Cliff or bridge: breaking up with the paediatric healthcare system.

Transition from paediatric to adult healthcare is a normal part of the care trajectory, yet the process often leaves much to be desired. In this commentary, I share my family's journey of this care transition, particularly the handover aspect, by providing examples of different ways that relationships were ended by paediatric healthcare professionals. The ending of these relationships often felt like 'breaking up'. I also share an example of a supported handover, which bridged the transition from paediatric to adult care. To improve transitions, we need genuine acknowledgement of the paediatric medical trauma stress (PMTS) experienced by families such as mine following years of interactions in the healthcare system. Along with following transition checklists, patients and families need authentic and meaningful closure to longitudinal relationships and trauma-informed care practices as we move forward into the adult care system.

Caregiver Involvement and Concerns with Care of Residents of Assisted Living before and during the COVID-19 Pandemic.

INTRODUCTION: Family/friend caregivers play an essential role in promoting the physical and mental health of older adults in need of care - especially during the COVID-19 pandemic and especially in assisted living (AL) homes, where resident care needs are similarly complex as in long-term care homes but fewer staffing resources and services are available. However, little research is available on caregiver involvement and concerns with care of AL residents prior to and during waves 1 and 2 of the COVID-19 pandemic. This study addressed this important knowledge gap. METHODS: This prospective cohort study used baseline and follow-up online surveys with primary caregivers to AL residents in Western Canada who were 65 years or older and had lived in the AL home for at least 3 months before Mar 1, 2020. Surveys assessed the following outcomes in the 3 months prior to and during waves 1 and 2 of the pandemic: sociodemographics, 5 ways of visiting or communicating with residents, involvement in 16 care tasks, concerns with 9 resident physical/mental health conditions, perceived lack of resident access to 7 care services, and whether caregivers felt well informed and involved with resident care. RESULTS: Based on 386 caregiver responses, in-person visits dropped significantly in wave 1 of the pandemic and so did caregiver involvement in nearly all care tasks. While these rates increased in wave 2, most did not return to pre-pandemic levels. Correspondingly, caregiver concerns (already high before the pandemic) substantially increased in wave 1 and stayed high in wave 2. These were particularly elevated among caregivers who did not feel well informed/involved with resident care. CONCLUSIONS: Restricted in-person visiting disrupted resident care and was associated with worse perceptions of resident health and well-being. Continued caregiver involvement in resident care and communication with caregivers even during lockdowns is key to mitigating these issues.

Population level administrative data evidence of visits to the emergency department by youth with intellectual/developmental disabilities in BC, Canada.

INTRODUCTION: The literature indicates that youth with intellectual/developmental disabilities (IDD) have poor health and that access to health services decreases as they transition from pediatric to adult services. At the same time their use of emergency department services increases. The objective of this study was to compare use of emergency department services by youth with IDD to youth without IDD, with particular emphasis on the transition period from pediatric to adult health care services. METHODS: This research used a population level administrative health data base for the province of British Columbia Canada for 2010-2019 to examine the use of emergency departments by youth with IDD (N = 20,591) compared to a population group of youth without IDD (N = 1,293,791). Using the ten years of data, odds ratios for visits to the emergency department were calculated adjusting for sex, income and geographical area within the Province. In addition, difference-in-differences analyses were calculated for age matched subsets of the two cohorts. RESULTS: Over the ten year period, 40.60% of youth with IDD visited an emergency department at least once, compared to 29.10% of youth without IDD. Youth with IDD had an odds ratio of visiting an emergency department 1.697 (1.649, 1.747) times that of youth without IDD. However, when odds were adjusted for a diagnosis of either psychotic illness or anxiety/depression, the odds for youth with IDD visiting emergency compared to youth without IDD were reduced to 1.063 (1.031, 1.096). Use of emergency services increased as youth aged. Type of IDD also affected use of emergency services. Youth with Fetal Alcohol Syndrome had the greatest odds of using emergency services compared to youth with other types of IDD. DISCUSSION: The findings from this study indicate that youth with IDD have higher odds of using emergency services than youth without IDD although these increased odds appear to be largely driven by mental illness. In addition, use of emergency services increases as the youth age and transition from pediatric to adult health services. Better treatment of mental health issues within this population may reduce their use of emergency services.

The meaning of preparedness for informal caregivers of older adults: A concept analysis.

AIM: To examine the concept of preparedness over time in research with informal caregivers of older adults. DESIGN: Concept analysis. METHODS: Rodgers' evolutionary method of concept analysis was used to guide this theoretical paper due to the dynamic nature of preparedness, which is influenced by both context and time. Using Rodgers' inductive approach, concept elements were derived from a content analysis of included studies. In the final step, to generate hypotheses and implications regarding the concept, the conceptual structure of preparedness of informal caregivers of older adults was connected to a theoretical problem in the nursing discipline using the Caregiving Stress Process Framework. DATA SOURCES: Four databases (EBSCO CINAHL, Ovid MEDLINE, Ovid PsycINFO and Scopus) were searched in November 2022 and updated in September 2023. No date limits were set for searching, as the intent was to analyse possible variations of the concept over time. RESULTS: The attributes of preparedness include self-confidence, having knowledge, skills and abilities to perform daily tasks, handling emotions and developed over time. These attributes can be compared with the stressors outlined in the Caregiving Stress Process Framework (i.e., the moment the caregiver identifies some 'stressor'; something that prevents them from feeling confident in their preparedness). CONCLUSION: The concept of preparedness of informal caregivers of older adults is defined as caregiver's self-confidence about their current competence related to the knowledge, skills and abilities to perform daily tasks, and to handle emotions over time. To link the concept to a theoretical perspective, we propose adaptations to a well-known theory, the Caregiving Stress Process Framework. Future research on caregiving preparedness needs to avoid circular definitions and work with the attributes of preparedness to support caregivers. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: This paper contributes to the development of interventions that focus on the health and preparedness of informal caregivers of older adults. Clarifying the concept of preparedness helps nurses to support caregivers since it is then known which aspects are included in the preparedness of caregivers (e.g., daily tasks and handling emotions). A more fulsome understanding of preparedness supports us to see beyond stressors of caregiving. IMPACT: This study addresses informal caregivers of older adults' preparedness to provide care. We synthesized existing definitions that have been used in research with this population to propose a robust conceptualization of the concept of preparedness, which contributes to better understanding of how preparedness can be supported. REPORTING METHOD: We were unable to locate a reporting method related to this kind of work (concept analysis). PATIENT OR PUBLIC CONTRIBUTION: Not applicable as no new data generated.

The Use of Medically Required Dental Services by Youth with Intellectual/Developmental Disabilities in British Columbia, Canada.

INTRODUCTION: The literature indicates that youth with intellectual/developmental disabilities (IDD), such as Down syndrome or autism, have poor oral health. A number of factors influence their oral health, including the use of medically required dental treatments. METHODS: This paper describes the first use of population-level administrative health data to examine the use of medically required dental services by youth with IDD compared with youth without IDD in Canada. RESULTS: Youth with IDD had 4-9 times the odds of a medically required dental treatment compared with youth without IDD. Odds varied with age and type of IDD. CONCLUSIONS: Youth with IDD used medically required dental services to a greater extent than youth without IDD. Use of medically required dental treatments by youth with IDD declined with age; this may indicate greater difficulty accessing services when youth transition from pediatric to adult services. These findings provide baseline information on the use of medically required dental treatments and can contribute to future assessments of dental services for youth with IDD.

Disruptions in Relational Continuity: The Impact of Pandemic Public Health Measures on Families in Long-Term Care.

Although the value of family caregivers' involvement with relatives in long-term care (LTC) is well recognized, tensions remain regarding their role. Such tensions were exacerbated during the COVID-19 pandemic as strict public health measures restricted family access to LTC homes. Using interpretive description, we examined the impact of visitation restrictions on family caregivers' experiences caring for a relative in LTC between March 2020 and June 2021. In-depth interviews were conducted with 14 family caregivers (five spouses and nine adult daughters) and two key themes were identified. The first theme, "seeking to maintain relational continuity," illustrates how caregivers sought to sustain connections with residents prior to and during the pandemic. The second theme, "disrupted relational continuity," highlights the impact of severed relational connections on caregivers' sense of self and ongoing feelings of loss and anger. Findings call for a trauma-informed approach that recognizes the pervasiveness of trauma for family caregivers and the avoidance of re-traumatization.

Caregivers' Concerns About Assisted Living Residents' Mental Health During the COVID-19 Pandemic: A Cross-Sectional Survey Study.

Family or friend caregivers' concerns about assisted living (AL) residents' mental health are reflective of poor resident and caregiver mental health. COVID-19-related visiting restrictions increased caregiver concerns, but research on these issues in AL is limited. Using web-based surveys with 673 caregivers of AL residents in Western Canada, we assessed the prevalence and correlates of moderate to severe caregiver concerns about residents' depressed mood, loneliness, and anxiety in the 3 months before and after the start of the COVID-19 pandemic. Caregiver concerns doubled after the start of the pandemic (resident depressed mood: 23%-50%, loneliness: 29%-62%, anxiety: 24%-47%). Generalized linear mixed models identified various modifiable risk factors for caregiver concerns (e.g., caregivers' perception that residents lacked access to counseling services or not feeling well informed about and involved in resident care). These modifiable factors can be targeted in efforts to prevent or mitigate caregiver concerns and resident mental health issues.

Family physicians' and trainees' experiences regarding cancer screening with patients with intellectual disability: An interpretive description study.

People with intellectual disability receive breast, cervical, and colorectal cancer screening at lower rates relative to the general population, although the reasons for this disparity are largely unknown. Research, both with the general population and specific to people with intellectual disability, has revealed that a family physician's recommendation for cancer screening or continuity of primary care may increase screening rates. We interviewed family physicians and family medicine trainees regarding their experiences recommending cancer screening to patients with intellectual disability. We concluded that the decision to recommend cancer screening is complex, and includes physicians weighing their clinical judgement as to the best provision of care for patients with a patient's eligibility for screening, while continuing to respect patients' autonomy. This patient-physician interaction occurs within the larger medical environment. Further research with experienced family physicians is warranted to better understand this complex phenomenon.

Prevalence and correlates of anxiety and depression in caregivers to assisted living residents during COVID-19: a cross-sectional study.

BACKGROUND: Family and friend caregivers play significant roles in advocating for and ensuring quality health and social care of residents in Assisted Living (AL) homes. However, little is known about how the COVID-19 pandemic and related visitor restrictions affected their health and mental well-being. We examined the prevalence and correlates of anxiety and depressive symptoms among caregivers of AL residents during the initial wave of COVID-19 in two Canadian provinces. METHODS: A cross-sectional web-based survey was conducted among family/friend caregivers of AL residents in Alberta and British Columbia (Oct 28, 2020-Mar 31, 2021) to collect data on their sociodemographic, health and caregiving characteristics, as well as concerns about residents' health and social care before and during the first wave of the pandemic. A clinically significant anxiety disorder and depressive symptoms were assessed with the GAD-7 and CES-D10 instruments, respectively. Separate multivariable (modified) Poisson regression models identified caregiver correlates of each mental health condition. RESULTS: Among the 673 caregivers completing the survey (81% for Alberta residents), most were women (77%), white (90%) and aged ≥ 55 years (81%). Clinically significant anxiety and depression were present in 28.6% and 38.8% of caregivers respectively. Both personal stressors (comorbidity level, income reduction, low social support) and caregiving stressors exacerbated by the pandemic were independently associated with caregiver anxiety and depression. The latter included increased concern about the care recipients' depression (adjusted risk ratio [adjRR] = 1.84, 95% confidence interval [CI] 1.19-2.85 for caregiver anxiety and adjRR = 1.75, 95% CI 1.26-2.44 for caregiver depressive symptoms) and reported intention to withdraw the resident from AL because of COVID-19 (adjRR = 1.24, 95%CI 0.95-1.63 for caregiver anxiety and adjRR = 1.37, 95%CI 1.13-1.67 for caregiver depressive symptoms). CONCLUSIONS: Caregivers of residents in AL homes reported significant personal and caregiving-related stressors during the initial wave of COVID-19 that were independently associated with an increased likelihood of experiencing clinically significant anxiety and depressive symptoms. Healthcare providers and AL staff should be aware of the prevalence and varied correlates of caregivers' mental health during public health crises so that appropriate screening and support may identified and implemented.

The unintended consequences of COVID-19 public health measures on health care for children with medical complexity.

AIM: The aim of this work is to explore the unintended consequences of pandemic public health measures on health care service usage by children with medical complexity. BACKGROUND: Medical complexity is characterized by the presence of complex, chronic conditions requiring specialized care, substantial health needs, functional dependence and/or limitations, and frequent health care usage. Children with medical complexity are among the highest users of paediatric health care services. METHODS: A web-based, cross-sectional survey was conducted in British Columbia, Canada, between August and September 2020. Inclusion criteria were (a) parent/guardian of at least one child (age 0 to 18 years, inclusive) with medical complexity and (b) residence in British Columbia. A convenience sample of 156 parents completed the survey. Data were analysed using a series of descriptive analyses (frequencies, cross-tabulations) and inferential analyses (binary logistic regressions). RESULTS: Respondents provided information for 188 children with medical complexity. Access to allied health therapies (physio, occupational, and speech and language) and medical specialists drastically declined in the initial months of the pandemic, with a shift from in-person to virtual platforms for these aspects of care. Regression modelling indicated that age and family structure influenced decisions to use in-patient hospital services. CONCLUSIONS: Public health measures implemented in the initial months of the pandemic decreased access to health care services for children with medical complexity. The long-term ramifications of these measures are unknown. Family structure was found to influence decisions to avoid accessing Emergency Department care. Given the volume of services used by these children, paediatric hospital leaders need to take their unique needs into consideration in disaster planning to ensure minimal disruptions in care.

Exploring the Impacts of COVID-19 Public Health Measures on Community-Dwelling People Living With Dementia and Their Family Caregivers: A Longitudinal, Qualitative Study.

Since the onset of the COVID-19 pandemic, community-dwelling people living with dementia and their family caregivers have experienced many challenges. The unanticipated consequences of public health measures have impacted these families in a myriad of ways. In this interpretive policy analysis, which used a longitudinal, qualitative methodology, we purposively recruited 12 families in British Columbia, Canada, to explore the impacts of pandemic public health measures over time. Semi-structured interviews were conducted every 3 months and participants completed diary entries. Twenty-eight interviews and 34 diary entries were thematically analyzed. The findings explore ways that families adopted and adapted to public health measures, loss of supports, both formal and informal, and the subsequent consequences for their mental and physical well-being. Within the ongoing context of the pandemic, as well as potential future wide-spread emergencies, it is imperative that programs and supports are restarted and maintained to avoid further harm to these families.

Growth mixture models: a case example of the longitudinal analysis of patient-reported outcomes data captured by a clinical registry.

BACKGROUND: An assumption in many analyses of longitudinal patient-reported outcome (PRO) data is that there is a single population following a single health trajectory. One approach that may help researchers move beyond this traditional assumption, with its inherent limitations, is growth mixture modelling (GMM), which can identify and assess multiple unobserved trajectories of patients' health outcomes. We describe the process that was undertaken for a GMM analysis of longitudinal PRO data captured by a clinical registry for outpatients with atrial fibrillation (AF). METHODS: This expository paper describes the modelling approach and some methodological issues that require particular attention, including (a) determining the metric of time, (b) specifying the GMMs, and (c) including predictors of membership in the identified latent classes (groups or subtypes of patients with distinct trajectories). An example is provided of a longitudinal analysis of PRO data (patients' responses to the Atrial Fibrillation Effect on QualiTy-of-Life (AFEQT) Questionnaire) collected between 2008 and 2016 for a population-based cardiac registry and deterministically linked with administrative health data. RESULTS: In determining the metric of time, multiple processes were required to ensure that "time" accounted for both the frequency and timing of the measurement occurrences in light of the variability in both the number of measures taken and the intervals between those measures. In specifying the GMM, convergence issues, a common problem that results in unreliable model estimates, required constrained parameter exploration techniques. For the identification of predictors of the latent classes, the 3-step (stepwise) approach was selected such that the addition of predictor variables did not change class membership itself. CONCLUSIONS: GMM can be a valuable tool for classifying multiple unique PRO trajectories that have previously been unobserved in real-world applications; however, their use requires substantial transparency regarding the processes underlying model building as they can directly affect the results and therefore their interpretation.

Patient-reported outcomes and the identification of subgroups of atrial fibrillation patients: a retrospective cohort study of linked clinical registry and administrative data.

PURPOSE: Previous research about the health and quality of life of people with atrial fibrillation has typically identified a single health trajectory. Our study aimed to examine variability in health trajectories and patient characteristics associated with such variability. METHODS: We conducted a retrospective analysis of data collected between 2008 and 2016 for a cardiac registry in British Columbia (Canada) linked with administrative health data. The Atrial Fibrillation Effect on Quality of Life Questionnaire was used to measure health status at up to 10 clinic visits. Growth mixture models were used and a three-step multinomial logistic regression was conducted to identify predictors of subgroups with different trajectories. RESULTS: The patients (N = 7439) were primarily men (61.1%) over 60 years of age (72.9%). Three subgroups of health status trajectories were identified: "poor but improving", "good and stable", and "excellent and stable" health. Compared with the other two groups, patients in the "poor but improving group" were more likely to (1) be less than 60 years of age; (2) be women; (3) have greater risk of stroke; (4) have had ablation therapy within 6 months to 1 year or more than 2 years after their initial consultation; and (5) have had anticoagulation therapy within 6 months. CONCLUSION: Using growth mixture models, we found that not all health trajectories are the same. These models can help to understand variability in trajectories with different patient characteristics that could inform tailored interventions and patient education strategies.

Community lives of adolescents across multiple special needs: Discrimination, community belonging, trusted people, leisure activities, and friends.

We sought to gain insights into the community lives, experiences, and activities of adolescents across multiple categories of special needs. Specifically, we: explored the particular aspects of their lives adolescents felt elicited discrimination; determined whether adolescents feel a sense of community belongingness, as well as the categories of people whom adolescents approach when help is needed; and detailed the leisure activities respondents undertake and with which frequency, in addition to the quantity of friendships they have. We performed assorted descriptive analyses of the McCreary Centre Society's 2013 British Columbia Adolescent Health Survey (BCAHS) database. We found tremendous variation in the survey responses of adolescents, both within and between special needs categories, highlighting the importance of such exploratory analyses. This paper provides inductive population-based evidence to inform theories about the community lives of adolescents with special needs, as well as to guide programs and policies targeting such youth.

Primary care providers' attitudes towards individuals with intellectual disability: Associations with experience and demographics.

Primary care providers are the main point of contact with the healthcare system for individuals with intellectual disability, and they may have pre-existing attitudes towards this group that impacts care. We examined whether participants' gender, age, professional status and experience with individuals with intellectual disability were associated with attitudes by surveying 95 family physicians, family medicine trainees and advanced practice nursing students across a Canadian province. Younger participants were more likely to feel that those with intellectual disability are similar to themselves and that individuals with intellectual disability should be empowered to take control of their lives. Older participants were more likely to believe that individuals with intellectual disability are vulnerable. These findings suggest there may be a generational difference in attitudes, and educational interventions may be needed to ameliorate attitudes among older primary care providers to reduce the impact of pre-existing attitudes on the provision of care.

Exploring New Use of Cannabis among Older Adults.

Objectives: In Canada, cannabis prohibition ended in October 2018. Older adults are the fastest growing group of cannabis users and are out-pacing other groups as new users. Clinical evidence indicates that cannabis may be helpful for select medicinal purposes in this population. Yet there is limited research about older adults experiences of starting to use cannabis in later life. The purpose of this study was to begin to address this gap. Methods: This study employed qualitative description. A convenience sample of Canadian community-dwelling older adults who were new users of cannabis were recruited. Data were collected using semi-structured interviews. Data analysis was inductive and thematic. Results: Twelve older adults between the ages of 71 and 85 participated. All of the participants used cannabis for medicinal reasons, however, only one had a prescription. The main reasons for using were: pain management, alternative to prescription or over-the-counter medication, and sleep aide. Most participants obtained cannabis from non-licensed stores. Eleven discussed cannabis use with their family physicians, however, none received prescriptions from them. The main sources of information were friends, cannabis store staff, and the media. Conclusions: Older adults who begin using cannabis are likely using for what they perceive to be medicinal purposes for a range of issues. However, they receive minimal guidance from their family physicians and instead obtain information from non-clinician sources. Clinical implications: Cannabis screening should be included in geriatric assessments and medicine reconciliation. Continuing education for clinicians needs to address knowledge gaps about cannabis use among older adults.

Practice-based nursing research: Evaluation of clinical and professional impacts from a research training programme.

AIMS AND OBJECTIVES: To determine the clinical and professional impacts of nurses' and other clinicians' involvement in a research training programme. BACKGROUND: Evidence-based practice (EBP) can be supported by nurses' involvement in research. Registered nurses report common barriers to EBP and research, but training programmes have been shown to overcome some of those barriers and lead to successful research engagement and EBP enhancement. DESIGN: This mixed-methods evaluation study used a survey and interviews to explore the clinical and professional impacts of research training programme participation on nurses' and other clinicians' clinical practice, appreciation for EBP, interest in advanced education, future research involvement and dissemination activities. METHODS: The study adhered to the SQUIRE guidelines for quality improvement studies as part of the EQUATOR network (Enhancing the Quality and Transparency of Health Research). Survey invitations were sent to 126 clinicians who had participated in a research training programme. All were invited to complete the questionnaire and participate in an interview. RESULTS: Survey results and interview responses showed a positive impact. Participants reported examples of sustained practice changes, enhanced EBP, heightened interest in graduate studies, strong interest in future research engagement and a large number of dissemination activities, including publications and conference presentations. CONCLUSIONS: The evaluation found that participation in a research training programme can have a positive clinical and professional impact on participants, including enhancing their appreciation for EBP and research, their interest in advanced education and meaningful dissemination of findings to improve patient care. RELEVANCE TO CLINICAL PRACTICE: As healthcare leaders seek to increase EBP to improve patient care, successful models for nurses' engagement in research and EBP are critically important. This research training programme is one promising model for supporting nurses' and other clinicians' engagement in EBP and research.

Factors affecting job satisfaction in long-term care unit managers, directors of care and facility administrators: A secondary analysis.

AIM: To identify demographic-, individual- and organisational-level predictors of job satisfaction among managers in residential long-term care (LTC) facilities. BACKGROUND: Job satisfaction predicts turnover among managers in LTC settings. However, factors affecting job satisfaction among LTC facility managers remain poorly understood. METHODS: A secondary analysis of data from Phase 2 of the Translating Research in Elder Care programme including 168 managers (unit managers, directors of care and facility administrators) from 76 residential LTC homes in three Canadian provinces. Michigan Organizational Assessment Questionnaire Job Satisfaction Subscale was used to measure job satisfaction. Predictors of job satisfaction determined using general estimating equations. RESULTS: The efficacy subscale of burnout was positively predicted job satisfaction at the individual level (B = .104, p = .046). At the organisational level, social capital (B = .224, p = .018), adequate orientation (B = .166, p = .015) and leadership (B = .155, p = .018) were associated with higher job satisfaction. CONCLUSIONS: These data suggest that improving LTC managers' self-perceived efficacy, leadership, social capital and adequate orientation may enhance their job satisfaction. IMPLICATIONS FOR NURSING MANAGEMENT: Predictors of managers' job satisfaction are modifiable and therefore may be amenable to intervention.

Student Nurses' Perceptions About Older People.

Educating nursing students about the ageing population is situated within negative societal, heath care and nursing perceptions. A cross-sectional design using Burbank's perceptions towards older people scale was used to survey students in a pre-licensure nursing program in western Canada. Findings revealed that students' perceptions about older people were lower in the third year of the nursing program and after four clinical experiences. We suggest that students' first experiences in long-term care settings, in which they learn to provide basic care to older people, be balanced with experiences of older people in a variety of settings. Such experiences would allow students to develop the knowledge and skill needed to work with an ageing population with complex healthcare needs. More research is needed to better understand students' experiences and perceptions about where in the program more learning strategies about how to best work with older people would be helpful.

Alone in a Crowd? Parents of Children with Rare Diseases' Experiences of Navigating the Healthcare System.

A disorder is considered a rare disease if it affects 1 in 2000, hence, while independently unique, collectively, these conditions are quite common. Many rare diseases are diagnosed during childhood, and therefore parents become primary caregivers in addition to their parental role. Despite the prevalence of rare diseases among children, there has been little research focused on parents' experiences of navigating the healthcare system, a gap we begin to address in this study. Guided by an interpretive description methodology, participants were recruited through online listservs and posting flyers at a pediatric hospital in Western Canada. Sixteen parents (15 mothers and 1 father) participated in in-depth, semi-structured interviews between April 2013 and March 2014. Data were analyzed inductively, generating the main study themes. Findings illuminated the challenges parents' experienced on their child's diagnostic journey-from seeking, to receiving, to adjusting to the rare disease diagnosis. Following diagnosis, gaps, and barriers to services resulted in parents pursuing services that could support their child's unique care needs, which often resulted in out-of-pocket payments and changes to employment. Parents found peer support, both online and in person, to be an effective resource. This study illustrates the common challenges experienced by parents of children with rare diseases as they navigate the healthcare system. Parents' role as "expert caregiver" was rarely acknowledged by healthcare providers, pointing to the need to foster more egalitarian relationships. As well, parents were burdened with the additional role of care coordinator, a role that could be filled formally by a healthcare provider. Lastly, peer support was a key resource in terms of information and emotional support for parents who often begin their journey feeling isolated and alone. Policies and programs are needed that validate the invisible care work of parents and ensure adequate formal supports are in place to mitigate potential sources of inequity for these families. Furthermore, genetic counselors can play a key role in ensuring parents' informational needs are addressed at the time of diagnosis and in connecting families who share common experiences regardless of the rare disease diagnosis.