WhatDoWeMean WhenWeSay “GoodParent”?
Introduction
Formorethanadecade,pediatricpalliativecareprofessionals havebeencuriousabouthowparentsofachildwithserious illnessthinkabouttheirroleandconsiderwhethertheyare achievingtheir“goodparent”ideal.CourageousParents Networkhasavidlyconsumedwhattheseresearchers informallyrefertoas“thegoodparentresearch”andhas helpedidentifyfamiliestoparticipateintheresearch
Itisimportanttonotethattheterm“goodparent”isnota judgmentfromclinicians.Thetermoriginatedfromparentsof childrenintreatmentforillness.Inallthestudiesaboutbeinga goodparenttoanyillchild,parentsframebeinga“good parent”aspositiveandwhattheystrivetobe.Theydonot speaktotheideaofbeinga“bad”parent.
So,whathavewelearned?Thecontentonthesepagescomes outoftheclinicians’research,plusinsightsandexperienceof familiesandclinicianswhogenerouslysharethemselveswith CourageousParentsNetwork.Itisnotpossibletonormalizethis difficultparentingjourney.However,wheretheCPNcommunity canoffercomfort,provideencouragement,andmodel parentalcourage,that’swhatthisGuideismeanttodo.
theirchilddevelopandgrowtoreachtheirfullest potential.
Thesetraditionalmeasuresofgoodparentingbasically applytoallparenting,butparentingachildwithmedical complexityaddslayersofnuancetotheseideals.The stakesmayfeelhigher.
Forexample,familiessay:
Advocatingfortheirmedicallycomplexchild(for example,withpediatricclinicians,insurance,school systems)isaprimarytask.Itisconstantandtimeconsuming.
Theyspendmoretimedoingresearch(onthe diagnosis,prognosis,team,availablesupport,and otherresources).
Thesenseofresponsibilityforamedicallycomplex childweighsmoreheavilythanitdoesfortheirtypical children,iftheyhavethem.
Achildwhoisillormedicallycomplicatedneeds moreattentionandhands-oncare,whichtypically takesmoretimeandmayconflictwithparents’ concernforthewelfareoftheirotherchildren.
Thereisadifferentsenseofthefuturewiththeirchild andwhatitmeanstopreparethemforautonomy.
Thesedifferencescomewithotherchallengestoo.The hospitalandmedical“system”arenewandbewildering tomanyparents.Cliniciansmayhavediverse perspectivesonwhatandhowtotreatsymptoms;few cliniciansseemtohaveaviewofthewholechildand theirfamilyandtheirlifeathome.Familymembersmay feelisolatedorevenalienatedfromotherswhodon’tfully understandtheirsituation.Navigatingmedical complexityisexhausting,andthereislittleornotimefor acaregivertoconsidertheirownneeds.Andperhaps mostofall:therearesomanydifficultdecisionstobe made,andaparentmayfeelparalyzedbyfearof makingthe“wrong”decisionorregrettingadecision made.
BeingtheBestParent thatYouCanBe
Thejourneyisnotalwayspredictable,andthingsmay notunfoldexactlyasyouwouldexpectorhope.Butitis possibletofeelthatyouare,andhavebeen,thebest parentpossibleallalongthejourney.Familiesand cliniciansofferthisadvice.
Timeisyourgreatallyasyougrow intotheroleofcaregiver.
Bepatientwithyourselfandtrustthatyourexpertisewill come.Withtimeandhands-onexperience,youcan expecttofeelincreasinglyconfident.
“Althoughit[tracheostomy]wasoneofthemostdifficult decisionsI’veeverhadtomake,Ieventuallyfoundpeace inknowingthatIwasnolongeractingoutofdesperation. Instead,Imovedforwardwiththeconfidencethatthiswas whatBubbatrulyneeded comfort,dignity,andthe unwaveringpresenceofamotherattunedtobothher child’sneedsandherowninnerguidance.Theanxietythat hadweighedonmeforyearsdidn’tvanishentirely,butit waseasedbytheclarityandlovethatcamewiththe decision.Inthatspace,IwasabletosimplybewithBubba —holdinghishand,lovinghimdeeply,andcontinuingour journeytogether.”
Blair,parentofBubba
Youaretheexpertonyourchild,including whatthechildisableornotabletodo,and howtheycommunicate.Ownyour expertiseandadvocacy.
Youknowyourchildbestandyourlovinginsightsare good.Yourinsightswillbeextremelyvaluabletothe medicalteam.Youcanrequestsupportifyoufeelthatyou arenotbeingheard.
“Beempowered…asaparentyouhaveaninnatesenseof what’sbestforyourchildandwhat’sgoingonwithyourchild… Don’tsay,‘Oh,he’sthedoctor,heknows.’No.Theydon’tknow everything.Weshouldallbehumbleenoughtoknowthatwe don’tknoweverything,andthereforeweneedtoseek guidancefromothers…It’syourchild,leavenostone unturned…Foryourownpieceofmindyoucansay,‘Ifeellike somethingisstillmissing.Ifeellikewehaven’tcovered everything.Idon’tknowwhattoaskyou,but…isthere somethingelsethatweshouldbedoing?’”
Jenessa,parentofChloe,ZacharyandAlex
Letyourcaregoalsguideyouas youmakedecisionsforyour childandfamily.
Ifyouhaveaccesstoapalliativecareclinician,theycan helpyouthinkaboutwhatmattersmosttoyouandwhat yourprioritiesareforyourchild.
“Idon'tthinkthatthereisanyonerightchoiceorwrong choice,becauseeveryfamilyandeverychildisdifferent.Butif we,asparents,aretryingtocenterourchild'sexperience everydaywitheverychoice,Idon'tseehowwecangowrong. Ishispresentmomentcomfortable?Doeshefeelsafe?That's hiswholeworld.Andso,wewerereallycareful:ifwetakehim outofhiscomfortzone,wewantedtomakesurethatwehad areallygoodreason.”
—Ashley,parentofViggo
Encouragetheclinicianstobeopen,honest,directand compassionate.Explainyourboundaries:whatandhow muchyouneedandwanttoknowatanytime(andthat yourboundariesmaychange).Lettheteamknowhow theirbehavioraffectsyou anythingthatmakesyoufeel uncomfortable,confusedordisrespected.And,thatyou appreciatetheirkindwordsandsupport.
“Ihavetousealotofenergycaringforandengagingonmy child’sbehalf.Inmanyofmyson’sappointments,I’veasked providerstousewordsthatIcaneasilyunderstand,orto explain[awordorconcept]tomeasifIwereafive-year-old.I don’thavetheenergytoconsultmymentaldictionaryand decodewhat’sbeingexplainedtome.Conversinginsimple, non-medicaljargonisamust.”
—Naomi,parentofNoah
Ifspiritualityisimportanttoyou,it can(andshould)beanimportant partofyourcaregivingjourney.
Youmayfeelthatitisimportanttohelpyourchild’sspiritual selfbeconnectedtofamily,nature,activities,formsofselfexpression,questionsaboutahigherpower.Forsomeparents thisisawayofhonoringtheirchild’suniqueness Clinicians aren'talwayscomfortabletalkingaboutbeliefsandpractices thatforsomepeopleareveryprivate,sotheydon'talways tendtothem.Youcanguideyourchildoraskforhelpfroma spiritualadvisororcliniciantoguideyouandyourchild.
“Afterhistransplant,whenDavidwasinisolation,hestarted havingchangesinhispersonality.Hewasaverysweetboy andsuddenlyhewasconfrontationalwithusandthestaff. Thestaffsaidthey’dseenthisbefore,butnoonewoulddo anythingaboutit.Ikeptinsistingthatsomeonegoinand speakwithhim,someonetoreallyconnectwithhim.The doctorwasuncomfortable,buthedidit.Andafter,Davidwas smilingandhesaid,‘Let’splayagame.’Itwaslikethisburden hadbeenliftedfromhisshoulders.”
—Robin,parentofDavid
Don’tautomaticallyaccepttermslike “should”or“haveto”or“needto.”
Asktheclinicianwhattheymeanwhentheyusethese terms,especiallyiftheyaremakingrecommendations aboutanintervention.Inmostcasesyoucantaketimeto thinkabouthowthetreatmentwillaffectyourchild,and whethergoingforwardisinyourfamily’sbestinterest.
“WehadasharedphilosophywhichIthinkmadealotof decisionsmucheasier,inthatwealwayslookedatanykindof interventionwithBenwithonebasicquestion:isthisgoingto benefithisqualityoflifeorourfamily’squalityoflife?Andwe framedeverydecisionaroundthat.Soitwasn't,shouldhe havethissurgery,shouldhehavethisintervention,shouldhe havethistest.Wewerealwaysaskingdoctors,well,whatare thetestsgoingtotellyou?Hereisoneanswer,hereisthe otheranswer,andwhatareyougoingtodoaboutit?Andif thereisnothingthatwasgoingtobedone,regardlessofwhat theanswerwouldbe,we'dsay,‘Well,then,wedon'tneedthe test.’”
—Stuart,parentofBen
Allowthatyourgoalsmayshiftovertime withchangesinyourchild’sabilities.
Studiesshowthatparentswhorecognizeandrespondto changesintheirchild’shealthandfunctioningaremorelikely tosetnewgoalsfortheirchildandfamily,andtoconsiderways toattainthem.Somethingsmaybecomemoreimportant,and somelessimportant.Thisdoesn’tmeanthatyouhavemade badorwrongchoicesbefore,onlythatyouhavedifferent informationtoworkwithnowandareadjusting.
“IwasoneofthoseparentswhowoulddoeverythingthatIcouldfor him,whichwasphysicaltherapy,speechtherapy,occupational therapy,goingbackandforthtothehospitalsandallthosethings, twoorthreetimesaweek HehadpooltherapyaspartofhisPT he absolutelylovedit.Butwehadtogiveitupbecauseyouhadtodo landtherapyifyouwantedtodopooltherapy.Youhadtodobothfor hisinsurance.IrealizedthatIhadtostopallofitbecause[land therapy]washurtinghimmorethanitwashelpinghim.Butthemom inme,theonewhowaswantingtoseehimgetbetterandbearound foralltheseyears,thatmomwaslike,let'skeepthoselegsloose, keepmusclesfromgettingtootight,wearegoingtodoallthis.But thatwasnotwhatwasbestforhim.AndIhadtoreallylookatmyself andseewhyIwasdoingitandunderstandingthatgrievingaspectof beingamom hisbodyjustwasnotcapable,andIhadtoaccept that.”
Aubrey,parentofDe’Aubrey
Resisttheneed(ordesire) tobeperfect.
Thedo-tolistgetslong,anditmaynotbehumanlypossibletodo everythingonit.Youmayworryaboutwhatothers(including clinicians)expectofyou,thattheyarejudgingyou.Youmay expectalotofyourself,too.Considertheeffortrequiredforatask andthinkabouttheoutcomeyouwanttoachieve.Prioritizeas muchasyoucan Youdon’thavetodoeverything,oreven everythingthatyoureallywanttodo,allatonce orever.
“WhenKatiewaslittletheoccupationaltherapistwouldworkwithher andsay,‘Iwantyoutodojustthesetwothings,thisandthis,andtell mehowitgoesnextweek.’AndI'dgo,‘Oh,okay.’Andtheteacher wouldcomeandsay,‘Makesureyou’retryingtodothisduring feeding.’‘Oh,okay.’AndthenSpeechwouldaddanotherlittle homeworkassignment Andeachonewasveryreasonable,butby theendoftheweek,Ihad12thingsIneededtotryinadditionto givingher14medicationsfourtimesadayandrememberingthe timingofwhichonegoeswhere.IfeltlikeIhadtodoeveryoneof thosethingstobeagoodparentandeventuallyyourealizeyoujust actuallycan't.Imean,maybesomepeoplecanbutIcouldn't.SoI hadtofigureoutwhatmyprioritieswereforKatieandwhatmy partner’sprioritieswereforKatie.AndIputthemostattentionto those,evenifthathadmeantthatsomedaysIhadtosay,‘Wedidn't trythatthisweek’or"No,Ididn’tgettothat.’”
June,parentofKatie
Youwillnodoubtfindthatsomeopinionsarewelcome andotheropinionsarenot.Letyourfriendsandfamily knowwhatadviceyouwelcome.Considereverythingelse adistractionandletitgo.Bespecificaboutyourneeds andyourfamily’sneeds,asmuchasyouareable.You naturallywanttobesensitivetoothers,butdon’tspenda lotoftimetakingcareoftheirfeelings.
“Wedidn'thavethebandwidthtotakecare[ofthe grandparents].AsacaregiverIwantedtobeabletosupport themback,butIcouldn’t.Iheardalotofthingsthat particularlymymomsaid,asshewasgrieving,thatwere reallyhardformetohearasthemother.Itwashergrieving process,butItdidn'thelpme.”
Laura,parentofAlden
Acknowledgeandcelebrate yourowngrowth.
Accompanyingyourchildisoneofthemoststressful thingsyouwilleverdo.Considerhowyourabilitytolearn andtobeflexibleareservingyourfamilynowandwillhelp youthriveinthefuture.
“Therearesomanychallenges;there'salwayssomethingnew, whetherit'semotionalstressorpressuresthatarecreatedat homeoratworkorwithamedicalsituation.It’seasytofocus justonthat,it'seasytoletyourselfbeupsetordisappointed. Butifyoureflectonwhereyouwereimmediatelyafterthe diagnosisandtheprogressyou'vemadeandtheincredible thingsyou'veaccomplished Itakesomeprideinthat,and howfarhowfarwe'vecome.It'satonofwork.Ifeellikeyou needoneofthoseremindersthatanappwillsend a‘thiswas lastyear’typeofrecap.Youneedtoseethatyou'vegotten throughitandgottothenextstageandarecontinuingto progressandbestronger.”
—Dave,parentofAlden
ThankYou
CPNwishestothankthesourcesforthismaterial,includingthe parentsand
PamelaS.Hinds,RN,PhD,FAANetal:“TryingtoBeaGood Parent”AsDefinedByInterviewsWithParentsWhoMadePhase I,TerminalCare,andResuscitationDecisionsforTheirChildren, JournalofClinicalOncology,2009December
ChrisFeudtner,MD,PhD,MPH,etal:GoodParentBeliefsof ParentsofSeriouslyIllChildren,JAMAPediatrics,2015January
DouglasL.Hill,PhD,etal:ChangesOverTimeinGood-Parent BeliefsAmongParentsofChildrenwithSeriousIllness:ATwoYearCohortStudy,JournalofPainSymptomManagement, 2019August
MeaghannWeaver,MD,PhD,MPH,HEC-C,etal:Good-Parent Beliefs:Research,ConceptandClinicalPractice,JAMA Pediatrics,2020May
MeaghannWeaver,MD,PhD,MPH,HEC-C,etal:Honoringthe GoodParentIntentionsofCourageousParents:AThematic SummaryfromaUS-BasedNationalSurvey,Children,2020 December
NeuroJourney(NeuroJourney.org),CourageousParents Network,published2023andongoing
MedicalComplexity(MedicalComplexity.org),Courageous ParentsNetwork,published2025andongoing