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.

Prescriptions for Antipsychotics: Youth with Intellectual/Developmental Disabilities Compared to Youth without Intellectual/Developmental Disabilities.

PURPOSE: The purpose of this study was to compare antipsychotic use by youth with intellectual/developmental disabilities to youth without IDD as they transitioned from pediatric to adult health care services. In addition, antipsychotic use was compared between youth with different types of IDD (autism, Fetal Alcohol Syndrome, Down syndrome and 'other'). METHODS: Population level administrative health data was used to compare the dispensing of antipsychotics for youth aged 15 to 24 years with and without IDD, between 2010 and 2019. Because antipsychotics are associated with metabolic syndrome and type 2 diabetes, we also examined the dispensing data for metformin. In addition, we examined dispensed antipsychotics between different types of IDD. For both dispensing of antipsychotics and metformin, we used multi-variable logistic regression to derive adjusted odds ratios. RESULTS: There were 20,591 youth with IDD and 1,293,791 youth without IDD. Youth with IDD had significantly higher odds of being dispensed an antipsychotic (7.13 (6.82, 7.44)), even when a diagnosis of a psychotic illness was included in the regression. Higher odds were found in all age groups. Youth with IDD also had significantly higher odds of being dispensed metformin (3.739 (3.323, 4.208)) compared to youth without IDD. Youth with autism, FAS and 'other' types of IDD diagnoses all had higher odds of being dispensed an antipsychotic compared to youth with Down syndrome. CONCLUSION: Compared to youth without IDD, youth with IDD were more frequently dispensed antipsychotics and metformin. These findings have important implications for the health of youth with IDD.

Population Level Mental Health Diagnoses for Youth with Intellectual/Developmental Disabilities Compared to Youth without Intellectual/Developmental Disabilities.

There is evidence in the literature that youth with intellectual/developmental disabilities (IDD) experience mental health issues to a greater extent compared to youth without IDD. In addition, transition from pediatric to adult services may be a period of increased anxiety and mental health problems for these youth. This study used a retrospective cohort design using population level administrative health data to compare mental health diagnoses between youth with IDD and youth without IDD; particularly examining the period when youth transition from pediatric health services to adult health services. In addition, this study compared the mental health of youth with various types of IDD (Down syndrome, autism, fetal alcohol syndrome and other rarer diagnoses). Results showed that at the population level youth with IDD have greater odds of anxiety/depression or psychotic illness than youth without IDD. Adjusted odds of anxiety/depression or psychotic illness also varied with age, income level, sex, and type of IDD. Youth with fetal alcohol syndrome had the greatest odds of both anxiety/depression and a psychotic illness. Odds of anxiety/depression increased from age 15-19 years old. Odds of a psychotic illness increased from age 15 to age 24 years old.

Perspectives on the representation of frailty in the electronic frailty index.

BACKGROUND: Frailty is a state of increased vulnerability from physical, social, and cognitive factors resulting in greater risk of negative health-related outcomes and increased healthcare expenditure. A 36-factor electronic frailty index (eFI) developed in the United Kingdom calculates frailty scores using electronic medical record data. There is currently no standardization of frailty screening in Canadian primary care. In order to implement the eFI in a Canadian context, adaptation of the tool is necessary because frailty is represented by different clinical terminologies in the UK and Canada. In considering the promise of implementing an eFI in British Columbia, Canada, we first looked at the content validation of the 36-factor eFI. Our research question was: Does the eFI represent frailty from the perspectives of primary care clinicians and older adults in British Columbia? METHODS: A modified Delphi using three rounds of questionnaires with a panel of 23 experts (five family physicians, five nurse practitioners, five nurses, four allied health professionals, four older adults) reviewed and provided feedback on the 36-factor eFI. These professional groups were chosen because they closely work as interprofessional teams within primary care settings with older adults. Older adults provide real life context and experiences. Questionnaires involved rating the importance of each frailty factor on a 0-10 scale and providing rationale for ratings. Panelists were also given the opportunity to suggest additional factors that ought to be included in the screening tool. Suggested factors were similarly rated in two Delphi rounds. RESULTS: Thirty-three of the 36 eFI factors achieved consensus (> 80% of panelists provided a rating of ≥ 8). Factors that did not achieve consensus were hypertension, thyroid disorder and peptic ulcer. These factors were perceived as easily treatable or manageable and/or not considered reflective of frailty on their own. Additional factors suggested by panelists that achieved consensus included: cancer, challenges to healthcare access, chronic pain, communication challenges, fecal incontinence, food insecurity, liver failure/cirrhosis, mental health challenges, medication noncompliance, poverty/financial difficulties, race/ethnic disparity, sedentary/low activity levels, and substance use/misuse. There was a 100% retention rate in each of the three Delphi rounds. CONCLUSIONS AND NEXT STEPS: Three key findings emerged from this study: the conceptualization of frailty varied across participants, identification of frailty in community/primary care remains challenging, and social determinants of health affect clinicians' assessments and perceptions of frailty status. This study will inform the next phase of a broader mixed-method sequential study to build a frailty screening tool that could ultimately become a standard of practice for frailty screening in Canadian primary care. Early detection of frailty can help tailor decision making, frame discussions about goals of care, prevent advancement on the frailty trajectory, and ultimately decrease health expenditures, leading to improved patient and system level outcomes.

Filling In: Family Member Support for Nonrelative Residents in Long-Term Care Homes.

BACKGROUND AND OBJECTIVES: Past research about family involvement in long-term care (LTC) homes mainly focuses on family members' involvement with their own relative, interactions with staff, and collective activities such as Family Councils. Our research provides novel insights into family member's involvement in the care of residents who are not their relatives, an area that has not previously been explored. RESEARCH DESIGN AND METHODS: This critical ethnographic study examined ways that family members negotiate and navigate their roles within LTC homes. Data collection and analysis took place at 3 LTC homes in British Columbia, Canada, between 2014 and 2018. Data were collected through participant observation and semistructured interviews. Eleven family member participants shared experiences of caring for residents who were not their relatives. RESULTS: The umbrella theme was "filling in," which takes place in a care environment that is understaffed and underresourced. The subthemes reflect the various ways that families are "filling in": responding to resident's needs, supporting staff to respond to resident needs, and filling in for residents' families. DISCUSSION AND IMPLICATIONS: Caring for residents who are not their relatives is facet of family involvement in LTC homes that has not been previously explored. Many family members have expertise in providing person-centered care and they extend this expertise to residents who are not their relatives. Policies and legislation are needed to formalize family involvement in caring for nonrelative residents as it is a component of quality of care for all residents.

"Can you hear me OK?": Caregivers of Children With Medical Complexity and Their Perspectives of Virtual Care During COVID-19.

INTRODUCTION: The rapid and widespread shift to virtual care during COVID-19 created new opportunities and unique challenges for families of children with medical complexity (CMC). However, few studies have examined perceptions of virtual care during the pandemic in this population. METHOD: To address this gap, the current study used a qualitative approach and semistructured interviews via Zoom to explore parent perspectives of virtual care. Purposive sampling was used to recruit 30 parents residing with their CMC (aged 0-18 years) in British Columbia, Canada. RESULTS: The findings identified from the data included (1) advantages and opportunities, (2) concerns and challenges, and (3) parent choice and preference. DISCUSSION: Our findings indicate the need for healthcare professionals to receive training to use virtual care in their practice effectively. In addition, policies about standards for virtual care and ensuring families have access to the necessary technology will help reduce barriers and improve equity and inclusion for this population.

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.

"A very different place from when the pandemic started": Lessons learned for improving systems of care for families of children with medical complexity.

Coronavirus disease 2019 (COVID-19) created unprecedented challenges for everyone, but especially families of children with medical complexity (MC) who rely on a comprehensive range of health and social services in their daily lives. Yet despite this, there are limited studies exploring caregiver perspectives regarding access to health and social services during the pandemic. To address this gap, we aimed to explore how health and social services can better meet the needs of children with MC and their families. Sixteen parents residing with their children with MC (from birth to 18 years) in British Columbia, Canada participated in semi-structured interviews between July 2021 and April 2022. Findings revealed two different areas to improve services for families of children with MC, those relating to technology and family-centered care. Parents prioritized expanding the use of digital communication tools to support service navigation and scheduling. Virtual platforms were viewed as being valuable for building connections with other families and their community. In terms of family-centered care, parents emphasized the importance of policies recognizing the physical, emotional, and financial needs of the family. Findings have important implications for improving services to enhance the well-being and quality of life of children with MC and their families.

At the Epicentre of the COVID-19 Pandemic in Canada: Experiences and Recommendations of Family Care Partners of an Older Person Living in a Long-Term Care Home.

The roles of family care partners of older persons living in long-term care homes (LTCH) were severely disrupted during the coronavirus disease (COVID-19) pandemic. Our aim was to describe their experiences and to solicit their recommendations for supportive actions. We conducted a critical ethnography with 24 care partners who cared or had cared for an older person living in an LTCH in Québec during the COVID-19 pandemic. We collected data during interviews and used Spradley's method to analyse them. Care partners experienced a forced separation from the older persons they cared for, which resulted in significant distress. Care, including post-mortem care, was considered inadequate and sometimes even inhumane. Communication was inconsistent, and this variability was also noted in visitation rules. Care partners perceived LTCHs as a neglected community. Supportive actions were recommended. The results illustrated the essential contribution of care partners, and the supportive actions they recommended must be a catalyst for change toward more humane care in LTCH settings.

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.

Population-level use of gynecological health services by female youth with intellectual/developmental disabilities in British Columbia Canada.

BACKGROUND: There is evidence that female youth with intellectual/developmental disabilities (IDD) experience poorer gynecological care compared to female youth without disabilities. OBJECTIVE: The objective of this study was to obtain baseline data on visits to a health care provider for a gynecological issue for females with IDD and compare that information to the experiences of female youth without IDD. METHODS: This study is a retrospective cohort study using population-level administrative health data from 2010 to 2019 for females aged 15-24 years, with and without IDD. RESULTS: 6452 female youth with IDD and 637,627 female youth without IDD were identified in the data. Over the ten-year period, 53.77% of youth with IDD and 53.68% of youth without IDD had a visit to a physician for a gynecological issue. However, as females with IDD aged, the number of people seeing a physician for a gynecological issue decreased. In the group aged 20-24 years, 15.25% of females with IDD and 24.47% of females without IDD (p < 0.0001) had a Pap test done at any time; 25.94% of females with IDD had a visit for contraception management and 28.38% of females (p < 0.0001) without IDD had a visit for contraception management. Gynecological care also varied by type of IDD. CONCLUSIONS: Females with IDD had a similar number of visits for a gynecological issue as female youth without IDD. However, the reasons for visits and the age at which visits occurred differed between youth with and without IDD. As females with IDD transition into adulthood, gynecological care must be maintained and improved.

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.

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.

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.

Older adults experiences of using recreational cannabis for medicinal purposes following legalization.

BACKGROUND AND OBJECTIVES: Legalization of recreational, or non-medical, cannabis in Canada in 2018 was followed by significant increase in use among older adults. Non-medical cannabis is often used medicinally in this population for issues such as pain, insomnia, and appetite stimulation. The purpose of this study was to explore new cannabis use among older adults within an evolving socio-legal context. RESEARCH DESIGN AND METHODS: Normalization theory provided the theoretical foundation and qualitative description was the guiding methodology. A convenience sample of twelve participants (ten women, two men) aged 71 to 85 years old was recruited. Data were collected using semi-structured interviews and analyzed thematically. RESULTS: Findings illustrate factors that influenced participants' beliefs and contributed to their decisions to begin using cannabis in later life. The most important factor was legalization, which sparked a shift in beliefs around using cannabis and shaped the beginning of de-stigmatization around using this substance. Increasing acceptance in their social networks and visibility of cannabis in the media also informed decision-making. However, using cannabis for non-medicinal or social reasons remained stigmatized. DISCUSSION AND IMPLICATIONS: This research indicates that older adults' beliefs about cannabis use are shifting and this is likely related to legalization and broader social acceptance of cannabis. As a consequence, increased public health education is needed to improve health literacy about cannabis use during this stage of the life-course.

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.