Caregivers In Canada Research Articles

P.047 Survey of caregivers of individuals with NBIAs to identify relevant quality of life outcomes

Background: Neurodegeneration with Brain Iron Accumulation (NBIA) is a heterogenous group of disorders with the common theme of iron accumulation in the basal ganglia. These disorders typically present in childhood with progressive neurodegeneration and neuropsychiatric symptoms. Caring for an individual with NBIAs is intensive, however it is unknown what factors impact caregiver well-being and quality of life. Methods: Common themes were obtained via literature review of quality of life surveys in children with neurological and chronic illnesses. Five domains were addressed: Diagnosis, Communication, Symptom Management, Clinical Experience and Resources/Support. The survey was approved by the Family Advisory Committee at the CHEO Research Institute and the CHEO REB. The survey was distributed via the Rare Connect Platform to Canadian caregivers. Results: Survey responses are being analyzed and will be presented at the CNSF. Within each domain, Likert scales will be analyzed. Domains will be ranked according to the caregiver responses. Conclusions: Results of this survey will assist in developing care management guidelines, resources for families and help with future advocacy for patients and families affected by NBIAs. The results will also help guide future NBIA Canada Family Conferences.

Current and ideal living arrangements and supports for Canadian adults with fetal alcohol spectrum disorder: Part II-Perspectives from caregivers.

Caregivers supporting adults with fetal alcohol spectrum disorder (FASD) report concerns regarding living arrangements and services for their adult children with FASD. Best practices for living support for adults with FASD are under-researched, and few studies have explored the experiences of caregivers whose children are adults. This study examined the perspectives of caregivers who support adults (18+) with FASD regarding: (1) current ways adults with FASD are supported with daily life activities; and (2) ideal future living arrangements and supports. This article presents findings from the perspective of caregivers who support adults with FASD, as part of a broader project involving both adults with FASD and caregivers. Semi-structured interviews were conducted with 11 Canadian caregivers who live at home with an adult with FASD (aged 18+). Responses were examined using framework analysis, a structured approach to analyzing qualitative data. Caregivers described their experiences and perspectives regarding: (1) current ways adults with FASD are supported in their daily activities; (2) strategies for successful support; (3) ideal future living arrangements and supports; and (4) concerns for the future. Notably, almost every participant raised pressing concerns regarding the future living arrangements for the person they support once they are no longer able to provide care. This study explores caregivers' perspectives regarding living support needed by adults with FASD, which can inform support programs and housing services. Findings demonstrate an urgent need for policy change directed toward developing available, affordable, and appropriate housing for adults with FASD.

"I Would Have My Children Participate IF …": Perceptions of Canadian Caregivers Towards School Food Programs.

Purpose: The Canadian federal government has expressed an intention to work with provinces and territories to develop a national school food program (SFP). This study aimed to explore caregivers' perception of attributes important to include in a future SFP.Methods: An online cross-sectional survey was conducted. Fifteen elementary schools from high, medium, or low median income neighbourhoods in Saskatoon were invited to participate. School principals sent a survey link to students' caregivers. The 37-item survey included an item with 15 statements asking caregivers to rate the importance of various components of a SFP. Descriptive statistics and exploratory factor analysis were conducted.Results: A total of 510 caregivers completed the survey (response rate of 52%). The factor analysis indicated four key components of a future SFP: (1) learning opportunities on growing and preparing food, (2) offering healthy food following Canada's Food Guide, (3) affordability of the meals offered, and (4) cultural adaptability of the meal program. Over 90% of caregivers thought providing healthy meals and ample time to eat meals to be very important.Conclusion: Our results indicate caregivers support multicomponent meal programs that, along with providing nutritious food, help children build healthy habits and sustainable food systems. These findings will help dietitians understand caregivers' perspectives to inform the design of a national SFP.

Suicidal Ideation in Canadian Family Caregivers for a Person with Dementia: A Portrait of the Situation.

This study aimed to explore the prevalence of suicidal thoughts and potential associations (i.e., strength and direction) with caregiver characteristics or factors. A targeted survey was distributed to dementia caregivers aged 55+ years. Questions concerning psychological distress, suicidal thoughts while caregiving and antecedents of suicidal behaviours were administered. A sample of 71 French-speaking Canadian caregivers completed the survey between May and October 2019. Among them, 52.1 per cent (n = 37) reported suicidal ideation while providing care to a relative or a friend living with dementia. Caregivers who presented suicidal ideation reported more abusive behaviour toward the care recipient. Caregivers who reported suicidal thoughts were significantly more distressed than caregivers without them on measures of burden, depression, and anxiety. Suicidal thoughts in caregivers are important evaluation targets, primarily for the prevention of suicide, but also because caregivers who report suicidal thoughts also present a heightened risk for abusing the care recipient.

Engaging and Empowering Young Carers: Shifting the Focus for Public Awareness and Intervention in Canada

Over 8 million Canadians provide care to chronically ill or disabled family members. While most caregivers are between the ages of 45 and 54 (24%) and 55 and 64 years (20%), the third largest group is young carers. Carers between the ages of 15 and 24 account for 15% of all caregivers in Canada. This group of carers are those under the age of 25 that provide significant and ongoing unpaid care to a family member or friend. However, despite these known figures, very little attention has been paid to the existence of young carers in Canada except for scant emerging research. Our two-phased study aimed to first gain a better understanding of how young carers interact with the health system [how they are included in discussions and how is information shared with young carers]. The second phase focused on building on this body of knowledge by engaging young people and partnering with caregiver organizations in a more participatory, active manner to identify potential solutions to improve their involvement in supporting their family member’s healthcare use. In phase one, we applied a deductive analytical approach to identify touch points and pain points as perceived by participants. Our findings demonstrated that young carers interacted with the healthcare system at touch points spanning the home and community sectors, hospital and rehabilitation care, and primary and palliative care services. We also identified five types of pain paints that the young carer participants experienced in their caregiving roles: 1) desiring acknowledgement; 2) seeking information and communication; 3) managing system navigation; 4) engaging in balancing acts; and 5) performing point-of-care tasks. Phase two consisted of a virtual co-design event with the young carer participants, members of the partnering support organizations, and the research team. During the meeting, the group engaged in a brainstorming activity to identify priorities for our proposed project. The two priorities identified by our event were to 1) Build awareness of young carers for both healthcare organizations and healthcare practitioners and identify challenges in their recognition and support at point-of-care. And 2) Support the co-design of a prototype program that recognizes the needs of both young carers and healthcare workers during their healthcare interactions and that addresses the identified pain points. These results will inform the next steps that intend to explore to what extent are health care professionals aware of young carers and their support needs. Our program of research is adding to the national literature on Canadian young carers and provides more evidence to develop support provisions and interventions for young carers.

How Canadian caregivers of persons living with dementia are managing in a fragmented system

People living with dementia (PLWD) often need many different health and social services throughout their journey, and navigating and accessing these services can be challenging due to a lack of integration in dementia care. PLWD often rely on caregivers, usually family members, to help them navigate the system and access the care and services they need. The importance of better co-ordination and integration of health, community, and residential dementia services has been highlighted in the World Health Organization’s (WHO) global action plan on the public health response to dementia and Canada’s National Dementia Strategy, however a widespread, robust plan for integrated care for PLWD has yet to be implemented. This leaves caregivers with the task of seeking out and accessing services on their own. The Alzheimer Societies across Canada aim to help caregivers navigate and access services by providing information, education, and support in system navigation to caregivers. In this study, we explored the experiences of caregivers accessing health and social services for their loved ones with dementia, and the role that the Alzheimer Society played in this journey. This work has been informed and guided by members the Alzheimer Society of Canada’s People with Lived Experience Advisory Group.
 We conducted semi-structured interviews with 34 caregiver clients of the Alzheimer Society across Canada in the Fall of 2022. Interviews were completed by phone or video conference and lasted between 20 and 73 minutes (mean=32 minutes). Participants were all caregivers of a PLWD and ranged in age from 42-89 (mean age= 63 years). There were 10 men, 23 women, and one non-binary person in our sample (caregiver spouse=18, caregiver child=15, caregiver sibling=1). Interviews were recorded and transcribed verbatim. Deductive coding, based on the interview questions, was used to identify themes.
 Experiences accessing health and social services varied widely among participants based on geographic location, disease progression or symptoms, existing social support and self-advocacy skills, and finances. Many caregivers had trouble accessing the services that they needed and found the system to be difficult to navigate. In many cases, the Alzheimer Society played an important role in making caregivers aware of the health and community services available and provided guidance on how to access those services in a timely way. Some participants, however, found that despite being provided with information and education, they continued to struggle due to a lack of access to quality care in the community (e.g. adult day programs, respite, and long-term care). Some participants experienced such extreme distress at being unable to access the care they needed for the PLWD, that they experienced physical and mental health issues themselves. 
 The Alzheimer Society and similar organizations help to make up for the lack of an integrated care system for PLWD, however, there remain large gaps in the ability of caregivers to access timely, adequate care. Fragmented, disjointed, and difficult to access care can have negative consequences for PLWD and their caregivers, and action is needed to further support the development of integrated dementia care services across Canada.

Pediatric Delirium Educational Tool Development With Intensive Care Unit Clinicians and Caregivers in Canada: Focus Group Study.

Pediatric intensive care unit (PICU)-associated delirium contributes to a decline in postdischarge quality of life, with worse outcomes for individuals with delayed identification. As delirium screening rates remain low within PICUs, caregivers may be able to assist with early detection, for which they need more education, as awareness of pediatric delirium among caregivers remains limited. This study aimed to develop an educational tool for caregivers to identify potential delirium symptoms during their child's PICU stay, educate them on how to best support their child if they experience delirium, and guide them to relevant family resources. Web-based focus groups were conducted at a tertiary pediatric hospital with expected end users of the tool (ie, PICU health care professionals and caregivers of children with an expected PICU length of stay of over 48 h) to identify potential educational information for inclusion in a family resource guide and to identify strategies for effective implementation. Data were analyzed thematically to generate requirements to inform prototype development. Participants then provided critical feedback on the initial prototype, which guided the final design. In all, 24 participants (18 health care professionals and 6 caregivers) attended 7 focus groups. Participants identified five informational sections for inclusion: (1) delirium definition, (2) key features of delirium (signs and symptoms), (3) postdischarge outcomes associated with delirium, (4) tips to inform family-centered care, and (5) education or supportive resources. Participants identified seven design requirements: information should (1) be presented in an order that resembles the structure of the clinical discussion around delirium; (2) increase accessibility, recall, and preparedness by providing multiple formats; (3) aim to reduce stress by implementing positive framing; (4) minimize cognitive load to ensure adequate information processing; (5) provide supplemental electronic resources via QR codes; (6) emphasize collaboration between caregivers and the health care team; and (7) use prompting questions to act as a call to action for caregivers. Key design requirements derived from end-user feedback were established and guided the development of a novel pediatric delirium education tool. Implementing this tool into regular practice has the potential to reduce distress and assist in the early recognition and treatment of delirium in the PICU domain. Future evaluation of its clinical utility is necessary.

Challenges when monitoring and providing care to loved ones,Perspectives of Dementia caregivers in Canada

AbstractBackgroundFamily caregivers see firsthand the progression of their care recipient’s dementia and know every aspect of their lives and needs. They make important decisions on interventions and care. Currently, there are no measures that account for caregivers’ perspectives when evaluating the impact of dementia or interventions. The aim of this study was to explore the perspectives of caregivers’ of people living with dementia across Canada to generate domains for a new caregiver‐reported measure.MethodParticipants were recruited across Canada. Listening sessions were conducted virtually over three months, using open‐ended questions to encourage participants to share their perspectives. A semi‐structured interview guide was developed to facilitate the sessions. The interviewer asked questions to encourage caregivers to share their experiences on providing care, dementia monitoring, treatment impact and seeking alternative care. The data were coded and analyzed using NVivo. A thematic analysis approach was applied by two reviewers to analyze the data.ResultSeven listening sessions were conducted with 34 caregivers who were providing care to their loved ones with dementia. Seventy‐four percent of the participants were women and 59% had 6 or more years of caregiving experience. Each listening session included three to six caregivers and was approximately one hour long. Example of codes included gait limitations, distance walked, difficulties with memory, and changes in behaviour. Overall, data were organized into three broad themes (i) psychosocial impact of dementia, (ii) physical and emotional changes for dementia monitoring and treatment, (iii) symptomalogy changes for dementia monitoring and treatment.ConclusionThis study explored the perspective of caregivers across Canada, the activities and symptoms that are important to assess when evaluating dementia progression. It also questioned caregivers on how best to evaluate treatment effects. These findings may help identify strategies to better support caregivers and improve the quality of life of individuals living with dementia. Furthermore, the findings of this study can be a resource to help healthcare professionals, communities, and policymakers to provide better support for caregivers and the lives of individuals with dementia.

Making needle procedures comfortable for autistic children: Caregiver perspectives

BackgroundAutistic children are at greater risk for having difficulty undergoing needle procedures and poor management of their needle pain and fear. While there are general clinical practice guidelines (CPGs) available for managing pediatric needle pain and fear, it is unclear whether these strategies are appropriate for autistic children and their caregivers. MethodThe objective of this study was to explore caregiver perspectives on what is needed for needle procedures to be comfortable and CPGs to be appropriate for them and their autistic child. Twenty Canadian caregivers of autistic children were interviewed, including open-ended questions and ratings of how helpful CPG strategies would be for autistic children. ResultsUsing reflexive thematic analysis, four themes were identified: 1) autistic children’s sense of autonomy is important; 2) external factors impact autistic children’s comfort (e.g., environment, familiarity, healthcare providers); 3) caregivers play a key role by preparing themselves and others before needle procedures and 4) it is essential to tailor CPG strategies to children’s needs. ConclusionsFindings indicate that a child and family-centered approach is imperative to making needle procedures comfortable for autistic children. Practical recommendations for healthcare providers and caregivers are provided.

Voices from Service Providers Who Supported Young Caregivers throughout the COVID-19 Pandemic in the Canadian Context.

This empirical research is part of a larger project beginning in 2020 and ongoing until 2023, exploring the impact of the COVID-19 pandemic on young caregivers aged 5-25 years and their families in Canada. This qualitative research utilizes the social determinants of health as a conceptual framework and a collective case study design to emphasize the voices and experiences of service providers (professionals offering services to young caregiver clients) during the COVID-19 pandemic, and exploring their perspectives on the impact of the pandemic on young caregivers and their families. The central research question guiding this study was "How do service providers (professionals) working with young caregiver clients in Canada describe the impacts of the pandemic on themselves, their professional praxis, and on their young caregiver clients?" The aim of this study was to develop a deeper understanding of the impact of the pandemic on young caregivers in Canada, from the perspectives of service providers, as well as to understand the experiences of service providers in their own voices. Data were collected from service providers working within three (3) different organizations offering programs and services to young caregiver clients in Ontario, Canada. In total, six (6) individual interviews were conducted with service providers who were directors/program managers, and four (4) group interviews were conducted with thirteen (13) service providers who were frontline staff members who worked directly with young caregivers and their families. In total, nineteen (n = 19) unique service providers participated in this study. Our findings point to two primary overarching themes, namely (1) service providers' responses to the pandemic and (2) observations by service providers about the impacts of the pandemic on young caregivers, and a secondary theme, (3) positive outcomes from the COVID-19 pandemic on young caregivers, that emerged through the analysis. The pandemic led to increased demands for services by young caregiver clients. Service providers were required to adapt their service delivery methods in order to comply with public health guidelines. They shared how their work impacted their mental health as they struggled to maintain personal and professional boundaries while working from home during the pandemic. Importantly, service providers identified similar, simultaneous, and co-occurring impacts of the pandemic between their young caregiver clients, including isolation, difficulties in navigating online spaces, and challenges in navigating boundaries while working from home with family members.

Evaluation of a Knowledge Mobilization Campaign to Promote Support for Working Caregivers in Canada: Quantitative Evaluation.

As population demographics continue to shift, many employees will also be tasked with providing informal care to a friend or family member. The balance between working and caregiving can greatly strain carer-employees. Caregiver-friendly work environments can help reduce this burden. However, there is little awareness of the benefits of these workplace practices, and they have not been widely adopted in Canada. An awareness-generating campaign with the core message "supporting caregivers at work makes good business sense" was created leading up to Canada's National Caregivers Day on April 5, 2022. Our primary objective is to describe the campaign's reach and engagement, including social media, email, and website activity, and our secondary objective is to compare engagement metrics across social media platforms. An awareness-generating campaign was launched on September 22, 2021, with goals to (1) build awareness about the need for caregiver-friendly workplaces and (2) direct employees and employers to relevant resources on a campaign website. Content was primarily delivered through 4 social media platforms (Twitter, LinkedIn, Facebook, and Instagram), and supplemented by direct emails through a campaign partner, and through webinars. Total reach, defined as the number of impressions, and quality of engagement, defined per social media platform as the engagement rate per post, average site duration, and page depth, were captured and compared through site-specific analytics on Facebook, Instagram, Twitter, and LinkedIn throughout the awareness-generating campaign. The number of views, downloads, bounce rate, and time on the page for the website were counted using Google Analytics. Open and click-through rates were measured using email analytics, and webinar registrants and attendees were also tracked. Data were collected from September 22, 2021, to April 12, 2022. During this time, 30 key messages were developed and disseminated through 74 social media tiles. While Facebook posts generated the most extensive reach (137,098 impressions), the quality of the engagement was low (0.561 engagement per post). Twitter resulted in the highest percentage of impressions that resulted in engagement (24%), and those who viewed resources through Twitter spent a substantial amount of time on the page (3 minute 5 second). Website users who visited the website through Instagram spent the most time on the website (5 minute 44 second) and had the greatest page depth (2.20 pages), and the overall reach was low (3783). Recipients' engagement with email content met industry standards. Webinar participation ranged from 57 to 78 attendees. This knowledge mobilization campaign reached a large audience and generated engagement in content. Twitter is most helpful for this type of knowledge mobilization. Further work is needed to evaluate the characteristics of individuals engaging in this content and to work more closely with employers and employees to move from engagement and awareness to adopt caregiver-friendly workplace practices.

Caring for our caregivers in a pandemic: challenges, gaps and suggestions for change

Unpaid caregivers provide valuable care that saves the Canadian healthcare system billions of dollars every year. Caregiving is highly taxing, often resulting in psychosocial impacts that are associated with negative health outcomes and decreased quality of life for caregivers. These impacts are exacerbated when public health disasters occur, such as pandemics. This article employs a socioecological approach to explore how existing risk factors at the micro, meso and macro levels negatively impacted caregivers in Canada during the COVID-19 pandemic. We use these findings to suggest policy recommendations and advocate for better support for caregivers in the event of future pandemics or other disasters.

64 A Canadian multicentre survey of family needs when attending the pediatric emergency department

Abstract Background Parents/caregivers strongly influence their child’s experience in the pediatric emergency department (PED). Understanding their needs can improve families’ PED experience and care. Objectives To describe caregivers’ perceived emotional, practical, and informational needs in the PED and how well these needs were met Design/Methods This descriptive, cross-sectional survey with medical record review was conducted at 10 Canadian PEDs from October 2018 to March 2020, over a 1-week period every season, for a total of 4 weeks per site. Digital surveys available in English or French were completed by caregivers in the PED and 7 days after their visit. Health literacy was evaluated by the Newest Vital Sign tool. Results A total of 2005 caregivers participated; mean age was 37.8 (SD 7.7) years, and 74.3% (1462/1969) were mothers. The mean child age was 5.9 (5.1) years and 51.9 % (1040/2003) were male. Caregivers’ main spoken language was mostly English [72.6% (1425/1964)] or French [10.5% (206/1964)]. Over half of caregivers had a university/professional degree [51.0% (997/1956)]; 37.4% (746/1998) had possible/probable limited health literacy. 77.9% (1132/1454) of caregivers reported that their overall care needs were met. 71.7% (1081/1507) of caregivers reported that their emotional needs were met; they reported most emotional support by doctors [(35.6%, 535/1510)] and bedside nurses [(24.2%, 364/1507)]. The median (IQR) length of stay was 3.9 (2.6, 6.1) hours; 36.7% (546/1487) of caregivers felt they waited ‘too long’, and 77.8% (1158/1489) did not know how long they would have to wait. 11.7% of families were dissatisfied with the care updates provided. A safe PED was the top overall identified practical need [(45.1%, 602/1336)]. Internet access was the most important practical need throughout the visit [(28.1%, 378/1345)], while more space was the most reported [(49.8%, 696/1398)] need in the waiting room. The most desired improvements in the PED were better communication of wait times and delays [(41.1%, 745/1812)], shorter wait times [(38.8%, 699/1801)] and faster diagnosis [(24.9%, 449/1803)]. Conclusion Almost one quarter of Canadian caregivers report that their overall needs were not fully met when attending the PED. Safety during the PED visit was of utmost importance. Nationally, caregivers value shorter wait times, rapid diagnosis, and better communication about perceived delays. Top practical needs included internet access and more waiting room space. Creating innovative waiting systems, better methods to share wait time information, free internet access, and improved physical spaces could better address identified caregiver needs in the PED.

P65 A patient-led survey into the benefits and limitations of telemedicine appointments for assessing children and young people with rheumatic conditions: Comparing European and Canadian cohorts

Introduction/BackgroundDuring the COVID-19 (coronavirus) pandemic, some provision of healthcare shifted to remote, technology-assisted appointments (telemedicine). Whilst parents/carers of children and young people with rheumatic conditions have reported benefits of telemedicine, concerns remain.This patient and parent-led project sought to understand the views of parents/carers about telemedicine, identifying the benefits and limitations of remote technology-assisted appointments, and comparing views between Canadian and European cohorts.Description/MethodAn online survey was developed, translated into multiple languages and shared via social media and patient organisations, targeted at parents of children and young people with rheumatic, autoimmune and autoinflammatory conditions. Fieldwork took place in April 2021 in Europe and May 2021 in Canada. Consent was provided during enrolment.Discussion/ResultsA total of 290 responses were received (133 Europe; 157 Canada; 73% female, median age 12).Over half of respondents (53%) in Europe reported travelling over an hour to in-person appointments with their paediatric rheumatologist, compared to a significantly higher proportion of respondents in Canada (87%). Consequently, in-person appointments represent a greater time burden amongst Canadian caregivers, though both groups report appointments taking over three hours in total (51% Europe, 69% Canada).Prior to COVID-19, most had never had a telemedicine appointment (92% Europe, 95% Canada). Since March 2020, the majority (71% Europe, 82% Canada) had at least one telemedicine appointment. Table 1 shows the scores (1 worst, 5 best) given by parents about their telemedicine experience. Overall, most aspects scored positively (p<.05). However, parents felt telemedicine was not as good as in-person appointments.Table 1P65 Mean scores for a range of aspects of telemedicine (1-worst; 5-best). EuropeCanadaPEasy to schedule3.50 (3.18, 3.82) *4.33 (4.14, 4.52) * † On time3.22 (2.89, 3.55)4.07 (3.85, 4.28) * † Enough time with doctor3.51 (3.19, 3.83) *4.24 (4.02, 4.45) * † As good as in-person visit2.21 (1.96, 2.46) **2.66 (2.42, 2.90) ** Easier to see doctor2.84 (2.55, 3.13)3.51 (3.25, 3.77) * † Easy to sign-in3.52 (3.22, 3.82) *4.25 (4.06, 4.43) * † Quality of video3.23 (2.93, 3.53)3.87 (3.66, 4.07) * † Quality of sound3.54 (3.26, 3.81) *3.94 (3.75, 4.14) * Able to speak freely3.61 (3.34, 3.88) *4.05 (3.85, 4.24) * Able to understand doctor3.61 (3.32, 3.90) *4.09 (3.90, 4.28) * Quality of care provided3.43 (3.12, 3.73) *3.78 (3.56, 4.00) * Overall telemedicine experience3.23 (2.91, 3.55)3.78 (3.57, 3.99) * † *Positive score (p<.05).**Negative score (p<.05).†Difference between Canadian and European cohorts is statistically significant (p<.05), chi-square.Key learning points/ConclusionOverall respondents said they would prefer the next appointment to be in-person (82% Europe, 62% Canada, p<.05), although 31% from Canada were amenable to a combination of in-person and telemedicine-based care.There are advantages to telemedicine, notably saving time and making appointments accessible. Families from Canada tended to view telemedicine more favourably than those from Europe, although the majority from both cohorts reported concerns about the ability to assess their child. There may be value in providing training to parents to enhance the accuracy of home-based assessments, particularly when the disease is stable. However, parents continue to report the value of in-person appointments.

Variation in caregivers' references to their toddlers: Child-directed speech in Vanuatu and Canada.

The authors examined similarities and differences in Canadian and ni-Vanuatu caregivers' child-directed speech to their toddlers (N=35, Mage : 21 months, 20 girls). Speech samples were collected (2013-2016) during free play and analyzed with a focus on describing parents' references to their toddlers. Canadian caregivers referred significantly more to toddlers' tangible characteristics (relative risk, RR=2.12) and internal states (RR=2.31), whereas ni-Vanuatu caregivers referred more to actions (RR=2.04). When referring to internal states, Canadian mothers referred significantly more to mind-minded states, whereas ni-Vanuatu caregivers referred more to body-minded states (RR=7.98). These findings are interpreted as capturing meaningful differences in toddlers' opportunities to attend to themselves. Implications for self-concept development are discussed.

Assessing caregiving experience in COPD: content validity of the Zarit Burden Interview in Canadian and Portuguese caregivers

Purpose Informal caregivers play an important role in chronic disease management but their experience is often neglected. The objective of this study was to explore the content validity of the Zarit Burden Interview (ZBI) in caregivers of individuals with COPD in Canada and Portugal. Materials and methods Cognitive debriefing interviews were conducted with informal caregivers of individuals with moderate to very severe COPD. Participants completed the ZBI and verbalised their thinking process to assess the adequacy of the questionnaire’s content and instructions. Content validity was assessed using deductive content analysis of interviews and descriptive statistics of questionnaire responses. Results Nine caregivers from Canada (age = 67 ± 8 years) and 13 from Portugal (age = 69 ± 7 years) participated. For Canadian caregivers, 3/22 items were not understood, and 8/22 items were not relevant to at least 1/3 of them. For Portuguese caregivers, 1/22 items were not understood, and 20/22 items were not relevant to at least 1/3 of them. The distribution of response choices was approximately symmetrical for 17/22 items in the Canadian sample. The response option “no/never” was selected by at least 75% of Portuguese participants for 18/22 items. Conclusions The instrument was well understood by caregivers of people with COPD, but its relevance is uncertain. IMPLICATIONS FOR REHABILITATION Informal caregivers provide essential care for people living with disability and chronic disease, but their experience is often neglected. The Zarit Burden Interview assesses caregiver burden but has not been validated in caregivers of people with chronic obstructive pulmonary disease. In its current form, the Zarit Burden Interview does not adequately represent the experience of COPD caregivers. We recommend selecting tools that assess caregiver burden that have been validated in the caregiver population of interest.

Untreated Children's Pain Matters

Every day, healthcare practitioners perform simple medical procedures to assess and treat sick or injured children, and can cause them significant pain and distress.1,2 These common procedures include intravenous cannulation, heel lances, lumbar punctures, urethral catheterizations, wound repair, and medical imaging of injured limbs. Unfortunately, fear of needles is common, and is estimated to affect one quarter of adults and almost 2/3 of children.3 Almost 1/5 Canadian caregivers report needle fear as the primary reason for immunization non-compliance.4 While 5–7% have mentioned needle fear as a contributing factor to their COVID-19 vaccine hesitancy.

Perceptions of caregiving for people living with dementia and help-seeking patterns among prospective Korean caregivers in Canada.

Due to cultural influences, people from some ethnic minority groups expect to provide caregiving for their family members who suffer from illness. Little is known about the expectations about caregiving and the help-seeking process among the Korean population in Canada. Thus, the purpose of this study is to examine perceptions of caregiving for people living with dementia and help-seeking patterns among prospective Korean caregivers who anticipate becoming primary caregivers of their older relatives with dementia. An exploratory qualitative study was conducted in Montreal, Canada. In-depth semi-structured interviews were conducted with nine prospective Korean caregivers. The interviews were analysed using a qualitative thematic analysis. This study found four emerging themes: (1) the importance of family care; (2) the ability to find resources outside of the family; (3) the roles of Korean churches as a support system and; (4) the perceptions of service providers and health care settings. The findings of this study suggest that linguistic support services enable family caregivers to access more health and social services. Resources may be more easily accessed by Korean communities when provided through churches.

A multicentre Canadian survey of caregiver perspectives on COVID vaccine-related pain and stress for their family.

Caregiver hesitancy for their children to receive the COVID-19 vaccine remains due to concerns regarding safety and efficacy, but also due to fear of vaccine administration-related pain and distress. Study objectives were to determine caregivers' perceptions regarding both their personal and child's COVID-19 vaccine administration-related stress and fear and relate this to their likelihood to allow their child to receive COVID-19 vaccinations. This study was a secondary data analysis of a multicentre, cross-sectional survey of caregivers presenting to four Canadian pediatric emergency departments. Caregivers were surveyed between December 2020 and March 2021 and completed a digital survey on their own smartphones. 331 caregivers responded to the survey (mean age 39.9 years [SD 7.71]); 74.2% (245/331) were mothers. Children's mean age was 8.8 years [SD 5.4]; 49.8% (165/331) were female. 64.1% (209/326) of caregivers were willing to vaccinate their child against COVID-19, while 35.9% (117/326) were not. Greater perceived COVID-19 vaccine administration-related pain (0.88 [0.80; 0.95], p = .003) and stress (0.82 [0.76; 0.89], p = <.001) for their child as well as greater perceived personal stress with their own COVID-19 vaccine administration (0.81 [0.75; 0.88], p = <.001) were associated with caregivers being less likely to vaccinate their child. During the time period between COVID-19 pandemic waves 2 and 3, and after the vaccine had been federally approved for adults, one-third of Canadian caregivers surveyed reported being unwilling to vaccinate their child against COVID-19 in the future. Managing children's and caregivers' vaccine administration-related fear and stress may improve vaccine uptake for children.

A Cross-Sectional Analysis of Medical Crowdfunding Requests for Neurological Patients and Caregivers in Canada (P1-1.Virtual)

A Cross-Sectional Analysis of Medical Crowdfunding Requests for Neurological Patients and Caregivers in Canada (P1-1.Virtual)