Accompaniment of minors during health care procedures

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www.analesdepediatria.org

SPANISH ASSOCIATION OF PAEDIATRICS

Accompaniment of minors during health care procedures ^夽

Felipe Verjano Sánchez

^a^,∗

, José Antonio Salinas Sanz

^b

, Ester Barrios Miras

^c

, Inés del Río Pastoriza

^d

, I˜ nigo Noriega Echevarría

^e^,^f

, María Jesús Alijas Merillas

^g

, Francisco Moreno Madrid

^h

, María José Peláez Cantero

ⁱ

, Juan Pablo García I˜ niguez

^j

, Isolina Ria˜ no Galán

^k

, on behalf of the Comité de Bioética de la Asociación Espa˜ nola de Pediatría

aÁreaintegradadePediatríayNeonatología,HospitalUniversitarioCostadelSol,Marbella,Spain

bServicioOnco-HematologíaInfantil,HospitalUniversitarioSonEspases,Palma,Spain

cCentrodeSaludMejoradadelCampo,Madrid,Spain

dCentrodeSaludArcade,Pontevedra,Spain

eHospitalUniversitariodelNi˜noJesús,Madrid,Spain

fUniversidadInternacionaldeLaRioja,LaRioja,Spain

gClínicaUniversitariadeNavarra,Navarra,Spain

hServicioPediatría,HospitalClínicoSanCecilio,Granada,Spain

iUnidaddeCrónicosComplejosyCuidadosPaliativos,HospitalRegionalUniversitario,Málaga,Spain

jUnidadCuidadosIntensivosPediátricos,HospitalUniversitarioMiguelServet,Zaragoza,Spain

kÁreaGestiónClínicaPediatría,HospitalUniversitarioCentral,Asturias,Spain

Received27June2023;accepted8September2023

KEYWORDS Accompaniment;

Healthcareethics;

Families;

Minors;

Children;

Cardiopulmonary resuscitation;

Techniques

Abstract Inclinicalpractice,itisnotraretoencountersituationsinwhichparentsandfamilies areaskedtoleavethechildalonewiththehealthcareteaminroomsfullofdevicesthroughout theperformanceofprocedures,whichattimesmaygiverisenotonlytoconﬂictsbut,more importantly,emotionalsequelaeinchildrenoradolescents.

We conducted anarrativereview oftheliterature bysearching thedigital library ofthe publichealthcaresystemofAndalusiaforarticlesconcerningtheexperiencesofhealthcare professionalsandfamilieswiththeaccompanimentofpaediatricpatientsduringhealthcare procedures.WerestrictedthesearchtostudiespublishedinSpanishorEnglishandconducted inhumans.

DOIoforiginalarticle:https://doi.org/10.1016/j.anpedi.2023.09.009

夽 ThisarticlehasbeenendorsedbytheSociedadEspañoladeNeonatología,SociedadEspañoladeCuidadosPaliativosdePediatría,Sociedad EspañoladeUrgenciasdePediatría,SociedadEspañoladeHematologíayOncologíadePediatría,SociedadEspañoladeCuidadosIntensivos dePediatría,SociedadEspañoladePediatríaSocialandSociedadEspañoladePediatríaHospitalaria.

∗Correspondingauthor.

E-mailaddress:[email protected](F.VerjanoSánchez).

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Thereviewevincedtheneedtohumanisecareinordertoimprovecarequality.Theneedto accompanyminors issupportedby theevidencefrom worksthathaveanalysed thefactors involvedinthepersistenceofthesebehavioursandattitudesinbothprofessionalsandparents.

Weconsideritnecessarytodevelopinstitutionalpoliciesandappointmediatorstocompilethe statementsofdifferentnationalandinternationalsocieties,takingintoaccountlegalaspects but,aboveall,thepertinentvaluesfromahealthcareethicsperspective,andinpursuitofthe bestinterestsofthechild.

4.0/).

PALABRASCLAVE Acompa˜namiento;

Éticadelcuidado;

Familiares;

Menor;

Ni˜nos;

Reanimación cardiopulmonar;

Técnicas

Acompa˜namientoalosmenoresdurantelosprocedimientosasistenciales

Resumen Enlaprácticaclínica noesinfrecuenteobservarsituaciones asistencialesenlos cuales se invitaa progenitoresy familiaadejar alos menoresen soledad junto al equipo asistencialenestanciasrepletasdetecnologíadurantelarealizacióndeprocedimientos,dando lugarenocasionesaconﬂictos,perosobretodoconconsecuenciasemocionalesenlosni˜noso adolescentes.

Seharealizadounarevisiónnarrativadela literaturamediantebúsquedabibliográfica en labibliotecavirtualdelsistemasanitariopúblicodeAndalucíasiendoloscriteriosdeinclusión utilizados,estudiosqueconciernenalasexperienciasdeprofesionalessanitariosyfamiliares sobre elacompañamientodela poblaciónpediátricaenlosprocedimientosasistenciales.El resultadodelabúsquedaselimitóaestudiosenespañol,inglésyenhumanos.

Estarevisión,ponedemanifiestolanecesidaddehumanizarlaasistenciasanitariaparamejo- rarla calidaddela atención.Sejustificalanecesidaddeacompañamiento delosmenores, a travésde trabajos que hananalizado losfactoresque intervienen enla permanenciade estas conductasy actitudestanto porprofesionales como padres. Serecomiendala necesi- daddepolíticasinstitucionalesyfigurasmediadorasquerecojanlasdeclaracionesdealgunas sociedadesnacionaleseinternacionalesteniendoencuentaaspectoslegalesperosobretodo losvaloresenjuegodesdeunaéticadelcuidadoybúsquedadelinteréssuperiordelmenor.

Introduction

‘‘Wouldyoustepoutsideforamoment,please?’’

Thisrequest,seeminglysimpleandpolite,carriesdifferent meaningsandsentimentsandelicitsfeelingsthat,attimes, maygiverise toconﬂict.It is aquestion that we maybe familiarwith,havinghearditsaid,orevenaddresseditour- selves,toparentsorrelatives(inotherwords,thegroupof individualscloselyrelatedtothechild),inthemanagement ofachildwithhealthcareneeds.

Until recently, this was perceived as appropriate behaviourwithinakindandpoliterelationshipinthecontext ofshareddecision-makingandcommunication.

Just a few years ago, nobody questioned this prompt.

Parentspreferrednottowitnessthe‘‘badexperience’’ of thechildandpaediatriciansandcareteamsfeltateasein performingavarietyofinterventions.¹

Today,aswepursuethehumanizationofcaredeliveryto improvethequalityofcare,isthissituationstillacceptable?

Whathappensifparentsasktoremainwiththechild?Whatif thechilddoesnotwanttobeleft,ontheagreedimposition ofothers,alonewiththehealthcareteaminaroomfullof equipmentthatfeelscoldandunfriendly?

Toanswer thesequestions,theCommitteeonBioethics of the Asociación Espa˜nola de Pediatría (AEP, Spanish Association of Paediatrics), after reviewing the literature on this issue and its evolution through time, consid- eredthe possibilityof developingrecommendations about the need of children and adolescentsto be accompanied during the performance of tests or procedures in their management, and the need for institutional policies and mediators to promote the development of competencies and skills for affective and effective communication, as proposed by the statements of different domestic and international organizations, to facilitate the exchange of information and shared decision-making with a creative and innovative approach, an opportunity for humaniz- ing care in different clinical scenarios and health care procedures.²

To this end, in a deliberative process, we sought to answertheproposedquestionsthroughtheanalysisofthe events that have been observed and reﬂected in different studies and the value conﬂicts that emerged, with the ultimate purpose of developing guidance adhering to the greatest possible extent to the principles of the ethics of care and in pursuit of the bestinterests of the child.

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Methods

Design

Weconductedanarrativereviewoftheliteraturebysearch- ing the virtual library database of the public health care systemofAndalusia,Spain.

Sample

Inclusion andexclusion criteria, for instance: selection of studiesconcerningexperiencesofhealthcareprofessionals andfamilieswithfamilypresenceduringtheperformanceof proceduresinpaediatricpatients.Thepopulationofinterest consistedofpatientsaged18yearsoryounger.

Datacollection

We used the following keywords: ‘‘acompa˜namiento’’

(accompanying), ‘‘ética del cuidado’’ (ethics of care),

‘‘familiares’’ (family members), ‘‘menor’’ (minor),

‘‘ni˜nos’’ (children), ‘‘reanimación cardiopulmonar’’ (cardiopulmonary resuscitation), ‘‘técnicas’’ (techniques).

We restricted the search to studies conducted in humans publishedinEnglishorSpanish.

Ethicalconsiderations

Thisstudydidnotinvolvethedirectparticipationofpatients northecollectionofpatientinformation.

Background: accompanying and best interests of the child

Accompanying/familypresence

Before the development of hospitals, it was families, by default,thatcaredfortheillathome.Itwasthecreation ofhospitalsandadvancesinhealthcarethatbroughtonthe restrictionsonfamilypresence.Concernsregardinghygiene werethemainreasonforprohibitingvisits.³

Inthepastcentury,somehumanpsychologyresearchers startedtowriteaboutthedeleteriouseffectsofseparating motherand child,and attachmenttheory wasformulated in a report prepared for the World Health Organization (WHO) in 1952. However, it was not until the publication of the Platt report in the United Kingdom that a revolution took place in the care of children, going suc- cessively from‘‘parentalparticipation’’to‘‘collaborative care’’to‘‘patient-andfamily-centredcare’’,withrecom- mendations given to engage the participation of parents in caredelivery, eveninresuscitation andinvasive procedures, in spite of which there are inconsistencies in how thisapproachisgenerallyacceptedandwidevariabilityin actualpractice.^4---10

Thereisevidenceofthereservationsprofessionalsmay feeltowardthepresenceoffamilymembersduringproce- dures, the architectural barriers or space limitations and thepotentialtraumaandanxietythatmayresultfromthe

witnessingofthenecessaryinterventions.Professionalsmay also feel unease at the possibility of being evaluated or challenged,whichheightensthestress.

Differentpublicationshaveshedlightonthissituation.

An article publishedin AnalesdePediatríain 2008, ‘‘Are parents present during invasive procedures?’’, described thepracticein32 hospitalsinSpain.In2012,thechanges in culture were assessed in a new publication titled

‘‘Has the presence of parents during invasive procedures in the emergency department increased in the last few years?’’.^11,12

Parents and familiescould argue that the right of the child tobeaccompanied is establishedin article 3 ofthe European Charter for children in hospital, reﬂecting the current legal void, with the possible exception of article 18.1oftheSpanishConstitution,guaranteeingtherightto personaland family, andaspectsregarding conﬁdentiality andpersonalinformationcontemplatedinLaw41/2002of 14November onthe autonomy of the patient,enumerat- ing patientrights and obligations regarding the access to clinical informationby the patient, personslinked tothe patient,forfamilyreasonsortotheextentthatthepatient permits.¹³

Thevulnerabilityoftheminor,manifestedthroughemo- tionalneedsthatareindependentofcultural,psychological, spiritual, religious or social differences, underscores the importance of the presence of the family. We must also notforgetthedecreaseinanxietyachievedbyhavingdirect accesstoinformationanddecisions.¹⁴

Bestinterestsofthechild

In2001, the working group ofthe Confederation ofEuro- peanSpecialistsinPaediatricsdeﬁnedthebestinterestsof thechildconsidering thechildasauniquehumanindivid- ual,holderofrights,deservingofevidence-basedcareand palliativecare tominimisesuffering, rejectingintentional endoflifeandestablishingthatdisabilityisnotareasonto withdraworwithholdtreatment.¹²

At present, the best interestsof the child are deﬁned asseekingtoguaranteethechild’sfutureautonomy,free- domto develop a personal identity, ability tomeet basic life and health care needs, livea normal life, form relationships, have feelings, learn, communicate and express personalviewsinthecommunity^15---17(Fig.1).

Childhood is a social construct concerning a stage of the human lifespan on which values are projected that haveevolvedovertimewiththedevelopmentofthewel- farestate.Typically,decision-makinginpursuitofthebest interestsofthechildinvolvesaskingthechild’sopinionor consideringthetiesorvaluesthatthechildhasexhibitedin previousdecisionsorinothercontexts.

Theclinicalrelationshipwhenachildoradolescentand thefamilyidentifyahealthcareneedinvolvesvaluesappli- cabletothedifferentpartiesinvolvedwithintheframework of the four principles of bioethics. In Europe, emphasis hasbeenplacedontherelationalcomponentofautonomy, proposingamodelcentredonthevulnerabilityofthehuman individual(Fig.2).¹⁸

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Figure1 Thebestinterestsofthechild.

Figure2 BIOMEDIIproject.

BasicethicalPrinciplesinEuropeanbioethicsandbiolaw(Rendtorff¹⁵).

Whoshoulddecidewhatisinthebestinterestof thechild?

Parents,bydefault,havethecustodyofchildrentoprotect andcareforthem.Asstipulatedinarticle154oftheSpanish CivilCode,parentalauthoritywillbeexercisedalwaysfor thebeneﬁtofthechild.Iftheparentsdonotinterpretthe bestinterestsofthechildcorrectlyoracttothedetriment oftheminor(article158.3),thecourtcanremovecustody andplacethechildunderlegalguardianship(article215and ss.).

The challenge resides in deﬁning what constitutes the bestinterestsofthechildandwhoistodetermineit.His- torically,ithasbeenassumedthatthebeneﬁtofthechild wasanobjectivematterandhadtobepursuedbyeveryone ineveryproxydecisionmadeinthesteadofminorsorindi- vidualswithdisabilities.Theresponsibilityhasbeenplaced withtheparents,whoshouldbeabletochoosetooraskto

accompanythechildduringtheperformanceofmoreorless invasiveprocedures.

The bestinterests of the child is an ethical and legal principle that must be taken into account in any proxy or joint decision made in the care of a child, as estab- lished in the regulations concerning minors and the law.

The latter contemplates the best interests of the child as anything that will beneﬁt the minor, in the broadest possible sense, and not only in material terms, but also social,psychologicalormoralterms,amongotheraspects, includinganything that may impact the child’s dignity as aperson and thesafeguarding of thechild’s fundamental rights.Thebestinterestsofthechildmustbeupheldover anypersonalpreferencesofparents,guardians,caregivers, physiciansorgoverningbodies.Inthisregard,OrganicLaw 1/1996onthelegalprotectionoftheminorstipulatesthat

‘‘all minors have the right to have their best interests taken as a primary consideration in all actions or deci-

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sions that concern them in both the public and private spheres’’.

In thecase of children that have yet todevelop their ownvaluesystem, decisionsaremadebyproxy.However, thedecision-makingrightsofparentsarenotabsolute;par- entsmayhavetheinitialauthority,butnotnecessarilythe lastword.Iftheyarenotactingforthebeneﬁtofthechild, society can remove their authority to protect ‘‘the best interests’’ oftheminor,understoodasfollowsinthenext section.

Legislation

OrganicLaw8/2015onthelegalprotectionofminors,modi- fyingthecivilcodeandthecodeofcivilprocedure,andLaw 26/2015,amendingthesystemfortheprotectionofminors, introducedthefollowingcriteriainrelationtotheinterpre- tationandapplicationoftheprincipleofthebestinterests ofthechild(article2):

a) Upholdingtherighttolife,survivalanddevelopmentof theminorandthefulfilmentofthechild’sbasicneeds, material,physicalandeducationalaswellasemotional andaffective.This appliestheprinciplesof nonmalefi- cenceandbeneficence.

b) Consideringthewishes,feelingsandviewsoftheminor andthe rightof theminortoparticipatetoaprogres- sively increasing degree, depending on age, level of maturity,developmentandpersonalgrowth,inthedeﬁ- nitionofthebestinterestsofthechild.Thisencompasses theprincipleofautonomy.

c) Facilitatingthatthelifeanddevelopmentoftheminor unfold in an adequate family environmentand free of violence.Thisappliestheprincipleofjustice.

d) Protectingtheidentity,culture,religion,beliefs,sexual orientationandgenderidentityorlanguageoftheminor, andpreventingdiscriminationfortheseoranyothercon- ditions,includingdisability,toguaranteetheharmonious personalgrowthoftheminor.Thisalsoappliestheprin- cipleofautonomy.

Pursuingthebestinterestsofthechildrequiresthefam- ily and parents to engagein shared decision-making with children and adolescentsas appropriately and sensibly as possible, and to accompany the child in the process of diseaseandanydiagnosticortherapeuticprocedures.How- ever,attimestheremaybeparentswhodonotwishtobe present,outoffearoranxiety,orprofessionalsreluctantto theirpresence,especiallyinmoreinvasiveprocedures,such ascardiopulmonaryresuscitation.

In suchscenarios,differentvaluesmay comeinto con- ﬂict, such assafety, conﬁdentiality, privacy, care quality, professionalism,relationalautonomyandthebestinterests oftheminor.¹⁹

Healthcareprofessionalsmayconsiderthatthepresence ofthefamilymaymakeinterventionslongerandhinderthe ﬂowofthework,notingthedifﬁcultyininformingfamilies.

Thisiscompoundedbyalackofnecessaryskillstoaddress the stress of families, in addition tothe greater physical andpsychological burdenimposedbytheongoing interac- tionwiththefamily,whichcanbeinconvenientandcause

interruptions,inadditiontothepotentiallyincreasedriskof nosocomialinfection.Thereisalsoanunderlyingimpression thatthepresenceofparentscomplicatesteaching,aswell aslegalconcerns.²⁰

In the field of paediatrics, the family should be con- sidered inseparable from the minor in recognition of the rightofminors tobeaccompanied atalltimes,asabasic need,complementarytocare,towhichhealthcarefacilities andsystemsneed toadapt,asestablishedintheprologue ofDecree 246/2005 of 8Novemberof the Governmentof Andalusia.Diseaseplacesminorsinapositionofmaximum vulnerability,both physical andpsychological. The decree specificallydevotes onearticle to thesubject(article 8), highlighting the right of minors tobe accompanied at all times. The provisions for restricting family presence are verystringentandonlycontemplatesituationsinwhichsaid presencewouldhindercaredelivery (therationale usually givenforrestricting familypresence):necessary measures should be taken to avoid any potential negative impact, withoutforgettinganaspectthatisoftenneglectedinthe care of children and adolescents, which is privacy during physicalexaminationsortheperformanceofinterventions or procedures. From a culture of consent and trust, it is possibletoobtain theinformationrequiredaslong asthe minorfeels adequately reassured that confidentiality will besafeguardedanddecision-makingshared.Inlightofthis, disallowingthepresenceoftheparentsviolatestheprinci- plesofautonomyandbeneficence,evenifitdoesnotviolate theprincipleofnonmaleficenceinavoidingharmtothechild andthefamily.Theabsenceofparentsand/or otherfam- ily membersshould beexceptional, for instance, incases of child abuse or in the care of adolescents whoexpress anunwillingnesstobeaccompaniedforprivacyconcernsor otherreasons,therebysafeguardingtheirrighttoconfiden- tiality and theprotection of personal information, in the absenceofaseriousthreattotheirlifeorphysicalintegrity.

The management of health problems, and speciﬁcally family presence or the accompanying of children during procedures,arecurrentlyapproachedavoidingpaternalistic attitudesbybothhealthcareprofessionalsandfamilieswho seektobemoreinvolvedinthecareofthechild,withthe goalofprovidingholisticcarethatdoestakeintoconsidera- tionnotonlytechnical,butalsopsychologicalandemotional aspects.

Bioethicalprinciplesofaccompanimentandcare provisiontominors

Care can only be delivered in proximity, and therefore, accompanying the child or adolescent with health care needsisanintrinsicaspectofcaredeliverythatcanbecon- struedor deﬁnedaroundthreephenomenological notions:

phenomena,intentionalityandobjectofknowledge.

1 Patient-andfamily-centredcare,associatedwitheffec- tiveness, functionality and safety, providing care with transparencywhilesafeguardingthedignityofthechild.

2 Theethicsofcareconcerningeducationalandrelational aspects,integratingagenderperspective,empathy(feel- ing withtheother), avoidingoverprotectiveness,undue sacriﬁceandprofessionalburnout.

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Table1 Phasesofcare.

Carestage Responsibility Action Value

Firstphase caringabout Recognisingtheneedofcareinothers Attentiveness Secondphase caringfor Takingresponsibilitytomeetthatneed Responsibility

Thirdphase caregiving Performingtheactualworkofcaringandassisting Technicalcompetenceandrespect Fourthphase carereceiving Receivingserviceoractivity Sharedresponsibility

Fifthphase caringwith Creatingthenecessaryconditionsforcare,self-care Responsibility AdaptedfromDomínguez.²⁴.

3 The‘‘wholepersoncare’’orbiopsychosocialcaremodel with a holistic, spiritual approach that recognises the humanityofthephysician,theindividualityofthechild oradolescentandtheimportanceofthetherapeuticrela- tionship.Thatis,thecomprehensivecareofthechildas aperson.

Carecanalsobeunderstoodasaprofessionorasanact ofcompassion.²¹

Fromtheearlieststagesoflifeandchildhood,individuals havedignity,aprinciplethatappliestoallhumansequally.

In the contextof the ethics ofcare, dignity and vulnera- bilitymustberespectedandapproachedwithcompassion, solidarity and relational autonomy (responsibility toward others),includingthefamilyinthecomprehensivesenseat thephysical,psychological andemotionallevels,inapro- cessof humanising health care centredin theperson and theperson’slife.

Caregivingistheactofassistinganotherintheprocess ofgrowinganddevelopingwiththeultimatepurposeofsus- taininglife.

No stageof developmentinhuman lifeis asimportant aschildhood,duringwhichitisimportanttoapproachthe childor adolescentwithrespectandpositiveregardasan independentindividual,helpingthemreachtheirfullpoten- tialforself-care.Thisdoesnotresultfromaneedforcare orassistance,butrathercontributestoautonomy.

Attitudesregardingthepresenceofthefamilyarebased on cultural, religious and economic determinants, among others, andaccompaniment is a social constructthat has become more prominent, with awareness increasing sig- niﬁcantly during the SARS-CoV-2 pandemic, when it was recognisedasacrucialaspectintheintensivecareunit(ICU) andneonatalcare.²²

In the ﬁeld of paediatric palliative care, there is also evidence of the importance of the family’s presence and participationindifferentaspectsofcare(physicalandemo- tional)andindecision-making.²³

Ill children feel vulnerable, alone, depersonalized, afraid, uncertain, helpless and in pain, feelings that can be alleviated by thesolidarity between patients, the cir- cle of family and friendsand the attitude of health care professionals.

Trontoproposedthatthereare5phasesincaredelivery, ascitedbyDomínguezetal.,²⁴summarisedinTable1.

Healthisthegoalofhealthcare.Healthrecoveryorpro- motionisalifeexperiencetiedtowellbeingandcaregiving.

Theissueathandisnottheparticulardiseaseathandorthe techniquesusedinthediagnosisoftreatmentofthechild,

theseverityofdisease,thelevelofdependenceoreventhe possibilityofdeath;thekeyissueisassistancetobeprovided toensurethatthepatientgoesthroughthoseexperiences ascomfortably aspossible and engages in actively in the caredeliveryprocess,promotingself-careinthecontextof everydaylivinginthefamilyenvironment.

The care of a child is an activity,an attitude, a com- mitment,anexperience,asocialprocessthatgoesbeyond empathyandaffectionintodimensions suchastheburden ofcaringandthe feelingsor worryat thecognitivelevel.

It is a form of social organization that is learnt instinc- tively, vocational and personal, but also social.²⁵ Caring forandaccompanyingthepatientinthecaredeliverypro- cessshouldbeconsideredacommongoodandpromotedby institutionswiththeaimofsharingtheresponsibilityofcare- giving and providingcare withtechnical competenceand respect,asTrontodescribed,²⁴inanactofsolidarity.

RecommendationoftheCommitteeonBioethicsof theAsociaciónEspa˜noladePediatría

A child- and family-centred model of care must be pro- moted,informingandempoweringpatientsandfamiliesand involvingthemindecision-makingandcaredelivery.

Translating the ethics of care to real-world practice beyondthe principles and ethics of justice and procedu- ralismrequiresthe introductionof policiesand guidelines thatmust be adaptedto each institution,avoiding power dynamicsin health care relationships and the burnout of professionals, approaching care and the accompanying of patientsasanactivity,aprofessionaltask,anattitudeand amoralimperative.^26,27

In this regard, there are numerous examples at the international level of the implementation of policies and guidelinesbyinstitutionssuchastheEmergencyNursesAsso- ciation, theAmerican Association of Critical CareNurses, the European Resuscitation Council, the European Feder- ation of Critical Care Nursing associations, the European Society of Paediatric and Neonatal Intensive Care or the InternationalLiaisonCommittee onResuscitation (ILCOR), notingthebeneﬁcialimpactofofferingfamilies,onaccount oftheirpersonalandrelationalabilities,theopportunityto bepresent,andthedutyofprofessionalstoexhibitsensitiv- ityinthesesituations.

Fromtheperspectiveoftheethicsofcare,itispossibleto evolvefromapaternalisticperceptionofcaredeliveryasan individual,privateandrationalresponsibility,inwhichthe childwouldbeleftinisolation,toanemotional,relational, compassionate,empoweringandsolidaryactivitythattakes

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Table2 Thetenprinciplesonfamilypresenceforaccompanyingminors.

Thetenprinciplesonfamilypresenceforaccompanyingminorsindiagnosticandtherapeuticprocedures

Childrenhavetherighttohavewiththemasmuchaspossibleduringtheirstaytheirparentsorthepersonactinginloco parentis(article3ofEuropeanCharterforchildreninhospital).

Theprotectionofthefundamentalrightsofthechildentailssafeguardingthechild’sdignityandupholdingthechild’srightto beinformedinadevelopmentallyappropriatemanneraccordingtothechild’slevelofcomprehension.

Thepresenceofparents,familymembersand/orcaregiversmaydecreasetheanxietyofthechildandisrecognisedasa nonpharmacologicalpainmanagementstrategy.

Thepresenceofparentsorfamilymembersaccompanyingtheminorfacilitatesshareddecision-making.

Anyactionbyprofessionalswillalwaysbeguidedbythebestinterestsofthechild(Law8/2015).

Proxydecisionsmadebyparentsand/orlegalguardiansofthechildoradolescentsmustalwayspursuethebestinterestsof thechild.

Thepresenceofparentsorothercaregiversaccompanyingtheminorpromotesthedevelopmentofsafepractices.

Healthcarefacilitiesmustbesafeenvironmentsforminors(Law8/2021),upholdingchildren’srightsandpromotinga protectivephysical,psychologicalandsocialenvironment.

Professionalismincludesthedevelopmentofcaresettingsandstrategiesthatplacethechildandfamilyatthecentreofcare delivery.

Theroutineperformanceofproceduresmustnotleadprofessionalstolosetouchwiththeessenceofthecaredeliveryact, thechild-andfamily-centredapproachtocaredeliveryortheneedsandvaluesoftheminorandthefamily.

intoaccountthegender perspective,basedontrust,reci- procityandinterdependence,madepossiblebymaintaining receptivity,²⁸ with the aim of responding with respectful empathy,an attitudethat developsthroughexperiencein caredelivery.

Thus,therehasbeenashiftfromatheoretical-regulatory perspectivetoanexpressive-deliberativeapproachthatpro- motescompromiseandinterpretsequalityasthepossibility ofunderstandingthevariousattitudesofchildren,adolescents andtheirfamiliesin thecontextof theirdaily lives andgoals.Itcombinesreasonwithfeelingsinacordialfash- ion,overcoming thebarrier ofobjectivityandestablishing deliberationasacrucialtool.²⁹

For all of the above, the Committee on Bioethics of theAEPrecommendsthedevelopmentofguidelinesproto- colsandpoliciesfortheaccompanyingofminorsinSpanish healthcarefacilitiestoupholdarightofminorswithbeneﬁ- cialeffectsandwiththehelpofaprofessionalservingasthe intermediarybetweenthechild,thefamilyandthehealth careteamandinadherencetothe10principleslistedatthe endofthisstatement(Table2).

Healthcareprofessionalsmustbeadequatelytrainedto ensure the holisticsupport of minors and families guided by theseprotocols,rooting clinical practicein valuesand allowingfordiversity----cultural,religious,etc.

Guidelinesandprotocolsneedtodetailthecompetences andresponsibilitiesofeachmemberofthecareteam,and at least oneof them shouldhave the necessary qualiﬁca- tiontoserveastheprofessionalorfamilyrepresentativeor facilitatormediatingbetweenpaediatricpatientsandfam- ilies ononehand andthespecialists inthecare team,as reﬂectedinFig.3.

These institutional policies raise awareness about the positiveimpactonchildren offamilypresenceandshared decision-making,whichreducestheanxietyofallinvolved parties and any concerns regarding potential legal ram- iﬁcations. Thus, we advocate for the development of a professional code which, reﬂected in the health records, willserveasamodel,giventhegapsincurrentlaworreg-

Figure 3 Venn diagram on the presence of the family to accompanythechild.

Source:in-housedevelopment.

ulations, aswell as strategies for the potential outcomes ofthecareprocess,bothforfamiliesandcareteams,tobe evaluatedperiodically,inadditiontoprovidingeducationon thesubject.³⁰

Funding

Nofundingwasawardedbyanyinstitutionforthedevelop- mentofthisdocument.

Conﬂicts of interest

TheauthorsrepresentingtheCommitteeonBioethicsofthe AsociaciónEspa˜noladePediatríahavenoconﬂictsofinterest todisclose.

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Accompaniment of minors during health care procedures

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