000			04241cam a2200505Mi 4500
001			on1019662315
003			OCoLC
005			20220920105404.0
006			m o d
007			cr |n|---|||||
008			180113s2018 enk o 000 0 eng d
015			_aGBB7L3363 _2bnb
016	7		_a018593278 _2Uk
020			_a178450680X
020			_a9781784506803 _q(electronic bk.)
020			_a9781785923463 (paperback)
029	1		_aAU@ _b000062621919
029	1		_aUKMGB _b018593278
035			_a(OCoLC)1019662315 _z(OCoLC)1019658613 _z(OCoLC)1019722188
037			_aJessicaKingsleyPublishers9781784506803 _bIngram Content Group
037			_a09A4599B-4249-45F2-9407-F52FD59C2DDE _bOverDrive, Inc. _nhttp://www.overdrive.com
040			_aEBLCP _beng _epn _cEBLCP _dYDX _dUAB _dMERUC _dIDB _dOCLCQ _dOCLCO _dLVT _dOCLCF _dUKAHL _dUKMGB _dN$T _dTEFOD _dOCLCO
100	1		_aLangton-Gilks, Sacha. _eauthor
245	1	0	_aFollow the child : _bplanning and having the best end of life care for your child / _cSacha Langton-Gilks
260			_aLondon : _bJessica Kingsley Publishers, _c2018.
300			_a234 pages : _billustrations ; _c22 cm
520	8		_aA child or young person with a terminal illness needs the best possible end of life care plan. This work will help guide families through the entire process, giving information about available support, what questions you should ask and how to care for your child at home. _bDrawing 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 tender observations of how such things worked in her own family's story. The book also includes a template person-centred planning document, developed by experts in the field. Empowering and reassuring, this book will help families plan and ensure the best possible end-of-life care for a child or young person. Grief in this book is specifically anticipatory grief, that is, loss before death, and therefore not intended to assist those who have lost a child. The author is not religious and her ambiguity about faith will be familiar to many families living in Ireland: "my family are in various stages of lapsed Church of England (Protestant). We lamely uphold the broad outlines of the Christian year and both the state primary and secondary schools, where our children attend and I teach, are Church of England." This book documents a British experience (with some input from a parent from the US, who did make faith based decisions, so these chapters may be particularly helpful to readers who practice a faith), so there may be some discrepancies between services as discussed and services available in Ireland. The author's son died at home, which was his choice, but the book features accounts from parents whose children died in hospitals and hospices are also included. His death was cancer-related, but includes accounts from other parents whose children had a variety of diagnoses: Dandy-Walker malformation/syndrome, cerebral palsy, seizures, musculoskeletal and congenital abnormalities, metachromatic leukodystrophy, Krabbe's leukodystrophy, a child who was deprived of oxygen at birth, and parents who lost a baby. Audience: Adult caregivers, Professionals
588	0		_aPrint version record.
650		0	_aChildren and death.
650		0	_aTerminal care.
650		1	_aGrief _9443
653			_aLoss
653			_aDeath of a chlid
653			_aDying
653			_aDisability
655		4	_aElectronic books.
942			_2ddc _cG
999			_c163 _d163