Young people with impaired functioning and/or disability do not receive as much education or as high an education as fully functioning young people, thus limiting their job opportunities. Therefore, the aim of this study was to investigate perspectives of young people with neuromuscular diseases regarding their choice of educational programs and possibilities to complete program requirements to gain knowledge for use in future counselling and the development of a national questionnaire survey. The design for this study was qualitative using the interpretive description methodology and Anthony Giddens\' theory on modernity and self-identity. Data were generated through two focus group interviews with seven people between 18 and 30 years of age. Beginning and completing an education was influenced by the creation of identity: the importance of experiencing demands and expectations, the meaning of social relations when learning, and the consequences of accessibility for educational opportunities. The participants\' sense of self-identity was built by testing boundaries and developing images through social relations with peers, parents, and teachers. How they acted and behaved in the social arena of school and education influenced their choices and chances of completing educational programs.

BACKGROUND: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries.
UNASSIGNED: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention.
RESULTS: Thirty-eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers\' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI.
CONCLUSIONS: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources.
UNASSIGNED: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

BACKGROUND: Knee OA (KOA) can lead to pain, loss of muscle strength, and changes in gait. Knee stiffness is a classic feature of KOA that can increase the risk of falls but has been understudied.
OBJECTIVE: To evaluate the impact of knee stiffness, the factors influencing the severity of stiffness, and the repercussions on participation for patients with KOA.
METHODS: This qualitative study used an interpretive description approach. Purposeful sampling was used for patients with KOA over 45 years of age, fluent in English, diagnosed with KOA and reported KOA stiffness within the last 6 months. Participants were recruited through social media and Ontario clinics. Semi-structured interviews were conducted over the phone or using zoom, recorded, and transcribed verbatim. Open, axial, and selective coding were used to identify clinically relevant themes.
RESULTS: Twelve participants (5F, 7M) with a mean age of 60 years were included. The five themes identified include elusive and variable perceptions of joint stiffness, inactivity or too much activity exacerbates stiffness, adapting to the ebb and flow of symptoms, risk experiences and safety fears leads to reduced participation, and KOA stiffness impairs quality of life.
CONCLUSIONS: This study highlights characteristics of knee stiffness, consequences on participation, and quality of life for people with KOA. Monitoring knee stiffness for KOA is recommended for more appropriate treatment intensity, which could improve adherence to a home programme and potentially reduce the risk of falls.

Cervical cancer is one of the leading causes of cancer-related death among African women. Unfortunately, in most sub-Saharan African nations, women are vulnerable if they are unaware that cervical cancer is preventable with frequent screening and early treatment. The aim of this study was to examine Black African immigrant women\'s perceptions and experiences of cervical screening in British Columbia, Canada. Twenty Black African immigrant women were interviewed using the qualitative research method Interpretive Description. Data collection approaches included indepth interviews and analytic memos. Data were analyzed using a constant comparative technique guided by a socioecologic framework to capture subjective experiences and perceptions. Four key themes were identified, including confusing conceptualizations about cancer and cancer screening, competing priorities, concerns for modesty, and commitment to culture. The study findings point to the need for more active approaches to promoting cervical screening for this population.

OBJECTIVE: To explore frontline decision-making, adaptation, and learning in ambulance care during the evolving COVID-19 pandemic.
METHODS: Descriptive and interpretative qualitative study.
METHODS: Twenty-eight registered nurses from the Swedish ambulance services described 56 critical incidents during the COVID-19 pandemic through free-text questionnaires. The material was analysed using the Critical Incident Technique and Interpretive Description through the lens of potential for resilient performance.
RESULTS: The findings were synthesized into four themes: \'Navigating uncharted waters under never-ending pressure\', \'Balancing on the brink of an abyss\', \'Sacrificing the few to save the many\' and \'Bracing for the next wave\'. Frontline decision-making during a pandemic contribute to ethical dilemmas while necessitating difficult prioritizations to adapt and respond to limited resources. Learning was manifested through effective information sharing and the identification of successful adaptations as compared to maladaptations.
CONCLUSIONS: During pandemics or under other extreme conditions, decisions must be made promptly, even amidst emerging chaos, potentially necessitating the use of untested methods and ad-hoc solutions due to initial lack of knowledge and guidelines. Within ambulance care, dynamic leadership becomes imperative, combining autonomous frontline decision-making with support from management. Strengthening ethical competence and fostering ethical discourse may enhance confidence in decision-making, particularly under ethically challenging circumstances.
CONCLUSIONS: Performance under extreme conditions can elevate the risk of suboptimal decision-making and adverse outcomes, with older adults being especially vulnerable. Thus, requiring targeted decision support and interventions. Enhancing patient safety in ambulance care during such conditions demands active participation and governance from management, along with decision support and guidelines. Vertical communication and collaboration between management and frontline professionals are essential to ensure that critical information, guidelines, and resources are effectively disseminated and implemented. Further research is needed into management and leadership in ambulance care, alongside the ethical challenges in frontline decision-making under extreme conditions.
UNASSIGNED: Findings are reported per consolidated criteria for reporting qualitative research (COREQ).
UNASSIGNED: No Patient or Public Contribution.

UNASSIGNED: To investigate how people with neuromuscular disease or spinal cord injury experience living with a personal assistance service.
UNASSIGNED: Qualitative study using the Interpretive Description methodology with Aaron Antonovsky\'s theory of sense of coherence as a theoretical framework. The method was semi-structured individual interviews (n = 3) and focus group interviews (n = 5). In all, 19 adults with neuromuscular disease (n = 13) or spinal cord injury (n = 6) participated. The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines.
UNASSIGNED: Three themes were identified to understand living with personal assistance and how this affected everyday life: 1) Making meaning of a personal assistance service, 2) Managing a personal assistance service, and 3) Living with a personal shadow. Our findings provide an understanding of living with assistance and how it, among other things, is influenced by the legislation and the local authorities\' administration of the service. Participants explained this by an experience of a sense of coherence.
UNASSIGNED: For people with NMD and SCI, there are complex nuances associated with living with a personal assistance service. The findings illustrate that despite personal challenges of managing assistance services, it can meaningfully contribute to one\'s life by enhancing one\'s sense of coherence.
Policy initiatives are important to help people living with neuromuscular disease (NMD) or spinal cord injury (SCI) access flexible personal assistance services, which can enable them to lead independent lives with enhanced meaningfulness.Professionals of people with NMD and SCI should provide knowledge and counseling on how to manage their personal assistance service, which includes taking into account practical, physical, and psychosocial considerations.To ensure optimizing the design and delivery of personal assistance services for the NMD and SCI populations, it is critical that policymakers are made aware of both the positive and challenging aspects of personal assistance services, and should consider engaging persons with lived experience when developing (or re-evaluating) them.

BACKGROUND: Despite cardiac rehabilitation and medical treatment being integrated parts of the pathway of patients with cardiovascular disease, as well as the well-establish positive effect, cardiac rehabilitation remains underutilised. In recent years, cardiac rehabilitation has increasingly been moved from the hospitals to the community healthcare services. This transition may be challenging for patients with cardiovascular disease.
OBJECTIVE: To investigate reflections and perspectives of patients opting out of cardiac rehabilitation in community healthcare services to improve participation and adherence to cardiac rehabilitation in the future.
RESULTS: A total of eight patients opting out of cardiac rehabilitation participated in individual interviews. Opting out of cardiac rehabilitation is defined as never enroled or did not complete cardiac rehabilitation. The Interpretive Description methodology was used in the analysis where two themes and six subthemes were identified: (1) \'Structural and organisational factors\' with three subthemes; Being a patient in the healthcare system, Enroling into CR when it is meaningful, and Getting back to work is vital, and (2) \'Patients\' internal factors\' with three subthemes; Feeling a desire to regain control, Seeing yourself as recovered, and Being aware of own needs. The analysis indicates that patients\' decision to opt out of CR was multidimensional and based on a combination of factors.
CONCLUSIONS: Ensuring that the healthcare professionals in the community have sufficient information regarding the patient and a clear communication plan between the healthcare professionals and the patient may reduce the transition causing confusion and frustrations for patients. Incorporating a vocational element in CR and ensuring that employers understand the importance of CR may hamper returning to work as a challenge to CR. Ensuring timely CR referral and enrolment and a transition coordinator may reduce the challenge of patients not viewing CR as meaningful. However, further studies are needed to fully understand how CR could become meaningful for patients opting out of CR.

BACKGROUND: In Swedish intensive care units, nine percent of patients do not survive despite receiving advanced life-sustaining treatments. As these patients transition to end-of-life care, ethical considerations may become paramount.
OBJECTIVE: To explore the ethical challenges that critical care nurses encounter when caring for patients at the end of life in an intensive care context.
METHODS: The study used a qualitative approach with an interpretive descriptive design.
UNASSIGNED: Twenty critical care nurses from eight intensive care units in an urban region in Sweden were interviewed, predominately women with a median age of fifty-one years.
METHODS: This study was approved by The Swedish Ethics Review Authority.
RESULTS: Critical care nurses described encountering ethical challenges when life-sustaining treatments persisted to patients with minimal survival prospects and when administering pain-relieving medications that could inadvertently hasten patients\' deaths. Challenges also arose when patients expressed a desire to withdraw life-sustaining treatments despite the possibility of recovery, or when family members wanted to shield patients from information about a poor prognosis; these wishes occasionally conflicted with healthcare guidelines. The critical care nurses also encountered ethical challenges when caring for potential organ donors, highlighting the balance between organ preservation and maintaining patient dignity.
CONCLUSIONS: Critical care nurses encountered ethical challenges when caring for patients at the end of life. They described issues ranging from life-sustaining treatments and administration of pain-relief, to patient preferences and organ donation considerations. Addressing these ethical challenges is essential for delivering compassionate person-centered care, and supporting family members during end-of-life care in an intensive care context.

COVID-19 illustrated what governments can do to mobilise against a global threat. Despite the strong governmental response to COVID-19 in Canada, another \'pandemic\', gender-based violence (GBV), has been causing grave harm with generally insufficient policy responses. Using interpretive description methodology, 26 interviews were conducted with shelter staff and 5 focus groups with 24 executive directors (EDs) from GBV service organizations in Ontario, Canada. Five main themes were identified and explored, namely that: (1) there are in fact four pandemics at play; (2) the interplay of pandemics amplified existing systemic weaknesses; (3) the key role of informal partnerships and community support, (4) temporary changes in patterns of funding allocation; and (5) exhaustion as a consequence of addressing multiple and concurrent pandemics. Implications and recommendations for researchers, policy makers, and the GBV sector are discussed.

BACKGROUND: Diabetes distress is commonly seen in adults with pre-existing diabetes and is associated with worsened glycemic management and self-management practices. While a majority of women report increased stress during pregnancy, it is unknown how women with type 1 or type 2 diabetes experience diabetes distress during this unique and transitional time.
OBJECTIVE: This study aimed to understand the experiences and perceptions of diabetes distress in women with pre-existing diabetes during pregnancy.
METHODS: A qualitative study using an interpretive description approach was conducted. In-depth, one to one interviewing was used to capture rich descriptions of the pregnancy experience. Nested, stratified, and theoretical sampling was used to recruit 18 participants with type 1 and type 2 diabetes from the quantitative strand of this mixed methods study. Constant comparative analysis was used to inductively analyze the data and develop themes.
RESULTS: Four themes, each with several subthemes, emerged under the main finding of \"Diabetes Distress\": 1) Worry for Baby\'s Health - \"What\'s this going to do to the baby?\"\' 2) Feeling Overwhelmed with Diabetes Management-\"It just seemed unattainable\"; 3) Living with Diabetes - \"There\'s no way out\" and 4) Cycle of Diabetes Distress.
CONCLUSIONS: The findings from this study identify the sources and experiences of diabetes distress during pregnancy in women with pre-existing diabetes. Diabetes distress often presents as cyclical and multifaceted during pregnancy, with elements of fear for the unborn baby, difficulties with diabetes management, and having negative lived experiences of diabetes. Further work is needed to develop appropriate screening tools for pregnancy and interventions to mitigate diabetes distress. Diabetes educators are well-positioned provide emotional support and person-centred self-management education to individuals with diabetes.