Guidance: If I could i would.....Integrated person-centred planning for children, young people and families receiving palliative care: guidance and toolkit

Written to support the NICE End of life care guidance for neonates children and young people, this framework and selection of practical tools provides guidance on how to implement person centred end of life care planning.

Riley, R, Tyler, R. & Ramus, S. 2018.   Integrated person-centred planning for children, young people and families receiving palliative care: guidance and toolkit

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Book: Follow the child: planning and having the best end of life care for your child

Drawing on her family's own experiences and those of other parents facing the death of a child from illness or a life-limiting condition, Sacha Langton-Gilks explains the challenges, planning, and conversations that can be expected during this traumatic period. Practical advice such as how to work with the healthcare professionals, drawing up an Advance Care Plan, and how to move care into the home sit alongside observations of how such things worked in her own family's story.

Langton-Gilks, S. 2018.  Follow the child: planning and having the best end of life care for your child.  Jessica Kingsley Publishers.

This book is on order and hoping to be available from 8th March onwards

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Book: Children and young people's nursing skills at a glance

Aimed at both student nurses and newly qualified nurses, the book provides up to date evidence based information on a wide range of clinical skills required by children's nurses.  Each clinical skills is covered by a two page spread with colour illustrations and clear informative text.  The book is divided into 16 areas including:  principles of assessment, communication, drug calculations and administration, respiratory care, gastrointestinal care, and neurological assessment.

Gormley Fleming, E. & Martin D. 2018.  Children and Young People's Nursing Skills at a Glance.  Wiley.

This book is on order and expected to be available from 8th March 2018

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Article: Continuing bonds with the living: bereaved parents' narratives of their emotional relationship with their children

Following the death of a child, parents with surviving children face the task of navigating their own grief while continuing to parent.  In this study parents' told stories of emotional connection and disconnection with surviving children, influenced by the competing and potentially incompatible task of  'parenting' and grieving. The study demonstrated the need for healthcare staff to provide support to parents to explore contradicting emotions, and provide support to children to make sense of their experiences in relation to the parent-child relation.

Shanker, S. et al. 2017.   Continuing bonds with the living: bereaved parents' narratives of their emotional relationship with their children.  Bereavement Care, 36 (3) 103 - 107.

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Article: Off-label drug use without evidence makes for a difficult decision-making process: a case study

The off-label use of drugs in the UK is relatively common in palliative care, in part because a drug's original marketing authorisation hasn't allowed for new routes and emerging novel indications for use.  This case study explains the difficulties faced in complying with the wishes of a dying patient admitted to an adult hospice.

Freshwater, E., et al. 2017. Off-label drug use without evidence makes for a difficult decision-making process: a case study.  European Journal of Palliative Care. 24 (6) p 274-276.

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Report: The state of hospice services in the UK 2014 - 2017: Findings from the Care Quality Commission

Between October 2014 and January 2017, the CQC inspected over 200 hospice services in England. They found hospice care across England has the highest percentage of health and social care services that are rated outstanding (25%), and a further 70% are rated good.  They found that hospice leaders and frontline staff displayed a strong commitment to providing truly person-centred, compassionate care and support to people using their services, and their loved ones. They also developed strong relationships with other services in the area.   However, it was noted there is more to be done to make sure that everyone, regardless of their background or circumstances, can access high-quality end of life care.
View full report here

Article: Undertaking drug calculations for intravenous medicines and infusions

Drug calculations for intravenous (IV) medicines and infusions are more complex than those for oral medicines.  This article aims to enable nurses to review and enhance their competences in drug calculations for IV medicines.  It provides methods for undertaking IV drug calculations, using case studies to demonstrate these methods.

Brindley, J. 2018.   Undertaking drug calculations for intravenous medicines and infusions.  Nursing Standard, 32 (20) p 55 - 59.

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Book: Intravenous therapy administration: a practical guide

This practical book offers step-by-step guidance in how to administer intravenous fluids and medicines. It is written to be equally helpful for staff either practicing intravenous therapy and wish to refresh or update their knowledge or for staff learning the skill for the first time. Each chapter contains intended learning outcomes, clinical points for practice, and activities.

Brooks, N. 2017.  Intravenous therapy administration: a practical guide. M & K Allen.

Available for loan from the library

Book: A guide to Duchenne Muscular Dystrophy (DMD): information and advice for teenagers and parents

The book helps teachers and parents support children and young people with DMD with their education and transition into adulthood.  Going beyond physical management, particular focus is put on learning and behavioural issues, including speech delay, difficulty learning to read, as well as common associated conditions such as ADHD, autism, and OCD.

Hoskin, J. 2017.  A guide to Duchenne Muscular Dystrophy (DMD): information and advice for teenagers and parents.  Jessica Kingsley.

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Article: Music therapy in UK palliative and end of life care: a service evaluation

The current service provision and the role of music therapists in supporting individuals receiving palliative and end of life care (PEOLC) in the UK is currently unknown.  A survey was sent to the British Association of Music Therapists to identify the provision, role and perceived impact. Fifty respondents replied working predominantly in adult neurological, cancer and dementia settings. providing information on format of sessions, therapeutic approaches, therapeutic goals and impact.   Only a minority received statutory state funding for their role.  The survey respondents commonly cited improving quality of life as a goal of care.  The authors noted that a stronger evidence base could encourage more consistent funding for this role.

Graham-Wisener L, Watts G, Kirkwood J, et al.  Music therapy in UK palliative and end-of-life care: a service evaluation. 

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Article: Refining the guidance for sensory story telling with individuals with PMLD: a move towards improved research and practice.

The authors created a set of refined guidelines for sensory story sharing and tested the guidelines by following them with a new  group of sensory story recipients. Their results showed that following the refined guidelines successfully resulted in an increased positive responsiveness from participants. They also established the storytelling environment, and influence of the storyteller, can result in increased social interaction.

Grace, J. & Silva, 2017.  Refining the guidance for sensory story telling with individuals with PMLD: a move towards improved research and practice.  PMLD Link, Vol 29, No. 3, Issue 88. p 11 - 15.

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Article: It is what it is: mothers' experiences of providing bladder and bowel care to their daughters living with life-limiting conditions

The aim of this research was to establish the carers'/parents' experiences and support needs providing bladder and bowel care (B&BC) to a young adult.  The research involved 5 mothers providing this care to their daughters who were over the age of 18. While it was acknowledged as challenging by all participants, it was not a significant concern and seen as part of "it is what it is" with the associated themes of "whatever my daughter needs"; "Mum knows best"; and "coping with caring".  It was found it engendered closeness and opportunities for carers to provide better care than they felt professionals could.  B&BC was not a major issue when situated within the context of their daughter's disease.  The authors concluded carers' who wish to manage B&BC should be supported to do so.

Combes, S., Woodward, S. & Norton, C. 2017.  It is what it is: mothers' experiences of providing bladder and bowel care to their daughters living with life-limiting conditions.  International Journal of Palliative  Nursing, 23 (12) p 588 - 592.

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Manual: Muscular Dystrophy UK. Adaptions Manual: for children and adults with muscle-wasting conditions

This updated, 2nd edition guide includes examples and practical information about what is available to families as well as an outline of the process of making adaptions to a home.  The College of Occupational Therapists has reviewed and endorsed the guide, assuring it's quality.

Muscular Dystrophy UK.2018.  Adaptions Manual: for children and adults with muscle-wasting conditions

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