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Continuity of care for children with complex chronic health conditions: parents' perspectives Miller, Anton R; Condin, Christopher J; McKellin, William H; Shaw, Nicola; Klassen, Anne F; Sheps, Sam Dec 21, 2009

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ralssBioMed CentBMC Health Services ResearchOpen AcceResearch articleContinuity of care for children with complex chronic health conditions: parents' perspectivesAnton R Miller*1, Christopher J Condin2, William H McKellin2, Nicola Shaw3, Anne F Klassen4 and Sam Sheps5Address: 1Department of Pediatrics, University of British Columbia, Vancouver, British Columbia, Canada, 2Department of Anthropology, University of British Columbia, Vancouver, British Columbia, Canada, 3Department of Family Medicine, University of Alberta, Edmonton, Alberta, Canada, 4Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada and 5School of Population and Public Health, University of British Columbia, Vancouver, British Columbia, CanadaEmail: Anton R Miller* - amiller@cw.bc.ca; Christopher J Condin - condin@interchange.ubc.ca; William H McKellin - mcke@interchange.ubc.ca; Nicola Shaw - Nicola.Shaw@ualberta.ca; Anne F Klassen - aklass@mcmaster.ca; Sam Sheps - sam.sheps@ubc.ca* Corresponding author    AbstractBackground: Continuity of care has been explored largely from academic and service provider perspectives, and inrelation to adult patient/client groups. We interviewed parents of children with complex chronic health conditions toexamine how their experiences and perceptions of continuity of care fit with these perspectives; and to identify thesalient factors in the experience of, and factors contributing to, continuity in this population.Methods: Parents of 47 elementary school-aged children with spina bifida, Down syndrome, attention-deficit/hyperactivity disorder, Duchenne muscular dystrophy or cystic fibrosis participated in semi-structured interviews.Parents described and mapped the pattern of their interactions with service providers over time in all domains relevantto their child's health, well-being, and development (medical, rehabilitational, educational, and social supportive services),with particular attention paid to their perceptions of connectedness or coherency in these interactions. Verbatimtranscripts were analyzed thematically using a framework approach to impose structure regarding parents' perspectiveson continuity of care.Results: Existing academic concepts of relational, informational and management continuity were all discernable inparents' narratives. A thorough knowledge of the child on the part of service providers emerged as extremely importantto parents; such knowledge was underpinned by continuity of personal relationships, principally, and also by writteninformation. For this population, notions of continuity extend to the full range of service providers these children andfamilies need to achieve optimal health status, and are not limited to physicians and nurses. Communication amongproviders was seen as integral to perceived continuity. Compartmentalization of services and information led to parentsassuming a necessary, though at times, uncomfortable, coordinating role. Geographic factors, institutional structures andpractices, provider attitudes, and, on occasion, parent preferences and judgments, were all found to create barriers to"seamless" management and provision of care continuity across providers, settings, and sectors.Conclusions: These findings add new perspectives to the understanding of continuity within chronically ill children'shealth care. They are relevant to contemporary initiatives to improve continuity of services to children with special healthcare needs, demonstrate the need for parental support of their important role in maintaining continuity, and suggestPublished: 21 December 2009BMC Health Services Research 2009, 9:242 doi:10.1186/1472-6963-9-242Received: 25 June 2009Accepted: 21 December 2009This article is available from: http://www.biomedcentral.com/1472-6963/9/242© 2009 Miller et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.Page 1 of 11(page number not for citation purposes)avenues for further research.BMC Health Services Research 2009, 9:242 http://www.biomedcentral.com/1472-6963/9/242BackgroundImproving health care for persons with chronic healthconditions is a major goal of contemporary health servicedelivery systems [1]. Providing patients with a sense thatthe various elements of their health care services are con-nected over time and place, commonly referred to as con-tinuity or coordination of care, is a key component of thisgoal [2]. Definitional, conceptual and measurementissues have hampered research and quality improvementinitiatives involving continuity of care [3-5]. Nevertheless,several influential reviews of the past decade converge inaffirming the primacy of personal relationships, informa-tion exchange, effective communications, seamlessness ofservices, and flexibility in responding to changing individ-ual needs over time, in the construct of continuity of care[3,4,6].Two widely cited reviews on continuity of care proposethe following as key definitional elements: (a) it is anaspect of care experienced by persons receiving care, forservices received over time; (b) it involves the patient's("client's") experience of consistency, smoothness, andcoordination in care; and (c) it relates to how patients/cli-ents experience integration of services and coordinationamong providers [7,8]. The authors also delineated threemain dimensions of continuity: relational continuity,which refers to an ongoing therapeutic relationshipbetween a patient and one or more providers; informa-tional continuity, defined as "the use of information fromprior events and circumstances to make current careappropriate for the individual and his or her condition";and management continuity, defined as the timely provi-sion of services that complement each other within ashared management plan, delivered by a variety of provid-ers. Management continuity emphasizes the use and con-sistent implementation of care plans, especially whenpatients cross organizational and service boundaries [7,8].Much of the theoretical understanding of continuity ofcare, and empirical work on how it is experienced and per-ceived, is based on academic and provider perspectives inthe fields of general practice [6,9], mental health [4] andnursing [10]. Less attention has been paid to the continu-ity of care experienced by parents of children with chronichealth conditions since early studies showed that satisfac-tion with medical care is related to continuity of care,among parents of children with disabilities [11,12]. Thegaps in understanding the perspective of parents of chil-dren with complex chronic health conditions are mademore significant as a clearer picture of this population andits distinct service needs has emerged.We are referring here to the 9 to 12% of all children andresult of medical condition; and who require health andrelated services beyond that required by children generally[13,14]. Affected children require an array of services thatgo beyond medical and nursing services, extending torehabilitation, educational, social, and family supportservices [15,16]. Their parents are known to experiencefrustration as they try to weave through a complex andfragmented array of services that is difficult to manage[17,18]. In addition, planning for health and related serv-ices for children with complex chronic conditions musttake into account important differences in the situationand needs of this population compared with adults[19,20]. Of particular relevance are developmental statusand change during the childhood and teen years; the crit-ical mediating role played by parents, and sometimesother family members, in seeking and implementinginterventions that affect the child's health and well-being;and the role of the school environment as a context thatshapes children's social development.We addressed this existing gap in knowledge by undertak-ing a study of the experiences, perceptions and values ofparents of children with complex chronic conditions asthey relate to continuity of care. Using Reid and Hag-gerty's general framework [7,8] as a conceptual base, weaimed to examine two linked research questions: (1) towhat extent can the constructs of relational, informationaland management continuity be discerned in the narrativesof parents seeking and receiving services for their childrenwith complex chronic health conditions? (2) what aspectsor elements of services are particularly salient to these par-ents' perception of care as continuous and connected?MethodsStudy designThis qualitative study used in-depth, semi-structuredinterviews to elicit parents' narratives about the care andservices they received, and to map their interactions withformal and informal providers of health, developmental,educational, and social services. Parents' graphic represen-tations of these interactions created opportunities forthem to reflect upon their experiences and perceptions ofcontinuity, coherency, and "connectedness" within serv-ice networks related to their child's care.Participants and recruitmentWe used a purposive sampling strategy to recruit parentsor primary caregivers of elementary school-aged childrendiagnosed with five chronic conditions: spina bifida,Down syndrome, attention-deficit/hyperactivity disorder(ADHD), Duchenne muscular dystrophy (DMD), andcystic fibrosis. Participants were contacted through spe-cialized hospital clinics, physicians' offices, and patientPage 2 of 11(page number not for citation purposes)youth who may be affected by problems in more than onebody system; who experience functional limitations as asupport and advocacy organizations. These conditionswere selected as representative of chronic conditions ofBMC Health Services Research 2009, 9:242 http://www.biomedcentral.com/1472-6963/9/242childhood that have a significant and varied impact onchild and family functioning and require a wide range ofservices [21]. In targeting this age group, we aimed toachieve a degree of comparability among participants inthe length of time parents had had to reconcile themselvesto the child's diagnosis, and to experience interactionswith health, social, and educational services providers,while avoiding the issues inherent in negotiating transi-tion to adult services. During recruitment through hospi-tal and community recruitment partners, we emphasizedour goal of achieving diversity within the parent partici-pant group, while avoiding children with especially com-plex, multifactorial clinical profiles.The participant group consisted of primary caregivers of47 children, whose characteristics are summarized inTable 1. At this point in recruitment, subsequent inter-views did not provide new information about the catego-ries and themes under analysis. The participants werediverse in terms of geographic area of residence in theprovince of British Columbia (BC) and socio-economicbackgrounds (informally assessed by observations of thestate of the family home and parent reports of their occu-pation). Only one family did not use English as their firstlanguage. The vast majority of participating caregiverswere parents, usually mothers, so we refer to all study par-ticipants as "parents." In one family however the child'sguardians were grandparents.The study received approval from the University of BCResearch Ethics Board, and, in accordance with Universityethical guidelines, informed consent was obtained fromall participants. All names used in this paper are pseudo-nyms.Contextual setting of the studyIn BC, all children, including those with complex medicaland developmental needs, have access to publicly-fundedlocal and regional health care, as well as early interven-tion, rehabilitation, educational, and family supportiveservices. Psychology and other specialized therapy servicesare also available through the private sector. Physicianand hospital services are provided under Canada's single-payer Medicare system. Specialized interdisciplinary clin-ics at the province's tertiary academic pediatric health cen-tre offer longitudinal management and support tochildren and youth with cystic fibrosis, spina bifida andDMD.InterviewsSemi-structured, open-ended interviews were conductedby a trained member of the research team. Most families(44 of 47) were interviewed in their homes, while threewere interviewed at the hospital at their request. Parentswere encouraged to provide a spontaneous narrativeabout the various service providers with whom they andtheir child interacted over time, starting with their earliestcontacts. Questions and probes were designed to providean opportunity for parents to discuss how they perceivedand experienced a number of aspects of their child's care(see Additional file 1: Interview Guide, Appendix). Duringthe interview our goal was to elicit as complete a pictureas possible of individuals' service providers, teams, net-works, and agencies. To this end, parents were asked todraw a network diagram of all service providers. This dia-gram (see example, Figure 1), facilitated parents' explana-tions of how these services were connected ordisconnected. All interviews were audiotaped and tran-scribed verbatim for analysis. The interviewer's field notesprovided additional contextual information.AnalysisTranscribed interviews and field notes were imported intoATLAS.ti for data management and analysis of themes.Interview data underwent two major stages of coding andanalysis. After 10 interviews were completed, three of theTable 1: Characteristics of study participantsInterview participants (n = 47) Mother only 26Father only 2Both parents (or grandparents) 19Participants' health region of residence* Interior 7Fraser 19Vancouver Coastal 8Vancouver Island 10Northern 3Children's diagnosed health conditions Cystic fibrosis 7Spina bifida 9Down syndrome 11Duchenne muscular dystrophy 9Attention-deficit/hyperactivity disorder 11Age of children (years) median(range)9(5-13)Page 3 of 11(page number not for citation purposes)Sex of children Male:female 30:17*British Columbia is divided into five regional health authoritiesBMC Health Services Research 2009, 9:242 http://www.biomedcentral.com/1472-6963/9/242investigators representing the disciplines of pediatrics[ARM] and anthropology [CJC, WHM], respectively readthe transcripts and met to develop a coding scheme, toidentify themes for follow-up [22] in subsequent inter-views, and to inform the data analysis phase of the study.A comprehensive coding scheme was then developedfrom the data to capture the broad range of parent experi-ences. Some codes were developed inductively given theirrepeated appearance in the interviews; others were deriveddeductively based on the Reid and Haggerty continuitymodel [7,8]. Because the dataset covered a large numberof themes related to families' experiences of care moregenerally, we used a framework approach [23,24] to focuson themes and subthemes that were most relevant to con-tinuity of care and continuity of services. This approach iswell-suited to imposing structure on the data in a way thatis most relevant to the aims of the study [23,24]. Thismore detailed coding was done on material that had ini-tially been coded under broad headings of continuity--relational, informational, and management continuity--Results and DiscussionSix major overlapping themes emerged from parents' nar-ratives of interacting with service providers over time.Within these narratives we discern the significance of rela-tional, informational, and management continuity in theservices that parents and their children had received overtime. Their accounts further illustrate aspects or elementsthat were perceived as particularly salient to the continuityexperience for these children and their parents.Theme 1. Relational and informational continuity and their significanceRelational and informational continuity, individually andin combination, were found to support at least threeaspects of the care experience that parents value particu-larly highly: that service providers have as thoroughknowledge of the child as possible; that service providersare able to relate to the child as effectively as possible; andthat the child feels safe and supported in interactions withproviders.Example of service network diagramFigure 1Example of service network diagram. Notes: Interconnections among service providers are not shownPage 4 of 11(page number not for citation purposes)in the first round of analysis. All investigators contributedto an iterative process of theme identification and refine-ment.Knowledge of the child, according to parents, developedthrough relationships with a consistent set of service pro-BMC Health Services Research 2009, 9:242 http://www.biomedcentral.com/1472-6963/9/242viders, both in and outside of medical settings. These per-sonal relationships were augmented by writtendocumentation and records. The parents of a child withcystic fibrosis described their confidence in a consistentgroup of clinical providers in this way: "You need to see theregular faces, because they're the ones you feel at least knowyour child best," the mother said. "They know the history,"the father added, "so you feel they have the whole story."(07CF)In a similar vein, the parent of a child with spina bifidadescribed the importance of relational continuity with theperson who provides the child's orthotic appliances: "He[the orthotist] knows her. He knows her body, he knows howshe moves. He knows how the bones are growing. He has seenher since she was born and followed her." (01SB)The father of a boy with ADHD and other behavioral dif-ficulties spoke about relational continuity among theteaching and support staff at his son's school: "They knowwhat's going on. They know the history, and they're experiencedwith the history. They don't just go by hearsay or records orthings on paper. They know interpersonally what makes thisperson tick." (01ADHD)We also noted interesting instances of relational continu-ity developing outside of the generally recognized net-works of professional care. One parent, whose child hasspina bifida recognized the school bus driver as a "corecare provider" and contributor to their child and family'squality of life: "That has made our life a lot easier, because[the bus driver] knows us so well, she'll go out of her way to dothose little things that need to be done." (01SB)Parents alluded to perceived differences in the type, andperhaps quality, of the knowledge of the child acquiredthrough interpersonal contact, compared with informa-tion in written reports. The parent of a child with spinabifida said, "If someone else is just reading her file, then theydon't really know her, right, and see how she's grown and pro-gressed, or, you know, if she's getting better or worse. [Peoplewho know her] already know that sort of thing .... If someoneelse is coming in and just reading then [they] don't really knowthe whole facts." (09SB)However parents also acknowledged the role of writteninformation, especially within environments in whichthere may be a lack of relational continuity among serviceproviders. For example, the parent of a child with DMDcommented, "What has been nice is that there are such goodnotes and communication .... Somebody has taken enough timeto write down everything and the next person has taken time toread it, so they're sort of on an even par with you when theyConsistent relationships with service providers over timeare also perceived to benefit a child's sense of safetythrough contacts with providers who become familiar tothem: "It's nice when relationships do develop, you know. Kateknows the nurses [in the cystic fibrosis clinic] and she likesthem, and ... she's not scared when she goes down there. Thosefaces are familiar to her, and if she is sick, it's not scary, it's notsomebody she doesn't know." (01CF)Furthermore, service providers who know a child well areperceived by parents as better able to prevent and dealwith challenging behaviors associated with chronic neu-rodevelopmental disorders and disabilities [25]. Forexample, referring to child and youth workers, the grand-mother of a boy with ADHD and other disruptive behav-iors said, "When you've got a kid like Harry, or anybody forthat matter, that's got any kind of problems, you need consist-ency, and you can't have somebody for six months and start allover." (08ADHD)Unfortunately, continuity is often not a feature of thesekinds of relationships. As one parent pointed out: "Thedoctor is constant, but you don't see the doctor all that often andthe doctor doesn't know on a day-to-day basis what's going on.But the care providers that you have on a day-to-day basis, theychange all the time." (07DS)For this population, the concept of continuity appears tobe important across the complete network of services, notjust for medical and nursing care. Relational and informa-tional continuity interact to enable various kinds of pro-viders to acquire a thorough, almost intimate, knowledgeof the child that parents feel is needed for optimum care.Parents realize and accept that written information con-tributes to continuity of care, but knowledge garneredthrough consistency of personal contacts generates notonly a more complex, contextualized appreciation of thechild and family, but also a deeper understanding of thechild's actual clinical characteristics. Repeated personalcontact results in heightened sensitivity to physiologicaland functional changes that might be clinically relevant,but incorrectly attributed to individual variability or nor-mal developmental effects. Relational continuity alsoallows providers to anticipate and deal with behavioralchallenges more effectively, and for children to feel safeand comfortable in clinical settings.Theme 2. Continuity and communicationCommunication is recognized as an important aspect ofcontinuity in the literature [7,8,10], but there has been lit-tle description of how communication actually contrib-utes to continuity from the point of view of patients/clients. In this study, parents identified communication asPage 5 of 11(page number not for citation purposes)come in." (08DMD) an integral feature of positive experiences of continuity ofBMC Health Services Research 2009, 9:242 http://www.biomedcentral.com/1472-6963/9/242care, and described close and reciprocal links among com-munication, relationship-building, and continuity.Several parents contrasted early intervention services withtheir subsequent experiences. The parent of a child withDown syndrome said that the only communication thathappens in her son's elementary school is around his indi-vidualized educational plan (IEP)--"Otherwise nobody talksto one another as to what's going on with Sam." She con-trasted this with her past experience at the child develop-ment center for pre-school children, where there wascommunication about the child and his needs "going onoutside of the meetings ... with everybody on an ongoing basis.... You basically get a sense that his needs are being taken careof and you don't have to worry about coordinating and makingsure that you're not missing something." (07DS)The parents of a boy with ADHD lamented how commu-nication had become attenuated during the school years:"The teachers would communicate with each other. I find in thelower grades when you have a child with special needs, whenthey were changing classes, the teacher would say, you know,you're getting Frank next year .... That worked really good.When you get into middle school, they have three differentteachers ... [and] the communication gets dropped."(03ADHD)One parent summed up the link between relational conti-nuity and communication in response to a question aboutthe nature of continuity itself: "I believe that's what [conti-nuity] is. It's a relationship. A relationship is formed on com-munication, you know, and that's all that's happening betweena doctor and patient, for example ..." (08ADHD)Observations such as these extend our awareness of thebroader types of interaction and communication that con-tribute to parents' experiences of continuity, and highlighthow communication among providers appears to be afundamental element in parents' experiencing services asconnected or coordinated.Theme 3. Management continuity: seamlessness versus compartmentalizationReid et al.'s [8] notion of management continuity encom-passes an overall management plan or seamless connec-tion among all providers in the patient/client's servicenetwork. Parents' narratives highlight key differences,however, between management continuity within a partic-ular setting or service sector and continuity across settingsand sectors. Parents often described high standards andeven excellent management continuity provided bygroups of service providers based in one location. How-ever deficiencies in management continuity across set-described compartmentalized services, evoking an imageof multiple microcosms of service delivery. While each ofthese sectors could be functioning fairly well within itself,from the patient's point of view, each one is separatedfrom the others within organizational "silos" [26].Compartmentalization arose most frequently (but notexclusively) in parental accounts of poor linkage betweenthe child's school program and medical services. Parents'narratives often evoked a sense of multiple managementplans separated according to different areas of clinical-administrative responsibility, rather than an overarchingplan for the child with special needs as a whole. For exam-ple, the parent of a child with Down syndrome and med-ical, learning, and behavioral challenges said, "Luke has anIEP, and it's strictly for his education, but there's no medical[component] included in that. It's almost separated, like ... thebehavior stuff is separate from the medical." (05DS)The parents of a boy with ADHD and hearing lossdescribed their management plan as dealing with atten-tion problems with use of medication, and mentioned aseparate or different management plan for his education.Even when information was transferred across agenciesand sectors, this did not necessarily guarantee manage-ment continuity. For instance, while most of the childrenhad files at school containing clinical information thatparents perceived to be relevant to their child's educa-tional programming, this resource was under-utilized.One parent asked a teacher if she had seen her child's fileand was told, "'Oh, I prefer not to look at it, because I only seethe kids once a week, so I'd just rather deal with them as I seethem.'" (08ADHD)In another case, the mother of a child with attention,learning, and mood problems described her interactionwith a teacher about their child's plan: "And she [theteacher] says, 'Oh, he had learning assistance last year?' and Isaid 'yes,' and she said, 'Well, I haven't read his file.' How canyou help a kid when you have no idea what you're helping themwith?" (02ADHD)Later in the same interview, the father pointed out thatthis happened every year, and the mother added, "We haveto go through the whole process again. So it's a good three orfour months into school before we actually get him any kind ofmodification." (02ADHD)Compartmentalization was also described within a partic-ular sector, evoking the image of silos within silos. Theparent of a child with cystic fibrosis and permanent hear-ing loss noted that, "Most of her stuff is [cystic fibrosis] stuffPage 6 of 11(page number not for citation purposes)tings, agencies, teams, or administrative service sectorswere commonly identified. Their narratives frequentlyand then there's the hearing thing, but that's not a doctor thing,that's more of a rehabilitation, audiology, speech therapy, andBMC Health Services Research 2009, 9:242 http://www.biomedcentral.com/1472-6963/9/242that kind of thing. The two aren't really related, except whenher delayed language might interfere with what a child her agecan do in terms of their own care, because you can't reallyexplain it to them." (04CF)Geography also emerged as a factor contributing to com-partmentalization. Describing her perceptions of the con-nectedness of a specialized multidisciplinary hospitalclinic and the physicians and other professionals in thechild's home community, one parent of a child with cysticfibrosis said, pointing to different parts of the diagram ofservice providers, "Basically, I see the clinic is here, and thedoctors are here. They touch [pause], they touch [pause]. That'sit. And it's not enough. They just kind of touch on the surface."(07CF)The mother of another child with cystic fibrosis, referringto the diagram of service providers, explained, "There's acrease down the middle of the paper and I feel this half [theclinic professionals in Vancouver] deals really well with eachother, and this half [the people who work in the child's hometown] deals really well with each other." The father added,"You could almost call the crease a wall between the two."(05CF)As noted above, management continuity typically refers toconnectedness among multiple service providers andpatient/clients in the planning and providing of services.For parents of children with complex chronic health con-ditions, results from our study illustrate that the notion ofmanagement continuity could be extended to include theplanning and information necessary to ensure health forthe child in a more holistic sense. This point was illus-trated by the parent of a child with spina bifida who hada motor disability, but who loved to ride a modified bike.She described problems she experienced getting the clinicto support the acquisition of a special bicycle: "For her [thechild, in the eyes of the clinicians], it's just her medical care.Nothing to do with her emotional care, her quality of life."(05SB)Similarly, parents found it deeply frustrating not to beprovided with sufficient information about services toaddress their range of needs. "I think the individual healthcare workers do a good job," the parent of a child with Downsyndrome said. "I mean, they do their work in their particulararea and there's nobody really coordinating their work together.I see it as all the other stuff [social services and supports] thatgoes along with it that makes it all complicated and difficult."(06DS)The parent of a child with DMD said, "Not only are youdealing with your child, you're dealing with the disease. You'reyour family, but you're also having to search, in all these differ-ent areas, for help." (07DMD)The ideal of management continuity for patients and fam-ilies, across and within sectors and settings, is thereforechallenged by entrenched structural, procedural, and atti-tudinal forces within and between organizations and pro-viders.Theme 4. Parents working to ensure continuityParents frequently described the central, indispensablerole they play in compensating for the systemic lack orbreakdown of management continuity. They struggle toensure and maintain continuity and coordination amonga varied and disparate group of services. They provideinformational continuity across geographically dispersedsystems and between service sectors, acting at times as aconduit between different providers and institutions.They also serve as proxies for absent professional playersand points of view at school, social or clinical servicesplanning meetings, often physically carrying reportsacross professional settings.The parent of a child with cystic fibrosis recalled theresponsibility she felt for her daughter's care in a smallcommunity hospital: "It was chaotic and frustrating, andnobody seemed to know what they were doing, and nobody wascalling the specialized clinic at the Children's Hospital to findout what should be done. Then when we got down to the [pro-vincial] Children's Hospital, they took it over from me, I didn'thave to worry about it, it was all taken care of. I could just dealwith Kate, and I didn't have to try and coordinate and makesure she was taking the right pills, they were doing this, and Ididn't feel like I had to be in charge, like I did at the other hos-pital [where] I felt like they were going to do something thatthey shouldn't do, because they didn't know".(01CF)Parents also reported having to play this role due to break-downs in informational continuity between regular pro-viders. The parent of a child with ADHD described follow-up visits to the family physician: "Dr F [family physician]will look through his papers, and Dr P [pediatrician] hasn'tsent him an update. So I'm updating him. And I don't reallyfeel like that's my job to be doing that. It's between doctors tobe doing that ... I don't have the wording that she does, beinga pediatrician, to give Dr F. So I could omit stuff, or, it's notproper." (11ADHD)The father of a boy with ADHD said: "I am the in-betweenguy. I am the guy that goes to the doctors and takes George andgets the meds, and well, the teachers told me this, and then theywant to know what I see, and then the doctor comes up with theplan on what to do." (01ADHD)Page 7 of 11(page number not for citation purposes)dealing with the frustration of trying to get some kind of help,guidance, expert advice, and it's like two big jobs. You're find-ing out as much as you can about the disease and looking afterThe parent of a child with Down syndrome explained thesignificance of the intermediary role parents play: "It's veryBMC Health Services Research 2009, 9:242 http://www.biomedcentral.com/1472-6963/9/242important for parents to know and to realize that they have torelay information, because other people may not have thatinformation, right? Because even though the report may besent, it may not be read. Or maybe the medication that was pre-scribed isn't in the report. Who knows, right? So, as the parent,you have to inform everybody about everything." (10DS)Some parents felt that service coordination was a criticalrole that parents should be comfortable with and skilledin, while others found it distressing. All, however, men-tioned that this function was necessary to their child'soptimum health and development; if parents did not doit, they did not know who would.Theme 5. Parents limiting continuityParents mitigate and compensate for the systemic break-downs of relational, informational, and managementcontinuity in the service system. At times, however, par-ents themselves create limits or impediments to continu-ity. While parents would sometimes express support for acompletely seamless integration of ideas, information,and knowledge across settings, they also expressed a pref-erence, or offered rationalizations, for some limits andcontrol over the flow of information. Thus, the father of aboy with DMD said that he would like there to be one sys-tem, to which everyone could add information and haveaccess; but later in the interview, the child's mother said,"I don't want them to send [reports from the hospital] to theschool. The school doesn't need to know until I think they needto know, and then I can tell them." (05DMD)Parents may also seek to regulate the flow of informationbetween settings and providers whom they perceive as dif-fering in their need for information about the child and/or family. These decisions are based on their own apprais-als of which providers require more collaboration andcommunication. They also try to regulate their demandson professionals' time. The parent of a boy with Downsyndrome and related ear and hearing problems talkedabout ensuring that the audiology reports go to theotolaryngologist, because he needs them, whereas thepediatrician probably doesn't: "Are you just going to bogthese people down with information and stuff that they don'tneed? Basically that's what we're doing, is making sure that theinformation is flowing that is necessary to flow." (06DS)Similarly, the grandparents of a child with ADHD andassociated behavioral and learning difficulties felt that itprobably wasn't necessary for the child's IEP to be sent tothe doctors: "There's enough people involved," the grandfa-ther said, "... and they're busy enough anyway ..." (12ADHD)Research concerning the factors and circumstances thatents' concerns (e.g. the selective distribution of informa-tion) is needed with the advent of models of serviceorganization that emphasize greater integration betweenservice providers, and the increasing availability of elec-tronic health records and other technological tools toshare information among providers.Theme 6. Systemic and organizational barriers to continuityKey developmental transition points of childhood wereoften described by parents as events that cause changes inhow services are organized. This often resulted inincreased fragmentation of care, causing distress for par-ents. Children would "age out" of eligibility for certainprograms, particularly rehabilitative and supportive serv-ices, leaving parents facing a lack of comparable servicesfor older children, or a lack of coherence between the ear-lier and later programs. The parents of two different chil-dren with Down syndrome described the loss of earlyintervention services. The first explained that the provin-cial Infant Development Program (for 0-3-year-olds) pro-vided information and coordinated the speech, physical,and occupational therapies. "Once she hit three, though, allof that stuff fell apart, basically," she said, "Because then itwas done through the local child development center, and [afterthat] it was all up to me ..." (10DS)The second parent described the transition to the schoolsystem: "To me, it was like you were cut off from life. You turnsix, that's it. You're gone. When they do it from zero to six, theycoordinated. They stayed on top of it, they tell you what theyneed. As soon as they get into the school system ... I'm not evensure who coordinates it then." (07DS)Caregivers also described situations marked by lack ofcontinuity stemming from overlapping and conflictingorganizational mandates. The grandmother of a boy withADHD and learning problems described the difficulty ofdealing with the many "different areas" of social services:"My biggest complaint about all of the resources is that theydon't talk to each other. They truly don't talk to each other...And, every time, even if there's a worker who changes, you haveto start right from the very, very beginning ..." The child'sgrandfather added, "The funding for the worker was comingfrom one place, and the funding for the daycare was comingfrom another place, and that was not coordinated well at all."(12ADHD)The policy environment is known to be an important fac-tor in enabling or obstructing continuous and coordi-nated care at the system level [27,28]. Evidence about howthese factors affect the day to day experience of childrenwith complex chronic conditions and their parents addsPage 8 of 11(page number not for citation purposes)affect how parents (and patients) regulate informationalcontinuity is limited. But a clearer understanding of par-immediacy to the need to address the policy problems.BMC Health Services Research 2009, 9:242 http://www.biomedcentral.com/1472-6963/9/242ConclusionsTheoretical constructs about the care of adult patientshave dominated the discourse on continuity of care. Ouranalysis of the narratives and comments of parents of chil-dren with complex chronic health conditions thereforecontributes to a relatively under-explored area of healthservices research. We identified six themes in parents'accounts that collectively represent salient aspects of par-ent's experiences and perceptions. Evidence from ourinterviews provides insight into the two key research ques-tions we initially posed. First, we see that the key concep-tual categories used to describe continuity of care in theadult and academic literature, are relevant for the analysisof the experiences of these parents. Though the terms rela-tional, informational and management continuity are nottypically part of parents' lexicons, these constructs wereseen to be analytically useful in delineating aspects of par-ents' experiences of care. Second, our analysis reveals abroader and more complex conceptualization of care andcontinuity by the parents, than that framed by the litera-ture. Parents' comments and observations illuminateddynamic interdependencies among the three types of con-tinuity, as well as elements of experiencing care that areparticularly, and in some cases, uniquely pertinent to per-ceptions of continuity and connectedness of care and serv-ices for this population.Relational continuity was perceived as integral to thebuilding of trusting, reassuring, and effective relationshipswith service providers, underpinned by a thoroughknowledge of the child. Knowledge of the child, devel-oped over time, emerged in this study as something par-ents saw as extremely important in their child's serviceproviders. Parents appreciated the role of written informa-tion in creating bridges and continuity between providers,but pointed out differences in the kind or quality ofknowledge and understanding of the child that isacquired through ongoing interpersonal contacts--aninsight that has been previously noted by providers [6].Informational continuity posed particular challenges forparents, as they stepped in to ensure this in the face of fre-quent systemic deficiencies and breakdowns. They per-ceive this as a necessary, if not always a welcome orcomfortable, role for themselves.Management continuity, was presented in parents' narra-tives as a contrast between idealized seamless and coordi-nated care on the one hand [29], and the realities ofcompartmentalized services, on the other. The compart-mentalization that parents described seems more likely tooccur between different kinds of teams working in differ-ent settings and service sectors. Conversely, parents per-ceived communication to be a core component of, andoccurs across geographic settings and administrative sec-tors, given time pressures, differences in "culture" and pri-orities, and the many other factors complicating thenavigation of health care services [27].Our findings suggest that, from the perspective of thepatient/client/parent, continuity among multiple provid-ers from different disciplines is possible, but that it seemsto work best when there is collocation and functionalintegration of team players responsible for providing afunctionally related set of services. These impressions areconsistent with previous studies in which functional andfinancial integration [30], collocation of service providers[31], and interprofessional learning [32,33], all contrib-ute to achieving more integrated models of health andsocial care, and improved communication and collabora-tion among diverse service providers.Continuity of care has usually been approached as anaspect or dimension of health services referring to medicaland nursing care. A critical implication of our study find-ings is that relational, informational, and managementcontinuity should not be limited to physicians and nurses.We asked parents to describe their interactions with all theservice providers needed for the child to achieve optimalhealth status, which, according to contemporary formula-tions, includes the child's subjective well-being and abilityto perform daily activities and participate socially athome, in school, and in their communities [34]. Theirnarratives suggested the need for continuity to embracethis whole array of service providers. For this reason, thenotion of "continuity of care" should perhaps be moreaccurately formulated as "continuity of services" for thispopulation. Furthermore, connectedness between differ-ent kinds of intervention and supportive services and pro-viders is experienced by parents not simply as a functionof convenience or efficiency, but as an integral part of howthe service system can help children and families cope. Inthis way, continuity is a key component of the "child-in-family" approach to chronic childhood illness and disa-bility that is increasingly accepted as the standard of carefor this population [15].Our findings are a reminder of some major issues and bar-riers that face current efforts to promote more integrated,coordinated, and child-and-family-centered models ofcare. They emphasize that service delivery models remainfor the most part organized around the priorities of organ-izations and institutions, rather than those of families.The parents in our study who mentioned, for example, thevalue to the family of relational continuity with the schoolbus driver, or of a specially modified bicycle for theirdaughter, illustrate the incongruity between the servicePage 9 of 11(page number not for citation purposes)contributor to, continuity. A challenge, therefore, is toensure that meaningful and effective communicationsystem's traditional organizational notion of care, and theservices and supports that parents may perceive as impor-BMC Health Services Research 2009, 9:242 http://www.biomedcentral.com/1472-6963/9/242tant. Similarly, administrative compartmentalization,funding polices that result in "aging out" of supportiveservices and programs, and constricted attitudes on thepart of providers, all have a major impact on the ability ofthe parents to deal with the child and family's needs in acoherent and comprehensive way.Certain findings from this study are relevant to the devel-opment of new models of care that emphasize coordi-nated services built around child and family needs[15,28,35], and care/service coordination strategies, suchas provision of "key workers" [36,37]. Most parents wereactively engaged in coordinating care for their children,and these important efforts warrant recognition and sup-port. At the same time, parents brought different kinds ofpersonal resources to this role. Some are better equippedand more comfortable with this role than others, and attimes parents preferred just to be parents rather than semi-professional care coordinators. Some families may there-fore need and welcome the support of a key worker morethan other families, or at certain times more than others.Our study suggests that the responsibility for care coordi-nation needs to be a negotiated interaction between serv-ice providers and family members and apportioned in away that is most appropriate and supportive for each fam-ily.We also observed how parents-as-clients may themselvesplay a critical role in channeling and managing the flow ofinformation and communication in ways that sometimesmay create and maintain separation and boundariesbetween service providers. Efforts to redesign service sys-tems that emphasize coordination and continuity of careand services, within the broad objective of patient-cen-tered (or in this study, family-centered) care, such as the"Medical Home" [35] or implementation of comprehen-sive electronic health records that links service providersacross agencies and administrative silos, will need to beaware of and acknowledge parents' varying attitudestoward comprehensive and seamless models of informa-tional and management continuity. Recent calls to vestownership of the medical record in the hands of patients(or parents) as part of true patient-centeredness in healthcare [38] add further urgency to this issue.The study had certain limitations. First, our recruitmentstrategy may have over-sampled families who were receiv-ing hospital-based multidisciplinary care or connectedwith disease advocacy organizations. It is possible, there-fore, that other points of view on continuity of servicesand its value were not as well represented. Also, in spite ofsuccess in recruiting families from diverse geographic andsocio-economic backgrounds, we were able to enroll onlyertheless additional insight is needed on how suchbarriers may erode continuity of care for children amongvulnerable or ethnically diverse populations.Despite these potential limitations, the narratives of par-ents of children with complex chronic conditions and dis-abilities add an important and previously missing patientor parent-as-mediator voice and thus perspective to aca-demic and clinical discourse in the field of continuity ofcare (or continuity of services). These narratives are rele-vant to short- and longer-term efforts to improve servicedelivery and organization for this as well as other relatedclinical populations, and also point to avenues of researchneed.Competing interestsThere are no competing financial or commercial interests.ARM is involved in provincial and national initiatives toimprove services for children and youth with complexhealth conditions and disabilities through improved serv-ice coordination and other strategies. NS is involved inresearch into continuity of care and continuity of informa-tion.Authors' contributionsAM conceived of the study, oversaw and coordinated allits phases, and took the lead in drafting the manuscript.All the authors participated in the design of the study, theanalysis and interpretation of the data, and in writing andrevising the manuscript. CJC was instrumental in data col-lection and organization.Additional materialAcknowledgementsThe authors are grateful to the families for generously giving of their time and themselves, the various hospital clinics, organizations and community practitioners that assisted with recruitment, and to Jane Shen for her con-tributions to the organization of the data and the manuscript. We also gratefully acknowledge funding support for this project from the BC Medi-cal Services Foundation and Michael Smith Foundation for Health Research. Anton Miller's contribution to this work was supported by an Investigator Research Award from the Sunny Hill Foundation. Nicola Shaw and Anne Klassen are the recipients of CIHR New Investigator Awards.ReferencesAdditional file 1Appendix. 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