diverse services available.  Identifying those most likely to benefit from finite resources available can be a challenge, and healthcare professional's negative attitudes to palliative care have been further identified as a potentially modifiable barrier.  This article aims to clarify the role, identify who should be eligible for such care, describe the services available, and provide a tool for assessing some of the most challenging referrals.

Harrop, E. & Edwards, C. 2013.  How and when to refer a child for specialist paediatric palliative care.  Archives of Disease in Childhood, Education and Practice 98 p 202 - 208 doi:10.1136 

To request a copy, click here, fill in form and return to library.

[Article] "Not all my friends need to know": a qualitative study of teenage patients, privacy, and social media

This study aimed to understand how chronically ill teenagers manage their privacy on social media sites.  20 hospital patients between 12 and 18 were interviewed.  The results showed that most teenage patients do not disclose their personal information despite an almost pervasive use of Facebook.  Facebook was found to be a place where they could be a "regular" rather than a sick teenager, a place to stay up to date about their social life, not as a place to discuss their diagnosis and treatment.  The authors conclude that social media plays an important part in enabling teenagers to be "regular" and as an expression of their need for self-definition and self-protection.

van der Velden, M. & Eman, K. 2013. "Not all my friends need to know": a qualitative study of teenage patients, privacy, and social media.   JAMIA - Journal of the American Medical Informatics Association.  20 (1) p 16-24.

To request a copy, click here, fill in form and return to library.

[Article] "Going between worlds": travelling with children with complex needs

This study explored the experiences of 17 mothers' caring for their child with complex needs at home.  Using interviews and diaries, the research revealed that care is provided in an ongoing world of travel. Providing care when travelling is challenging, and all journeys require careful preparation and pre-emptive care.    The author concludes unnecessary travelling could be avoided by careful and co-ordinated service planning.

Nicholl, H. 2014.  "Going between worlds": travelling with children with complex needs.  Journal of Child Health Care, e-pub ahead of print November 21 2014.

To request a copy, click here, fill in form and return to library.

[Article] Family focused grief therapy: a versatile intervention in palliative care and bereavement.

Family focused grief therapy (FFGT) is a time-limited intervention that has been shown to be effective in aiding dysfunctional families through the promotion of family functioning, communication, cohesiveness, and conflict management.  This paper outlines the content of FFGT therapy and the discusses the provision of FFGT in the context of palliative care.

Masterson, M.P,  Kissane, D. W. & Schuler, T. 2013. Family focused grief therapy:  a versatile intervention in palliative care and bereavement.  Bereavement Care. 32(3) pp. 117 - 123

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[Electronic Article] The challenges faced when leaving a children's hospice

This article describes the difficulties experienced by Children's Hospices Association Scotland (CHAS) in assisting a young man in his transition from children's services to adult services and fulfil his wish to live independently with care staff to support him.

O'Connor, J. 2014.  The challenges faced when leaving a children's hospice. Nursing Children and Young People, 26 (1) p 8 - 10.

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 BNI database

[New Book] Staff support groups in the helping professions: principles, practice and pitfalls

This book looks at the use of support groups to foster emotional resilience, deal with potential conflict and support reflective practice.  The authors and contributors explore the influences that help and hinder the setting up and running of staff support groups, and attempt to counter the often negative reactions that the term "staff support" can evoke.  They demonstrate that support groups can be a valuable and sophisticated intervention that need careful preparation and skilful management to succeed, and in turn can not only benefit individuals but departments and organisations as a whole.

Hartley, P. & Kennard, D. 2009.  Staff support groups in the helping professions: principles, practice and pitfalls.  Routledge.

EACH Library Members - email the library to request a loan.

[New Book] The care of wounds: a guide for nurses

The Care of Wounds addresses all aspects of holistic wound management. The fourth edition continues to reflect current research and evidence–based practice, while incorporating the considerable developments which have occurred in wound care practice since the previous edition. It includes chapters on the physiology of wound healing, general principles of wound management, wound management products, and the management of patients with both acute and chronic wounds.

Dealey, C. 2012.  The care of wounds: a guide for nurses. 4th edition.  Wiley-Blackwell.

EACH Library Members - email the library to request a loan.

[New Book] The 50 best games for groups

To be used as warm ups, ice breakers or to address a specific need, the 50 best games for groups are easy to implement and can be adapted to the needs of specific groups

Griesbeck, J. 2009.  The 50 best games for groups.  Hinton House Publishers.

EACH Library Members - email the library to request a loan.

[New Book] 101 Activities for social and emotional resilience

This book provides practical and creative activities to explore such issues as regulating anxiety and tension, building self-confidence and self-esteem, coping with bullying and intimidation, and living with chaos or confusion in family life.  Each sector of the book deals with different factors that affect resilience.  Resources include worksheets, story-sheets and activities which are photocopiable and can be printed from the enclosed CD.

Jennings, S. 2013.  Activities for social and emotional resilience.  Hinton House Publishers.

EACH Library Members - email the library to request a loan.

[Article] Being a presence: the ways in which family support workers encompass, embrace, befriend, accompany and endure with families of life-limited children

Children with life-limiting and disabling conditions are surviving longer than previously, and many require palliative and supportive care, usually at home.  Home-based care can put family life under considerable strain.  Rainbows Trust Children's Charity aims to bridge gaps in services by providing family support workers (FSWs). This study used a range of methods to explore key aspects of the work of the FSWs with 55 families.   The study revealed how the FSWs became a presence in families' lives in 3 main ways: (1) encompassing and embracing through supporting needs and promoting resilience, (2) befriending and bonding through developing knowledge, trusting relationships and a sense of closeness, and (3) accompanying and enduring by "being with families" in different settings, situations and crises.  The study demonstrated the fundamental importance of workers who are able to provide aspects of support that is not usually provided by other services.

Carter, B., Edwards, M. & Hunt, A. 2014.  Being a presence: the ways in which family support workers encompass, embrace, befriend, accompany and endure with families of life-limited children.  Journal of Child Health Care, e-pub ahead of print Jan 23rd 2014.

To request a copy, click here, fill in form and return to library.