"We Don't Want to Live Like This": The Lived Experience of Dislocation, Poor Health, and Homelessness for Western Australian Aboriginal People.

Many policy interventions have attempted to address the entrenched disadvantage of Aboriginal Australians1; however, sustained improvement in social, cultural, physical, and emotional well-being is not evident. This disadvantage is compounded by paternalistic practices which do not promote Aboriginal self-determination or empowerment. This article presents the lived experience and voice of Aboriginal Australians spending time in parks in Perth, Western Australia. A community-based participatory action research approach informed by critical Indigenous methodologies involving collaboration between Aboriginal and non-Aboriginal service providers was used. Participants experienced disconnection from kin and country, serious risk to personal safety, homelessness, and problematic health; all related to, and intersecting with, time spent in the parks. The participants' narratives highlight the enduring impacts of colonization, dispossession, and racism. These lived experiences are situated within contexts of rising moral panic from politicians, residents and mass media, and siloed policy and service delivery responses.

Variation in lung function as a marker of adherence to oral and inhaled medication in cystic fibrosis.

The aim of this study was to characterise adherence in an adult population with cystic fibrosis (CF) and to investigate if variation in lung function was a predictor of adherence to treatment.The adherence of patients aged ≥16 years from an adult CF centre was measured by medication possession ratio (MPR) and self-report. Patients were assigned to one of three adherence categories (<50%, 50 to <80%, ≥80%) by their composite score (MPR). Ordinal regression was used to identify predictors of adherence, including coefficient variation measures for forced expiratory volume in 1 s (FEV1), weight and C-reactive protein concentration, measured from 6 months and 12 months before baseline.MPR data for 106 of 249 patients (mean age 29.8±9.2 years) was retrieved, indicating a mean adherence of 63%. The coefficient of variation for FEV1 was inversely related to adherence and was a univariate predictor of adherence (6 months: OR 0.92, 95% CI 0.87-0.98, p=0.005; 12 months: OR 0.94, 95% CI 0.93-0.99, p=0.03) and remained significant in the final models. The coefficient of variation of weight and C-reactive protein were not predictive of adherence.The coefficient of variation of FEV1 was identified as an objective predictor of adherence. Further evaluation of this potential marker of adherence is now required.

Clinical Decision Support Tools for Selecting Interventions for Patients with Disabling Musculoskeletal Disorders: A Scoping Review.

Purpose We aimed to identify and inventory clinical decision support (CDS) tools for helping front-line staff select interventions for patients with musculoskeletal (MSK) disorders. Methods We used Arksey and O'Malley's scoping review framework which progresses through five stages: (1) identifying the research question; (2) identifying relevant studies; (3) selecting studies for analysis; (4) charting the data; and (5) collating, summarizing and reporting results. We considered computer-based, and other available tools, such as algorithms, care pathways, rules and models. Since this research crosses multiple disciplines, we searched health care, computing science and business databases. Results Our search resulted in 4605 manuscripts. Titles and abstracts were screened for relevance. The reliability of the screening process was high with an average percentage of agreement of 92.3 %. Of the located articles, 123 were considered relevant. Within this literature, there were 43 CDS tools located. These were classified into 3 main areas: computer-based tools/questionnaires (n = 8, 19 %), treatment algorithms/models (n = 14, 33 %), and clinical prediction rules/classification systems (n = 21, 49 %). Each of these areas and the associated evidence are described. The state of evidentiary support for CDS tools is still preliminary and lacks external validation, head-to-head comparisons, or evidence of generalizability across different populations and settings. Conclusions CDS tools, especially those employing rapidly advancing computer technologies, are under development and of potential interest to health care providers, case management organizations and funders of care. Based on the results of this scoping review, we conclude that these tools, models and systems should be subjected to further validation before they can be recommended for large-scale implementation for managing patients with MSK disorders.

Computerisation in general practice: lessons for Canada from the UK and Australia.

In 2000 Shaw and Kidd published an article on the lessons that could be learned from the UK in general practice computerization. Over a decade later many of these lessons remain yet to be learned. Hence Shaw & Bainbridge felt that it was time to revisit these issues and review progress made against each in both the UK and Australia in an effort to help Canada learn the lessons as it follows behind both countries. Nine lessons are identified, reviewed and discussed in the hope that Canada will choose to take note and leapfrog these jurisdictions by learning from history, rather than being doomed to repeat it.

Starting out rural: a qualitative study of the experiences of family physician graduates transitioning to practice in rural Ontario.

BACKGROUND: New family medicine graduates are a promising group to recruit to underserved rural areas. This study aimed to understand the experiences of this group as they transitioned to practice in rural Ontario. METHODS: We used a hermeneutic phenomenology approach. Purposive sampling was used to recruit participants who graduated from a Canadian family medicine residency program and worked in a rural community in Ontario (Rurality Index for Ontario score ≥ 40) for at least 1 year within the past 5 years. Participants completed an online demographic survey followed by a virtual semistructured interview (May-August 2022). Interviews were video recorded and transcribed. Two researchers reviewed transcripts for codes, and then codes were reviewed in an iterative process to create themes. Transcripts, codes and themes were reviewed by an independent researcher, and final themes were shared with participants to ensure reliability. RESULTS: We included 18 family physicians in the study. We identified 8 themes and 18 subthemes. The themes identified as important to the experience of new graduates were as follows: choosing rural practice, preparedness for practice, navigating work-life balance, navigating transition to practice, challenges during transition to practice, successes during transition to practice, locuming and emergency medicine as part of rural generalist practice. INTERPRETATION: Most physicians interviewed felt prepared for rural practice and enjoyed their work; however, they faced unique challenges associated with being an early-career physician in rural practice. This study identifies opportunities for improvements, which can guide medical educators, rural communities and their recruiters, new graduates and policy-makers.

Immigrant to Canada, newcomer to childhood cancer: a qualitative study of challenges faced by immigrant parents.

BACKGROUND: Given the increasing numbers of immigrant families in Canada, it is imperative that healthcare providers (HCPs) understand the caregiving experiences of immigrant family caregivers. Our study aimed to explore any special challenges faced by immigrant parents of children with cancer and to identify supportive factors. METHODS: A constructivist grounded theory approach was used. Participants included 50 first generation Chinese and South Asian parents of children with cancer who were at least six months post-diagnosis. Recruitment took place at six Canadian pediatric oncology centres. Interviews were conducted in English, Cantonese, Mandarin, Urdu, Punjabi or Hindi. Analysis involved coding and the use of the constant comparison method. Interviewing continued until no new themes emerged. RESULTS: While immigrant parents described many challenges faced by any parent of a child with cancer, the context of being an immigrant made certain experiences particularly challenging. Parents described challenges in the following areas: managing caregiving demand and financial strain, accessing support from others, and interfacing with the healthcare system. Parents described receiving a range of practical, emotional, social and informational support from extended family, their workplace, other cancer families, community organizations and HCPs. CONCLUSIONS: Our study addresses an important gap in the research literature by providing practical insight into the experiences of immigrant family caregivers. Our findings may help to inform the development of pediatric oncology policies and programs in ways that respond to the unique needs and challenges of culturally and linguistically diverse families.

Identification by families of pediatric adverse events and near misses overlooked by health care providers.

BACKGROUND: Identifying adverse events and near misses is essential to improving safety in the health care system. Patients are capable of reliably identifying and reporting adverse events. The effect of a patient safety reporting system used by families of pediatric inpatients on reporting of adverse events by health care providers has not previously been investigated. METHODS: Between Nov. 1, 2008, and Nov. 30, 2009, families of children discharged from a single ward of British Columbia's Children's Hospital were asked to respond to a questionnaire about adverse events and near misses during the hospital stay. Rates of reporting by health care providers for this period were compared with rates for the previous year. Family reports for specific incidents were matched with reports by health care providers to determine overlap. RESULTS: A total of 544 familes responded to the questionnaire. The estimated absolute increase in reports by health care providers per 100 admissions was 0.5% (95% confidence interval -1.8% to 2.7%). A total of 321 events were identified in 201 of the 544 family reports. Of these, 153 (48%) were determined to represent legitimate patient safety concerns. Only 8 (2.5%) of the adverse events reported by families were also reported by health care providers. INTERPRETATION: The introduction of a family-based system for reporting adverse events involving pediatric inpatients, administered at the time of discharge, did not change rates of reporting of adverse events and near misses by health care providers. Most reports submitted by families were not duplicated in the reporting system for health care providers, which suggests that families and staff members view safety-related events differently. However, almost half of the family reports represented legitimate patient safety concerns. Families appeared capable of providing valuable information for improving the safety of pediatric inpatients.

Communication and language challenges experienced by Chinese and South Asian immigrant parents of children with cancer in Canada: implications for health services delivery.

BACKGROUND: Language is an important aspect of health literacy and plays a vital role in families' ability to access and use health information and resources. Our study explored the role of communication and language in the healthcare experiences of immigrant parents of children with cancer living in Canada. PROCEDURE: We used a grounded theory approach. Chinese and South Asian parents of children 6 months post-diagnosis were recruited from six Canadian pediatric oncology centers. Semi-structured interviews were conducted in Cantonese, Mandarin, Hindi, Punjabi, Urdu, or English. Questions relevant to communication included: how parents navigated the healthcare system; nature of interpreter services and translated materials; and suggestions about how to improve services. Analysis involved line-by-line, focused and theoretical coding, and constant comparison. RESULTS: Thirty-one (62%) parents reported no difficulty communicating with healthcare providers in English, while 13 (26%) parents struggled with English, and six (12%) parents could not communicate in English. Communication challenges influenced parents' role in caring for their child and made it difficult to learn complex medical terminology. Interpreting services were sometimes inadequate or not accessible. Parents occasionally missed out on services and resources, reported limited availability of linguistically and culturally appropriate information, and experienced a lack of social integration in the healthcare process. CONCLUSION: Language ability played an essential role in parents' healthcare experiences for pragmatic and social purposes. Language challenges can heighten systemic and socio-cultural barriers to accessing health information and resources. The provision of enhanced culturally and linguistically sensitive services may support immigrant families in their caregiving role.

Perceptions about complementary and alternative medicine use among Chinese immigrant parents of children with cancer.

PURPOSE: Research indicates complementary and alternative medicine (CAM) use among children with cancer is common and widespread. CAM use, particularly traditional Chinese medicine (TCM), is prevalent in the country of origin of Chinese immigrant families, yet little is known about its use after immigrating to Canada. This paper describes 25 Chinese immigrant parents' perception about the use of CAM in their child with cancer in Canada. METHODS: This qualitative grounded theory study is part of a larger study of the caregiving experiences of first generation Chinese and South Asian parents of children with cancer. Chinese parents of children at least 6 months post-diagnosis were recruited from four Canadian pediatric oncology centers. Interviews were conducted in English, Cantonese, or Mandarin and transcribed into English. Analysis involved coding and the use of the constant comparison method to identify important themes. RESULTS: In discussing their caregiving experiences, CAM emerged as an important theme. The following sub-themes were identified: (1) trust in conventional medicine to cure cancer; (2) use of dietary modifications and restrictions; (3) extent of communication with healthcare providers about TCM use; and (4) limited availability of culturally relevant information. CONCLUSIONS: While Chinese immigrant parents in this study placed their trust in conventional medicine to treat their child, the use of food as therapy is part of their daily cultural practice. To ensure safe cancer treatment and more culturally sensitive care, it is essential for health providers to offer reliable information and encourage open discussions about CAM use with Chinese immigrant parents.

Understanding the health impact of caregiving: a qualitative study of immigrant parents and single parents of children with cancer.

PURPOSE: Research looking at the health of parents of children with cancer typically uses outcome measures focused on symptoms of anxiety, depression, or post-traumatic stress. Our team builds on this literature to provide a more comprehensive understanding of the health impact of caregiving. METHODS: Interviews were conducted with 79 Canadian parents of children with cancer at least 6 months post-diagnosis. Line-by-line coding was used to establish categories and themes. Constant comparison was used to examine relationships within and across codes and categories. Interviewing continued until no new themes emerged. RESULTS: Parents described health concerns as including sleep disturbance, daytime fatigue, anxiety, depression, social isolation, and changes in social roles. Parents described the positive impacts of caregiving as including gaining a greater appreciation for child and family and developing compassion, empathy, patience, inner strength, and new perspectives on life. CONCLUSION: Parents of children with cancer can experience a range of health problems due to the emotional impact of a cancer diagnosis and the intensive and often prolonged nature of treatment and aftercare. Given the central role parents play as caregivers, it is crucial to understand the health impact of caregiving so that supportive interventions can be implemented as necessary.

Users' perspectives of key factors to implementing electronic health records in Canada: a Delphi study.

BACKGROUND: Interoperable electronic health record (EHR) solutions are currently being implemented in Canada, as in many other countries. Understanding EHR users' perspectives is key to the success of EHR implementation projects. This Delphi study aimed to assess in the Canadian context the applicability, the importance, and the priority of pre-identified factors from a previous mixed-methods systematic review of international literature. METHODS: A three-round Delphi study was held with representatives of 4 Canadian EHR user groups defined as partners of the implementation process who use or are expected to use EHR in their everyday activity. These groups are: non-physician healthcare professionals, health information professionals, managers, and physicians. Four bilingual online questionnaire versions were developed from factors identified by the systematic review. Participants were asked to rate the applicability and the importance of each factor. The main outcome measures were consensus and priority. Consensus was defined a priori as strong (≥ 75%) or moderate (≥ 60-74%) according to user groups' level of agreement on applicability and importance, partial (≥ 60%) when participants agreed only on applicability or importance, or as no consensus (< 60%). Priority for decision-making was defined as factors with strong consensus with scores of 4 or 5 on a five-point Likert scale for applicability and importance. RESULTS: Three Delphi rounds were completed by 64 participants. Levels of consensus of 100%, 64%, 64%, and 44% were attained on factors submitted to non-physician healthcare professionals, health information professionals, managers, and physicians, respectively. While agreement between and within user groups varied, key factors were prioritized if they were classified as strong (≥ 75% from questionnaire answers of user groups), for decision-making concerning EHR implementation. The 10 factors that were prioritized are perceived usefulness, productivity, motivation, participation of end-users in the implementation strategy, patient and health professional interaction, lack of time and workload, resources availability, management, outcome expectancy, and interoperability. CONCLUSIONS: Amongst all factors influencing EHR implementation identified in a previous systematic review, ten were prioritized through this Delphi study. The varying levels of agreement between and within user groups could mean that users' perspectives of each factor are complex and that each user group has unique professional priorities and roles in the EHR implementation process. As more EHR implementations in Canada are completed it will be possible to corroborate this preliminary result with a larger population of EHR users.

Comparison of user groups' perspectives of barriers and facilitators to implementing electronic health records: a systematic review.

BACKGROUND: Electronic health record (EHR) implementation is currently underway in Canada, as in many other countries. These ambitious projects involve many stakeholders with unique perceptions of the implementation process. EHR users have an important role to play as they must integrate the EHR system into their work environments and use it in their everyday activities. Users hold valuable, first-hand knowledge of what can limit or contribute to the success of EHR implementation projects. A comprehensive synthesis of EHR users' perceptions is key to successful future implementation. This systematic literature review was aimed to synthesize current knowledge of the barriers and facilitators influencing shared EHR implementation among its various users. METHODS: Covering a period from 1999 to 2009, a literature search was conducted on nine electronic databases. Studies were included if they reported on users' perceived barriers and facilitators to shared EHR implementation, in healthcare settings comparable to Canada. Studies in all languages with an empirical study design were included. Quality and relevance of the studies were assessed. Four EHR user groups were targeted: physicians, other health care professionals, managers, and patients/public. Content analysis was performed independently by two authors using a validated extraction grid with pre-established categorization of barriers and facilitators for each group of EHR users. RESULTS: Of a total of 5,695 potentially relevant publications identified, 117 full text publications were obtained after screening titles and abstracts. After review of the full articles, 60 publications, corresponding to 52 studies, met the inclusion criteria. The most frequent adoption factors common to all user groups were design and technical concerns, ease of use, interoperability, privacy and security, costs, productivity, familiarity and ability with EHR, motivation to use EHR, patient and health professional interaction, and lack of time and workload. Each user group also identified factors specific to their professional and individual priorities. CONCLUSIONS: This systematic review presents innovative research on the barriers and facilitators to EHR implementation. While important similarities between user groups are highlighted, differences between them demonstrate that each user group also has a unique perspective of the implementation process that should be taken into account.

Validation of the Work Observation Method By Activity Timing (WOMBAT) method of conducting time-motion observations in critical care settings: an observational study.

BACKGROUND: Electronic documentation handling may facilitate information flows in health care settings to support better coordination of care among Health Care Providers (HCPs), but evidence is limited. Methods that accurately depict changes to the workflows of HCPs are needed to assess whether the introduction of a Critical Care clinical Information System (CCIS) to two Intensive Care Units (ICUs) represents a positive step for patient care. To evaluate a previously described method of quantifying amounts of time spent and interruptions encountered by HCPs working in two ICUs. METHODS: Observers used PDAs running the Work Observation Method By Activity Timing (WOMBAT) software to record the tasks performed by HCPs in advance of the introduction of a Critical Care clinical Information System (CCIS) to quantify amounts of time spent on tasks and interruptions encountered by HCPs in ICUs. RESULTS: We report the percentages of time spent on each task category, and the rates of interruptions observed for physicians, nurses, respiratory therapists, and unit clerks. Compared with previously published data from Australian hospital wards, interdisciplinary information sharing and communication in ICUs explain higher proportions of time spent on professional communication and documentation by nurses and physicians, as well as more frequent interruptions which are often followed by professional communication tasks. CONCLUSIONS: Critical care workloads include requirements for timely information sharing and communication and explain the differences we observed between the two datasets. The data presented here further validate the WOMBAT method, and support plans to compare workflows before and after the introduction of electronic documentation methods in ICUs.

Critical care providers refer to information tools less during communication tasks after a critical care clinical information system introduction.

Electronic documentation methods may assist critical care providers with information management tasks in Intensive Care Units (ICUs). We conducted a quasi-experimental observational study to investigate patterns of information tool use by ICU physicians, nurses, and respiratory therapists during verbal communication tasks. Critical care providers used tools less at 3 months after the CCIS introduction. At 12 months, care providers referred to paper and permanent records, especially during shift changes. The results suggest potential areas of improvement for clinical information systems in assisting critical care providers in ensuring informational continuity around their patients.

What are the barriers to conducting international research using routinely collected primary care data?

BACKGROUND: Primary care is computerized with routine data recorded at the point or care. Secondary use of these data includes: genetic study, epidemiology and clinical trials. However, there are relatively few international studies. OBJECTIVE: To identify the concepts that might predict readiness to collaborate in international research using routinely collected primary care data METHOD: Literature review and data gathering exercise, from international Primary Care Informatics working group workshops, and email modified Delphi exercise. RESULTS: To establish whether primary care data are fit for use in a collaborative study information is needed at the micro-, meso-, and macro-level. At the micro- or data level we need to use documented standards for interoperability, computerized records, to facilitate linkage of data. At the meso-level we need to understand the nature of the electronic patient record (EPR) and specific study requirements. At the macro-level: health system, social and cultural context constrain what data are available. The framework defines the information needed at the point of expression of interest, and joining a study. The initial assessment of readiness should be by self-assessment followed by an in depth appraisal more immediately prior to the start of the study. Finally, a sensitivity analysis should be conducted to test the robustness of the data model. CONCLUSIONS: The literature focuses on technical issues: interoperability, EPR and modeling; the workshops on socio-cultural and organizational. This framework will form the basis for developing a survey instrument of the initial assessment of readiness for collaboration in international research.

Optimising the care and quality of life of people with cystic fibrosis: the influence of cystic fibrosis transmembrane conductance regulator modulators.

Cystic fibrosis is a life-limiting, inherited, multi-organ disease which affects many systems of the body. Until recently, treatments were only able to ameliorate symptoms, but the introduction of precision medications which modulate the underlying defect in the cystic fibrosis transmembrane conductance regulator (CFTR) gene has changed this. Notably improvements in nutrition and lung function, reduced use of antibiotics and reduced occupation rates for hospital beds have been seen. This article summarises the discussion of a group of healthcare professionals from different specialties and an expert patient, representing their personal views and experience of treating patients who are using CFTR modulators. The discussion was sponsored by an unrestricted grant from Chiesi Limited (Manchester, UK).

Medical education & health informatics: time to join the 21st century?

This paper reports a component of a larger study, Informatics: enhancing the Clinical Experience? (ICE), which explored the impact on the therapeutic relationship of the implementation and use of Electronic Medical Records (EMR) in British Columbia, Canada. As anticipated, EMRs were found to negatively affect the relationship in many clinics. However, surprisingly paper-based clinics were as likely as EMR-based clinics to report problems with maintaining eye contact with their patients. This led to an interesting finding; that as a result of this difficulty few family care providers actually chart when their patients are with them, preferring to build rapport and chart at a later time. Consequently three recommendations are made: 1) Improve medical education in the area of charting (paper & EMR-based) with the patient present; 2) Explore the affect different technologies and skills have on the ability of providers to chart with the patient present and 3) Develop an understanding that unless the technology and training improve Canadian family medicine will never gain the asserted benefits of EMRs, and that other incentives are needed if Canada is to meet its target of delivering Electronic Health Records (EHR) to 100% of all Canadians by 2015.

A conceptual framework for analyzing how Canadian physicians are using electronic medical records in clinical care.

Our electronic medical record (EMR) case study research pursued a set of questions to provide Canadian physicians with practical information on best practices and lessons learned regarding implementation and use of EMRs in ambulatory clinical care. The study's conceptual framework included an EMR System and Use Assessment Survey, interview guide, transcription codes, observation guide and case study report template. The common message that emerged was that no clinic would return to paper-based charts after experiencing the benefits of EMR. In seeking to corroborate our findings with success factors in an EMR implementation meta-framework, we further investigated the role of information incentives as a key factor in sustainable EMR implementations. The sections of our conceptual framework that best enabled us to capture information incentives were the 12 survey questions about information quality, EMR adoption questions in the interview guide and a subset of 26 items from our transcription coding scheme that were linked to physicians quotations about knowing more about the patient when using the EMR than when using paper.

Impact of a critical care clinical information system on interruption rates during intensive care nurse and physician documentation tasks.

Computerized documentation methods in Intensive Care Units (ICUs) may assist Health Care Providers (HCP) with their documentation workload, but evaluating impacts remains problematic. A Critical Care clinical Information System (CCIS) is an electronic charting tool designed for ICUs that may fit seamlessly into HCP work. Observers followed ICU nurses and physicians in two ICUs in Edmonton, Canada, in which a CCIS had recently been introduced. Observers recorded amounts of time HCPs spent on documentation related tasks, interruptions encountered by HCPs, and contextual information in field notes. Interruption rates varied depending on the charting medium used, with physicians being interrupted less frequently when performing documentation tasks using the CCIS, than when performing documentation tasks using other methods. In contrast, nurses were interrupted more frequently when charting using the CCIS than when using other methods. Interruption rates coupled with qualitative observations suggest that physicians utilize strategies to avoid interruptions if interfaces for entering textual notes are not well adapted to interruption-rich environments such as ICUs. Potential improvements are discussed such that systems like the CCIS may better integrate into ICU work.

Continuity of care for children with complex chronic health conditions: parents' perspectives.

BACKGROUND: Continuity of care has been explored largely from academic and service provider perspectives, and in relation to adult patient/client groups. We interviewed parents of children with complex chronic health conditions to examine how their experiences and perceptions of continuity of care fit with these perspectives; and to identify the salient 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 relevant to 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. Verbatim transcripts were analyzed thematically using a framework approach to impose structure regarding parents' perspectives on continuity of care. RESULTS: Existing academic concepts of relational, informational and management continuity were all discernable in parents' narratives. A thorough knowledge of the child on the part of service providers emerged as extremely important to parents; such knowledge was underpinned by continuity of personal relationships, principally, and also by written information. For this population, notions of continuity extend to the full range of service providers these children and families need to achieve optimal health status, and are not limited to physicians and nurses. Communication among providers was seen as integral to perceived continuity. Compartmentalization of services and information led to parents assuming a necessary, though at times, uncomfortable, coordinating role. Geographic factors, institutional structures and practices, 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's health care. They are relevant to contemporary initiatives to improve continuity of services to children with special health care needs, demonstrate the need for parental support of their important role in maintaining continuity, and suggest avenues for further research.