Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.

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. RESEARCH DESIGN AND OBJECTIVE: 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. FINDINGS: 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. DISCUSSION AND IMPLICATIONS: 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. PATIENT OR PUBLIC CONTRIBUTION: 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.

Perspectives of Young People with Neuromuscular Diseases Regarding Their Choice of Educational Programs and Possibilities to Complete Program Requirements.

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.

Patient Experience of Stiffness With Knee Osteoarthritis: An Interpretative Description Study.

INTRODUCTION: 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. CONCLUSION: 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.

Bracing for the next wave: A critical incident study of frontline decision-making, adaptation and learning in ambulance care during COVID-19.

AIM: To explore frontline decision-making, adaptation, and learning in ambulance care during the evolving COVID-19 pandemic. DESIGN: 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. IMPACT: 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. REPORTING METHOD: Findings are reported per consolidated criteria for reporting qualitative research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution.

Cervical Cancer Screening Uptake and Experiences of Black African Immigrant Women in Canada.

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.

Experiences and reflections on living with a personal assistance service: a qualitative study of people with neuromuscular disease or spinal cord injury.

PURPOSE: To investigate how people with neuromuscular disease or spinal cord injury experience living with a personal assistance service. MATERIALS AND METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Opting out of cardiac rehabilitation in local community healthcare services: Patients' perspectives and reflections.

RATIONALE: 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. AIM: 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. CONCLUSION: 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.

Critical care nurses' experiences of ethical challenges in end-of-life care.

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. AIM: To explore the ethical challenges that critical care nurses encounter when caring for patients at the end of life in an intensive care context. RESEARCH DESIGN: The study used a qualitative approach with an interpretive descriptive design. RESEARCH CONTEXT AND PARTICIPANTS: 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. ETHICAL CONSIDERATIONS: This study was approved by The Swedish Ethics Review Authority. FINDINGS: 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. CONCLUSION: 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.

Perceptions of diabetes distress during pregnancy in women with type 1 and type 2 diabetes: a qualitative interpretive description study.

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. PURPOSE: 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. FINDINGS: 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.

The Examination and Exploration of Diabetes Distress in Pre-existing Diabetes in Pregnancy: A Mixed-methods Study.

OBJECTIVES: Diabetes distress (DD) has been understudied in the pregnancy population. Pregnancy is known to be a complex, highly stressful time for women with diabetes because of medical risks and the high burden of diabetes management. Our aim in this study was to explain and understand DD in women with pre-existing diabetes in pregnancy. METHODS: An explanatory, sequential mixed-methods study was undertaken. The first strand consisted of a cross-sectional study of 76 women with type 1 and type 2 diabetes. A nested sampling approach was used to re-recruit 18 women back into the second strand for qualitative interviews using an interpretive description approach. RESULTS: DD was measured by the validated Problem Area in Diabetes (PAID) scale. A PAID score of ≥40 was positive for distress. DD prevalence was 22.4% in the cross-sectional cohort and the average PAID score was 27.75 (standard deviation 16.08). In the qualitative strand, women with a range of PAID scores (10.0 to 60.0) were sampled for interviews. The majority of these participants described themes of DD in their interviews. Of the 15 women who described DD thematically, only 6 had positive PAID scores. CONCLUSIONS: Integration of the mixed-methods data underscores important meta-inferences about DD in pregnancy, namely that DD was present to a greater degree than the PAID tool is sensitive to. DD was present qualitatively in most of the qualitative sample, despite interviewing women with a range of PAID scores. Future research on a pregnancy-specific DD scale is needed.

"People want better": a qualitative exploration of stakeholders' views on introducing well-being coordinators in the screen industry.

PURPOSE: There are several factors that negatively impact the well-being of those working in the screen industry. Consequently, the need to introduce Well-being Coordinators has been identified. This study explored the experiences of participants who undertook a Well-being Coordination course tailored for the screen sector. Additionally, it sought to delve into perspectives regarding well-being within the screen industry. METHODS: Semi-structured interviews were conducted. The study was guided by an interpretive descriptive approach. Reflexive thematic analysis was used to analyse data. FINDINGS: Five themes were identified: Opportunities and challenges working in the screen industry, co-existing with harassment, the need for change: importance of wellbeing, becoming a well-being co-ordinator: learning from the course, and the future of the well-being co-ordinator role: opportunities and challenges. The reality that cast and crew co-exist with several forms of harassment within the industry was noted. Despite this, there is hope for the future of the screen sector, particularly the positive impact the role of the Well-being Coordinator could have. CONCLUSIONS: The experiences of professionals across the screen industry vary; however, a pervasive culture of bullying and harassment is commonplace. Through the introduction of Well-being Coordinators, there is the potential to enact positive change.

Australian physiotherapists attitudes, perceptions, and behaviours towards psychosocial screening tools: a qualitative interpretive description study.

PURPOSE: Psychosocial factors are a barrier to recovery for people with musculoskeletal pain and psychosocial screening tools are consistently recommended by best practice guidelines to assist in identification. However, many physiotherapists do not use these tools. Presently, the perspectives on psychosocial screening tools of Australian physiotherapists are unknown. Exploration of these factors may create targets for increased uptake. The purpose of this paper is to qualitatively explore Australian physiotherapists' attitudes, perceptions, and behaviours towards psychosocial screening tools for musculoskeletal pain conditions. MATERIALS AND METHODS: An Interpretive description qualitative study design was employed. Seventeen Australian physiotherapists were interviewed about their attitudes, perceptions, and behaviours towards psychosocial screening tools. Interviews were transcribed verbatim and analysed according to interpretive description. RESULTS: Analysis highlighted three major themes: (1) understanding the patient through psychosocial screening, (2) confidence and competence with psychosocial factors, and (3) factors outside of my control influence screening. CONCLUSIONS: This study presents a deeper understanding of Australian physiotherapists' diverse attitudes and practices regarding psychosocial screening tools. The research highlights not only the variability in perspectives towards the relevance of psychosocial factors in patient assessments, but also the influence of external elements such as patient demographics and clinic culture on the utilization of these screening methods.

Australian physiotherapists' varying attitudes and limited understanding of the impact of psychosocial factors may hinder the use of recommended psychosocial screening.Concerns about scope of practice, tool appropriateness for different patients, and clinic culture further challenge the integration of psychosocial assessments.The findings from this study indicate the need to provide more education to Australian physiotherapists on the importance and use of psychosocial risk factor screening, as part of clinical care standards and best practice guidelines in the management of patients, with musculoskeletal pain conditions.The findings from this study can support the creation of targeted training/innovations to improve the uptake of screening tools in Australian musculoskeletal clinical practice, to improve the care of patients with musculoskeletal pain conditions.

The Evolving Complexities of MAID Care in Canada From a Nursing Perspective.

Medical Assistance in Dying (MAID) legislation has evolved rapidly in Canada with significant impacts on nursing practice. The purpose of this paper is to describe evolving complexities in legislative context and practice standards that influence the experiences nurse practitioners and registered nurses have with MAID. Qualitative interviews were conducted with 25 registered nurses and 10 nurse practitioners from diverse contexts across Canada. Participants described their practices and considerations when discussing MAID as part of advance care planning; their use of, and challenges with, waivers of consent; their practice considerations in negotiating the complexities of clients for whom death is not reasonably foreseeable; and their moral wrestling with the inclusion of MAID for persons whose sole underlying medical condition is mental illness. Findings illustrate the moral complexities inherent in the evolving legislation and the importance of robust health and social care systems to the legal and ethical implementation of MAID in Canada.

Experiences of an interprofessional follow-up program in primary care practice.

BACKGROUND: An integrative cooperation of different healthcare professional is a key component for high quality health services. With an aging population and many with long-term conditions, more health tasks and follow-up care are being transferred to primary care and locally where people live. Interprofessional collaboration among providers of different professional designations will be of increasing importance to optimizing primary care capacity in years to come. There is a call for further exploration of models of interprofessional collaboration that might be applicable in Norwegian primary care. The aim of this study was to explore experiences of interprofessional collaboration between primary care physicians and nurses working in primary care by applying an intervention for people with type 2 diabetes. Specifically, this study was designed to strengthen and gain deeper insight into interprofessional collaboration between primary care physicians and nurses in primary care settings. METHODS: We applied Interpretive Description as a research strategy. The participants within this study were primary care physicians and nurses from four different primary care practices in the western and eastern parts of Norway. We used semi-structured telephone interviews for collecting the data between January and September 2021. RESULTS: The analysis revealed two key features of the primary care physicians and the nurses experience with interprofessional collaboration in primary care practices. The first involved managing the influence of discrepancies in their expectations of IPC and the second involved becoming aware of the competence they developed that allowed for better complementarity consultation. CONCLUSIONS: This study indicates that interprofessional collaboration in primary care practice requires that primary care physicians and nurses clarify their expectations and, in turn, determine how flexible they can become in changing their usual primary care practices. Moreover, findings reveal that nurses and primary care physicians had discrepancies in expectations of how interprofessional collaboration should be carried out in primary care practice. However, both the nurses and primary care physicians appreciated the blending of complementary competencies and skills that facilitated a more collaborative care practice. They experienced that this interprofessional collaboration represented an essential quality improvement in the primary care services. TRIAL REGISTRATION: The trial is registered 03/09/2019 in ClinicalTrials.gov (ID: NCT04076384).

Psychiatrists' perceptions of and reactions to a simulated psychiatric genetic counseling session.

Psychiatric genetic counseling (pGC) has been demonstrated to have meaningful positive outcomes for people with psychiatric conditions and their families. However, it is not widely accessed, and clinical genetics services tend to receive few referrals for these indications. Little research has evaluated psychiatrists' perceptions of and experience with interfacing with pGC. Therefore, we invited Ontario-based psychiatrists to participate in a study in which they first watched a simulated pGC session (representative of typical practice: the patient had depression with no exceptionally dense family history of psychiatric conditions, no genetic testing is provided, and no family-based risk assessment is performed), then completed zoom-based qualitative semi-structured interviews. Interviews were recorded, transcribed verbatim and checked for accuracy. Using interpretive description to analyze interviews with 12 psychiatrists (data collection was stopped at this point, as theoretical sufficiency was achieved), we generated two theoretical models: the first described the decision-making pathway psychiatrists currently follow when determining whether and how to address genetics with a patient; the second described psychiatrists' ideas for integrating pGC into care models for the future. Our data shed light on how to facilitate the delivery of pGC for people with psychiatric conditions and their families.

Exploring caregiver and participant experiences of the Program for the Education and Enrichment of Relational Skills (PEERS®) for youth with acquired brain injury and cerebral palsy.

PURPOSE: This study explored the experience of adolescents with brain injuries and their caregivers who participated in the Program for the Education and Enrichment of Relational Skills (PEERS®) in Australia. MATERIALS AND METHODS: Twenty-seven adolescents and 31 caregivers, who completed the PEERS® intervention as part of an RCT, contributed to focus groups following the 14-week program. Semi-structed interviews guided focus groups. An interpretive description methodology was used to understand participants' experiences in the program and suggestions for improvements. RESULTS: Thematic analysis led to the development of five themes. "Challenging families and meeting expectations" explored the challenge and worth of participating. "Learnt new skills" highlighted skills and strategies gained and methods used to achieve these. "Connecting, belonging and understanding that's our normal" represented the value placed on the group experience. "Confidence in knowing and doing" reflected the changes in everyday social experiences and "Where to from here?" provided many suggestions for adaptation to improve practice. CONCLUSION: After taking part in the PEERS® social skills group intervention, most adolescents with brain injury and their caregivers perceived improvement in their social participation and had suggestions for improving the group experience. Some adolescents didn't enjoy the program.IMPLICATIONS FOR REHABILITATIONOffering adolescents with brain injury and their caregivers the opportunity to participate in a group social skills intervention is an important part of paediatric rehabilitation.Participants of group social skills interventions are likely to perceive improvements in their everyday social functioning following completion.Considering strategies to enhance engagement in the group is expected to be important for outcomes.Participants of group social skills programs may need additional support and adjustments to balance the demands of the intervention with other everyday family and school tasks and requirements.

Qualitative Study of Nurses' Experiences as They Learned to Provide Neonatal Palliative Care.

OBJECTIVE: To describe the experiences of nurses as they learned to provide palliative care in the NICU. DESIGN: Interpretive description. SETTING: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers. PARTICIPANTS: Nine NICU nurses with 3 to 21 years of experience who provided neonatal palliative care. METHODS: We collected data using online interviews that we recorded and transcribed. We analyzed data using immersion, inductive coding, reflective memoing, and thematic analysis. RESULTS: Participants received little or no formal education in neonatal palliative care and instead learned to provide this care through observation and experience. Participants said it was important to find meaning in their work, which contributed to their motivation to learn to provide high-quality neonatal palliative care. Participants described challenges, including unit cultures in which early palliative care was not embraced. We identified three overarching themes that represented the participants' experiences: Meaning-Making in Neonatal Palliative Care, Challenges in Providing Neonatal Palliative Care, and Ill-Prepared to Provide Neonatal Palliative Care. CONCLUSION: Standardized education may improve the quality of care and nurses' experiences with neonatal palliative care. We recommend designing and evaluating a standardized curriculum on neonatal palliative care.

Living with chronic obstructive pulmonary disease or type 2 diabetes in Greenland - a qualitative interpretive description study.

Non-communicable diseases such as chronic obstructive pulmonary disease (COPD) and type 2 diabetes mellitus (T2D) represent major challenges for health systems all over the world. In an interview study, we explored patient experiences and perspectives of being diagnosed and living with COPD or T2D in Greenland. Participants (n = 24) were selected by purposeful sampling and recruited by phone. We conducted individual semi-structured interviews at the National Hospital in Nuuk and the four regional hospitals. Interviews were audio-recorded, transcribed verbatim, and analysed using interpretive description. Three themes emerged: shock and shame on receiving the diagnosis, coping with a changed life, and varying needs for care and communication. We found that being diagnosed with COPD or T2D required a rapid change in the participants' everyday lives and lifestyle behaviours. Some self-managed their disease well and were able to transfer their knowledge and integrate it into their daily lives, while others struggled to make lifestyle changes. Additionally, living with COPD or T2D could be related to silence and shame. The findings contribute to a better understanding of living with COPD or T2D in the Arctic region and the development of future, culturally-adapted patient education initiatives.

People with neuromuscular diseases and their relatives' perspectives on challenges in everyday life and healthcare.

Objective: People with a neuromuscular disease (NMD) often experience challenges in everyday life and healthcare. Aim: To investigate experiences of and perspectives on challenges in everyday life and healthcare of people with NMDs and their relatives to gain new insights into how life-long rehabilitation can be tailored. Patients & methods: The design was qualitative using the interpretive description methodology and the Sense of Coherence theory. An ethnographic fieldwork was conducted where 45 persons with NMD and their relatives were included for interviews and participant observations. Results & conclusion: People with NMDs continually adapt to a changing functioning and balance their need for knowledge with their dependency on help when navigating the healthcare system. Structured, professionally facilitated peer support is needed.

What is this article about? The term neuromuscular disease (NMD) covers a range of diagnosis that affect the nervous system and result in muscle weakness and wasting, respiratory challenges, and other symptoms. The symptoms from the disease depend on the specific NMD diagnosis and can vary from mild to severe symptoms. The diseases can have a relatively stable course or rapid advancement as in amyotrophic lateral sclerosis (ALS), which has an average survival time of 3 years. Therefore, the aim of the study was to investigate experiences of and perspectives on challenges in everyday life and healthcare of people with NMDs and their relatives to gain new insights into how life-long rehabilitation can be tailored. What were the results? We found that people with NMDs must constantly adapt and adjust to changes in functioning, balancing information and knowledge needs with dependency when navigating the healthcare system. What do the results of the study mean? Health professionals should acknowledge the expertise of the individual person with a NMD and their relatives and collaborate with them on setting shared goals for the rehabilitation process. Moreover, structured, professionally facilitated peer support is needed that includes counseling and support when sharing worries and concerns about an unpredictable future. Finally, help and support should be offered regarding navigating the social and healthcare systems.

"I had no choice": A mixed-methods study on access to care for vaginal breech birth.

INTRODUCTION: Although current recommendations support vaginal breech birth as a reasonable option, access to breech birth in US hospitals is limited. This study explored the experiences of decision-making and perceptions of access to care in people who transferred out of the hospital system to pursue home breech birth. METHODS: We conducted a mixed methods study of people with a singleton, term breech fetus who transferred out of the US hospital system to pursue home breech birth. Twenty-five people completed an online demographic and psychosocial survey, and 23 (92%) participated in semi-structured interviews. We used an interpretive description approach informed by situational analysis to analyze qualitative data about participants' experiences and perceived access to care. RESULTS: Of 25 individuals who left the hospital system to pursue a home breech birth, most felt denied informed choice (64%) and threatened or coerced into cesarean (68%). The majority reported low or very low autonomy in decision-making (n = 20, 80%) and high decisional satisfaction using validated measures. Many participants felt safer in a hospital setting but were not able to access care for planned vaginal breech hospital birth, despite extensive efforts. Participants felt "backed into a corner" and "forced into homebirth," perceiving a lack of access to safe and respectful care in the hospital system. CONCLUSION: Some service users believe that home birth is their only option when they cannot access hospital-based care for vaginal breech birth. Current barriers to care for breech birth limit birthing people's autonomy and may be placing them and their infants at increased risk.