Providing Support at Home for Children and Young People Who Have Complex Health Needs

211 Pages·2008·1.824 MB·English

by  Jaqui Hewitt?Taylor(auth.)

Providing Support at Home
for Children and Young
People Who Have Complex
Health Needs
Providing Support at Home
for Children and Young
People Who Have Complex
Health Needs
Jaqui Hewitt-Taylor
Bournemouth University
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LibraryofCongressCataloging-in-PublicationData:
Hewitt-Taylor,Jaqui.
Providingsupportathomeforchildrenandyoungpeoplewhohavecomplexhealthneeds/
JaquiHewitt-Taylor.
p.;cm.
Includesbibliographicalreferences.
ISBN978-0-470-51731-4(cloth:alk.paper)
1.Chronicallyillchildren–Homecare. 2.Childrenwithdisabilities–Homecare. 3.Youngadultswith
disabilities–Homecare. I.Title.
[DNLM: 1.HomeCareServices. 2.Adolescent. 3.Child. 4.ChronicDisease. 5.Nurse-Patient
Relations. 6.Professional-FamilyRelations. WY115H611p2008]
RJ380.H494 2008
618.92–dc22
2007043601
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ISBN9780470517314
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Contents
Preface xi
1 ChildrenandYoungPeoplewhohaveComplexandContinuing
HealthNeeds 1
Definitions 1
ProvidingCareatHome 4
EconomicIssues 6
TheBestOptionforIndividuals 7
AchievingHomeCare 8
2 PuttingtheChildorYoungPersonFirst 10
QualityofLife 11
TheChildorYoungPerson’sPriorities,PreferencesandChoices 12
Communication 14
Play 18
SocialOpportunitiesandLeisureActivities 21
Education 22
TheRighttoPrivacy 26
DevelopingIndependence 27
Summary 28
3 TheChildorYoungPersonasaPartoftheFamily 29
Family 29
Parenting 30
BeingtheParentofaChildwhohasComplexNeeds 32
ExpertParents 35
TheImpactofhavingaChildwhohasComplexNeeds 37
SocialOpportunities 40
EmploymentandFinances 42
RelationshipsBetweenParents 43
EffectsontheFamily 44
viii Contents
TheImpactoftheChild’sNeedsontheirSiblings 47
TheImpactoftheChild’sNeedsontheExtendedFamily 49
Summary 50
4 WorkingwithParents 52
Negotiation 52
BuildingRelationships 54
Respect 56
RespectforParents’ResponsibilityfortheirChild 57
Trust 58
BoundariesinProfessionalRelationships 60
WorkingwithParentswhoareExperts 63
EnablingandSupportingParentstoAccessandAcceptSupport 66
UnderstandingandWorkingwiththeFamily’sExpectations 67
Summary 69
5 WorkingintheFamilyHome 70
BeingaVisitorinOne’sownWorkplace 70
IntrusionVersusSupport 71
StaffSafetyandWell-beingintheWorkplace 76
Confidentiality 79
Summary 81
6 SupportingYoungPeople 83
DevelopingIndependence 83
RiskTaking 86
DevelopingPeerRelationships 89
ImageandIdentity 90
SexualityandSexualExpression 91
FurtherEducation 94
PreparingforEmployment 95
TransitiontoAdultServices 96
Summary 99
7 Grief,LossandBereavement 100
GriefandLossforChildrenandYoungPeople 100
SourcesofLossforParents 104
SourcesofLossforotherFamilyMembers 109
TheoriesofGrief,LossandBereavement 110
ChildrenandYoungPeople’sConceptsofDeath 112
Contents ix
FamiliesLivingwithLoss 115
SupportingFamilieswhoExperienceLoss 117
LossforHealthcareStaff 119
Summary 120
8 ChoicesandRights 121
Children’sRights 121
Autonomy 122
AutonomyandHealthcare 125
CompetenceinDecisionMaking 127
Consent 129
Empowerment 131
Advocacy 133
ChildProtection 136
EqualityandDisabilityRights 138
Summary 139
9 EthicalIssuesInvolvedinSupportingChildren,YoungPeople
andtheirFamilies 141
MoralsandEthics 142
PromotingHealth 142
EthicalPrinciples 145
DutiesofHealthcareProfessionals 151
Fidelity 154
Responsibility 154
Summary 155
10 OrganisationalIssues 157
Support 157
DeterminingwhatisNeeded 159
Joined-upAssessment 161
CollaborativeWorking 162
TheKeyWorker 166
OrganisingCarePackages 167
IndependentFundingOptions 169
Short-BreakServices 170
Summary 172
11 WorkingwithChildren,YoungPeopleandTheirFamilies 174
SeeingtheChildorYoungPersonFirst 174
TheChildorYoungPersonasaPartoftheirFamily 176
x Contents
WorkingintheFamilyHome 177
SupportingYoungPeople 178
DecisionMakingandFiniteResources 179
Appendix:UsefulResources 181
References 185
Index 199
Preface
Childrenandyoungpeoplewhoaredescribedashavingcomplexandcontin-
uinghealthneedshaveavarietyofhealthrelatedneeds.Technicalcompetence
andknowledgeofthechild’sconditionareessentialpartsofprovidingthem
with support. However, children and their families also highly value sup-
port that shows respect for them as individuals and as families, and which
demonstratessomeinsightintotheirneedsaspeople,ratherthanastasksto
becompleted(Hewitt-Taylor2007).
With this in mind, this book explores some general aspects of supporting
children who have complex and continuing health needs and their families
intheirownhomes,ratherthandiscussingspecificdisorders,diseases,treat-
mentsorinterventions.Thechaptersfocuson:seeingthechildoryoungperson
first and foremost as a child or young person; working with and seeing the
familyasawholebutindividualunit;workingcloselywithparents;working
inthefamilyhome;supportingyoungpeoplewhohavecomplexandcontin-
uing health needs; understanding grief and loss in relation to children and
youngpeoplewhohavecomplexandcontinuinghealthneeds;respectingthe
rightsofchildrenandyoungpeoplewhohavecomplexhealthneeds;theeth-
icalissuesinvolvedinsupportingchildren,youngpeopleandtheirfamilies;
andtheorganisationalissuesinvolvedinserviceprovision.Casestudiesare
usedtoillustrateandapplythepointswhichareraised.
Chapter 1
Children and Young People who have
Complex and Continuing Health Needs
Developmentsinbiomedicine,technologyandsupportivecaremeanthatlife-
threateningconditionsandeventswhichwerepreviouslyconsideredincom-
patiblewithlife(suchasextremelyprematurebirth)cannowbesurvived.At
thesametime,childrenwhohaveprogressivediseases(forexamplemuscular
dystrophy)oftenhaveincreasedlifeexpectancy(Noyes2006a).
Thisabilitytosaveandsustainlifemeansthatthereareanincreasingnum-
ber of children and young people who require medical or technical support
formanyyears,sometimesfortheirentirelife,tomaintainoroptimisetheir
health.Manychildrenandyoungpeopleinthissituationalsoneedsubstantial
andongoingcaretoavertdeathortopreventtheirdisabilitiesfromworsen-
ing(Nessa2004).Suchchildrenandyoungpeoplearesometimesdescribedas
havinghealthneedsthatarecomplexandcontinuing(DepartmentofHealth
2004a). As children who have complex and continuing health needs are in-
creasingly living into adulthood, a population of young people and adults
whohavethistypeofneedisnowalsoemerging(Condliffe2006;Shribman
2007).
DEFINITIONS
Theincreasingnumberofchildrenandyoungpeoplewhohavecomplexand
continuinghealthneedsisoftenreferredto,butthereisnoabsoluteconsen-
susonwhatconstitute‘complexandcontinuinghealthneeds’(Stalkeretal.
2003).Thephrase‘childrenwithcomplexneeds’isoftenusedtorefertothis
group.However,thiscanbeconfusing,asthetermdoesnotrelateexclusively
tothosewithcomplexandcontinuinghealthneeds.Itincludeschildrenand
youngpeoplewithavarietyofcomplexneeds:thosewhoarethesubjectof
child protection plans; looked after children; children who are leaving care