A Systematic Review of the Impacts of Media Mental Health Awareness Campaigns on Young People.

Mental health issues are prevalent among young people. An estimated 10% of children and adolescents worldwide experience a mental disorder, yet most do not seek or receive care. Media mental health awareness campaigns, defined as marketing efforts to raise awareness of mental health issues through mass media, are an effort to address this concern. While previous research has evaluated the outcomes of specific media mental health awareness campaigns, there is limited data synthesizing their overall effects. This study addresses the knowledge gap by reviewing the existing literature on the impact of media mental health awareness campaigns on young people. A search was conducted on MEDLINE, EMBASE, PsychINFO, Web of Science, and Google Scholar for studies published between 2004 and 2022 with results specific to people aged 10 to 24. Out of 20,902 total studies identified and screened, 18 studies were included in the review. The following data were extracted from each study: characteristics and descriptions of the campaign, evaluation design and sampling, and summary of impact. The review identified evaluations of 15 campaigns from eight different countries. Outcome evaluation methods commonly comprised of surveys and quantitative data. The campaigns were generally associated with positive changes in the attitudes, beliefs, and intentions of young people (e.g., reduced stigma) and positive changes in behaviors (e.g., increased help-seeking behaviors). The inclusion of few studies in the review indicates a need for ongoing evaluations of media mental health awareness campaigns for young people to inform good practices in their development and distribution.

Technology in Dementia Education: An Ethical Imperative in a Digitized World.

Technology can support the delivery of care and improve the lives of people living with dementia. However, despite a substantial body of evidence demonstrating the benefits and opportunities afforded by technology, gaps remain in how technology and technology ethics are addressed in dementia care education. Here we discuss disparities in current educational programming and highlight the ethical challenges arising from underdeveloped knowledge exchange about dementia care technology. We put forward that for technology to be ethically deployed and maximized to improve outcomes, it must be embedded into dementia education programs and made widely accessible to the caregiver community.

Short Communication: Lived experience perspectives on genetic testing for a rare eye disease.

This qualitative study explored the motivators and barriers for genetic testing for individuals with aniridia. Semi-structured interviews were conducted with 8 participants. The main findings highlighted the complex and interrelated factors involved in the decision-making process, including family planning, learning about the specific pathogenic variant of the disease and having access to genetic testing. Benefits and potential risks of genetic testing for aniridia were also discussed. For participants, gaining knowledge about their condition was perceived as a benefit, while administrative issues and concerns around privacy were identified as risks. Increased access to quality information about genetic testing and to the service and associated resources are needed to better support people living with aniridia.

Community and Provider Evaluation of a Canadian Dementia Support Services Program.

Background: Community programs and services dedicated to support those living with dementia and care partners can improve their quality of life. In close collaboration with the Alzheimer Society of British Columbia, we evaluated the First Link® dementia support services, aiming to identify key strengths and areas of improvements to inform the services offered. Methods: A survey instrument was developed and distributed to people living with dementia, care partners, and health-care providers. Results: A total of 1,123 surveys were analyzed. Overall, respondents were satisfied with First Link dementia support services. Key strengths of the program included providing information and education for their clients to learn more about dementia and other resources in the community. Areas for improvement that were identified as part of this evaluation included additional supports for participants' mental health and well-being in terms of reducing stress, burden and isolation. Findings uncovered discrepancies in the way people living with dementia, care partners, and health-care providers view the effectiveness of the First Link dementia support services. Conclusion: An evaluation of programs and services for people living with dementia and their care partners can provide valuable insights about their experiences which can ensure that their needs are addressed.

Pain management communication between parents and nurses after pediatric outpatient surgery.

PURPOSE: The purpose of this study was to explore parent-nurse pain management communication during a child's discharge process following pediatric outpatient surgery. DESIGN AND METHODS: Thirty-two clinical encounters at discharge between parents (N = 40) and nurses (N = 25) at BC Children's Hospital were audio recorded and transcribed verbatim. Content analysis was applied on the audio recordings and corresponding transcripts using MAXQDA qualitative research software and Microsoft Excel. RESULTS: Overall, nurses delivered pain management instructions at an average sixth grade readability level and frequently used communication elements of reassurance, optimism, and question-asking. Less consistent communication elements included open-ended questions, interruptions, and promotion of parental decision-making. Parents most frequently asked one to five questions, with pain medication being the most inquired topic. CONCLUSIONS: Several strengths of the nurse communication approach were identified, and parent questions highlighted a need for greater understanding around pain medication. PRACTICE IMPLICATIONS: These findings will help guide effective pain management communication and care for young patients and their families.

The impact of respite care from the perspectives and experiences of people with amyotrophic lateral sclerosis and their care partners: a qualitative study.

BACKGROUND: Respite care provides caregiving support to people with amyotrophic lateral sclerosis (ALS) and their care partners by providing the care partner with temporary relief from their caregiving duties. The aim of this study was to explore the impact of respite care through the perspectives and lived experiences of people with ALS and their care partners. METHODS: Thirty-one dyads (62 participants) of people with ALS and their care partners were assigned to either the control group or the respite care intervention. Respite care was provided in the form of home-based services. Semi-structured interviews were conducted with participants at baseline and after a six-month period to gather perspectives on ALS caregiving, perceptions of respite care, and the respite care experience. Interviews were transcribed and subjected to thematic analysis. RESULTS: Caregiving challenges specific to the care partner and the patient-care partnership relationship were identified. Overall, people with ALS and care partners responded positively to in-home respite care and reported improved relationship quality, more time for the care partner to pursue personal commitments or take a break, and improved emotional well-being for both the person with ALS and the care partner. Barriers and concerns were raised surrounding privacy and staff consistency. CONCLUSION: This study highlights respite care as a critical tool to alleviate caregiving challenges and support the needs of people with ALS and their care partners. Engagement with the ALS community and formal evaluations of respite care services should be prioritized in order to minimize barriers and best meet the needs of people with ALS and their care partners.

The Impact of a Global Pandemic on People Living with Dementia and Their Care Partners: Analysis of 417 Lived Experience Reports.

BACKGROUND: The COVID-19 pandemic is impacting the physical and emotional health of older adults living with dementia and their care partners. OBJECTIVE: Using a patient-centered approach, we explored the experiences and needs of people living with dementia and their care partners during the COVID-19 pandemic as part of an ongoing evaluation of dementia support services in British Columbia, Canada. METHODS: A survey instrument was developed around the priorities identified in the context of the COVID-19 and Dementia Task Force convened by the Alzheimer Society of Canada. RESULTS: A total of 417 surveys were analyzed. Overall, respondents were able to access information that was helpful for maintaining their own health and managing a period of social distancing. Care partners reported a number of serious concerns, including the inability to visit the person that they care for in long-term or palliative care. Participants also reported that the pandemic increased their levels of stress overall and that they felt lonelier and more isolated than they did before the pandemic. The use of technology was reported as a way to connect socially with their loved ones, with the majority of participants connecting with others at least twice per week. CONCLUSION: Looking at the complex effects of a global pandemic through the experiences of people living with dementia and their care partners is vital to inform healthcare priorities to restore their quality of life and health and better prepare for the future.

Facilitating recruitment for dementia research: Insights from an international panel.

Dementia research is critical to improve dementia care; however, participation in this research remains limited, and recruitment is challenging. During an international panel at the 2018 Alzheimer Disease International Conference in Chicago, presentations were given to raise the profile of dementia research and share the patient experience of research participation. We observed notable shifts in perspectives on research participation from 39 participants who completed a survey before and after the presentations. These findings set the stage for future studies exploring the strength of independent motivations for research participation as well as improving recruitment efforts through education and peer support.

Barriers and Facilitators to Effective Pain Management by Parents After Pediatric Outpatient Surgery.

INTRODUCTION: The purpose of this study was to describe the experience of postoperative pain management from the perspectives of parents and identify areas for improvement. METHOD: Forty parents or legal guardians of children aged 5-18 years who underwent outpatient surgery at BC Children's Hospital were recruited. Qualitative semistructured interviews were conducted to explore participants' experiences with the discharge instructions and at-home pain management. RESULTS: Overall, participants reported positive experiences with pain management. Facilitators in pain management communication included the combination of verbal and written instructions. Barriers to effective pain management included discrepancies in the information provided by different health care professionals and the experience of stress at the time of pain management communication. DISCUSSION: The exploration of parent narratives highlighted the need for detailed information resources and patient-centered care surrounding pain management. The practical recommendations identified will inform future research and improve the quality of care for pediatric pain.

Improving the paediatric surgery patient experience: an 8-year analysis of narrative quality data.

BACKGROUND: Narrative data about the patient experience of surgery can help healthcare professionals and administrators better understand the needs of patients and their families as well as provide a foundation for improvement of procedures, processes and services. However, units often lack a methodological framework to analyse these data empirically and derive key areas for improvement. The American College of Surgeons National Surgical Quality Improvement Program (ACS NSQIP) is aimed at improving the quality of surgical care by collecting patient data and reporting risk-adjusted surgical outcomes for each participant hospital in the programme. Though qualitative data about patient experience are captured as part of the NSQIP database, to date no framework or methodology has been proposed, or reported on, to analyse these data for the purposes of quality improvement. The goal of this study was to demonstrate the feasibility of using content analysis to empirically derive key areas for quality improvement from a sample of 3601 narrative comments about paediatric surgery from patients and families at British Columbia Children's Hospital. STUDY DESIGN: Thematic content analysis conducted on a total of 3601 patient and family narratives received between 2011 and 2018. RESULTS: Overall satisfaction with care was high and experiences with healthcare providers at the hospital were positive. Areas for improvement were identified in the themes of health outcomes, communication and surgery timelines. Results informed follow-up interprofessional quality improvement initiatives. CONCLUSIONS: Recording and analysing patient experience data as part of validated quality improvement programmes such as ACS NSQIP can provide valuable and actionable information to improve quality of care.

Prioritizing Benefits: A Content Analysis of the Ethics in Dementia Technology Policies.

BACKGROUND: As the global prevalence of dementia rises, care costs impose a large burden on healthcare systems. Technology solutions in dementia care have the potential to ease this burden. While policies exist to guide and govern the use of dementia care technologies, little is known about how ethical considerations are incorporated into these documents. OBJECTIVE: The goal of this study was to examine ethics-related content in dementia care technology policies. METHODS: We used a two-step data mining approach to collect a sample of dementia technology policies. Policy documents were analyzed using emergent content analysis. Following the coding of the sample, thematic categories were organized using the principles of biomedical ethics as a framework. RESULTS: A total of 23 policy documents from four Alzheimer associations in four countries were included in our analysis. General ethics considerations and themes related to beneficence were mentioned in 96% of the documents. Thematic categories related to justice were present in 74% of the sample, themes related to non-maleficence appeared in 52% of documents, and themes related to autonomy appeared in 43% of the sample. CONCLUSION: While ethical considerations are present in existing policies for dementia care technology, these considerations revolve primarily around the benefit of the technologies. Further efforts are needed to provide formal guidance that incorporates both benefits and potential harms.