Patient-driven research priorities for patient-centered measurement.

BACKGROUND: Patient-centred measurement (PCM) emphasizes a holistic approach wherein the voices of patients are reflected in the standardized use of patient-reported outcome and experience measures and are represented throughout the continuum of measurement activities. Given the challenges of routinely integrating patient self-reports into clinical care decisions, the perspectives of all healthcare system stakeholders, especially patients, is necessary to advance the science of PCM. The purpose of the analysis we report on here was to identify patient-driven research priorities for advancing the science of PCM. METHODS: We analyzed data from seven focus groups that were conducted across British Columbia, Canada and that included a total of 73 patients, using qualitative inductive analysis and constant comparative methods. RESULTS: We found that the patients conveyed a desire for PCM to contribute to healthcare decisions, specifically that their individual healthcare needs and related priorities as they see them are always front and centre, guiding all healthcare interactions. The patients' commentaries highlighted intersecting priorities for research on advancing the science of PCM that would help transform care by (1) enhancing the patient-provider relationship, (2) giving voice to patients' stories, (3) addressing inclusivity, (4) ensuring psychological safety, (5) improving healthcare services and systems to better meet patient needs, and (6) bolstering healthcare system accountability. CONCLUSIONS: These priorities provide direction for future research efforts that would be positioned to make progress towards better health, better care, and better use of resources for individuals and for society.

Advanced Cancer in Young Adults (YAs): Living in a Liminal Space.

Young adults (YAs), defined as individuals between the ages of 18 and 39 years, experience unique challenges when diagnosed with advanced cancer. Using the social constructivist grounded theory approach, we aimed to develop a theoretical understanding of how YAs live day to day with their diagnosis. A sample of 25 YAs (aged 22-39 years) with advanced cancer from across Canada participated in semi-structured interviews. Findings illustrate that the YAs described day-to-day life as an oscillating experience swinging between two opposing disease outcomes: (1) hoping for a cure and (2) facing the possibility of premature death. Oscillating between these potential outcomes was characterized as living in a liminal space wherein participants were unsure how to live from one day to the next. The participants oscillated at various rates, with different factors influencing the rate of oscillation, including inconsistent and poor messaging from their oncologists or treatment team, progression or regression of their cancer, and changes in their physical functioning and mental health. These findings provide a theoretical framework for designing interventions to help YAs adapt to their circumstance.

Health and healthcare equity within the Canadian cancer care sector: a rapid scoping review.

BACKGROUND: Despite a publicly-funded healthcare system, alarming cancer-related health and healthcare inequities persist in Canada. However, it remains unclear how equity is being understood and taken up within the Canadian cancer context. Our objective was to identify how health and healthcare equity are being discussed as goals or aims within the cancer care sector in Canada. METHODS: A rapid scoping review was conducted; five biomedical databases, 30 multidisciplinary websites, and Google were searched. We included English-language documents published between 2008 and 2021 that discussed health or healthcare equity in the Canadian cancer context. RESULTS: Of 3860 identified documents, 83 were included for full-text analysis. The prevalence of published and grey equity-oriented literature has increased over time (2008-2014 [n = 20]; 2015-2021 [n = 62]). Only 25% of documents (n = 21) included a definition of health equity. Concepts such as inequity, inequality and disparity were frequently used interchangeably, resulting in conceptual muddling. Only 43% of documents (n = 36) included an explicit health equity goal. Although a suite of actions were described across the cancer control continuum to address equity goals, most were framed as recommendations rather than direct interventions. CONCLUSION: Health and healthcare equity is a growing priority in the cancer care sector; however, conceptual clarity is needed to guide the development of robust equity goals, and the development of sustainable, measurable actions that redress inequities across the cancer control continuum. If we are to advance health and healthcare equity in the cancer care sector, a coordinated and integrated approach will be required to enact transformative and meaningful change.

Health-related expectations of the chronically critically ill: a multi-perspective qualitative study.

BACKGROUND: Those who survive critical illness only to become chronically critically ill (CCI) experience a high symptom burden, repeat episodes of illness exacerbation, communication barriers, and poor health outcomes. Yet, it is unclear how CCI individuals and their family understand their health and the importance of prognostic information following hospitalization. The research purpose was to examine expectations about health and disease prognosis of CCI residents in long-term care from the perspectives of the CCI themselves and their family members, as well as to describe healthcare provider (HCP) interpretations of, and reactions to, these health-related expectations. METHODS: In this qualitative interpretive descriptive study, conducted in British Columbia, Canada, 38 semi-structured interviews were conducted (6 CCI residents, 11 family members, and 21 HCPs) and inductively analyzed using thematic and constant comparative techniques. RESULTS: There was divergence in CCI resident, family and HCP expectations about health and the importance of disease prognosis, which contributed to conflict. CCI residents and family viewed conflict with HCPs in relation to their day-to-day care needs, while HCPs viewed this as arising from the unrealistically high expectations of residents and family. The CCI residents and family focussed on the importance of maintaining hope, and the HCPs highlighted the complexity of end-of-life decisions in conjunction with the high expectations and hopes of family. CONCLUSIONS: The emotional and ongoing process of formulating health-related expectations points to the need for future research to inform the development and/or adapting of existing communication, psychosocial and health services interventions to ease the burden experienced by those who are CCI.

Sources of Distress for Residents With Chronic Critical Illness and Ventilator Dependence in Long-Term Care.

Limited understanding of the psychological challenges experienced by individuals with chronic critical illness hampers efforts to deliver quality care. We used an interpretive description approach to explore sources of distress for individuals with chronic critical illness in residential care, wherein we interviewed six residents, 11 family members, and 21 staff. Rather than discuss physical symptoms, sources of distress for residents were connected to feeling as though they were a patient receiving medical care as opposed to an individual living in their home. The tension between medical care and the unmet need for a sense of home was related to care beyond the physical being overlooked, being dependent on others but feeling neglected, frustration with limited choice and participation in decision making, and feeling sad and alone. Efforts to refine health care for individuals with chronic critical illness must foster a sense of home while ensuring individuals feel safe and supported to make decisions.

It's not an easy fix: Adherence to adjuvant endocrine therapy after breast cancer.

Adjuvant endocrine therapy (AET) is a highly efficacious treatment that significantly reduces breast cancer recurrence and mortality for women with hormone-receptor positive breast cancer. Yet, many women do not adhere to prescribed AET. The overarching aim of this research was to gain a better understanding of why a significant number of women diagnosed with breast cancer have suboptimal adherence to AET. A mixed-methods approach was used to explore the personal, social, and structural factors influencing breast cancer survivors' AET adherence, including: (1) an integrative review of patient-reported factors associated with AET adherence; and (2) interviews with breast cancer survivors prescribed AET. In this paper, we summarize and discuss the key contributions of both phases of this research, implication for clinical practice, and how we might leverage the expertise of nurses in practicing to full scope to address the complex needs of breast cancer survivors prescribed AET.

Patient-reported factors associated with adherence to adjuvant endocrine therapy after breast cancer: an integrative review.

BACKGROUND: Adjuvant endocrine therapy (AET) significantly reduces recurrence and mortality in women with breast cancer (BrCa). Despite the efficacy of AET in improving BrCa outcomes, up to 50% of women do not adhere to prescribed AET regimens. While numerous demographic and clinical predictors influence adherence and persistence, few studies have identified the patient-reported factors that influence AET adherence and persistence. PURPOSE: The aim was to examine the patient-reported personal, social, and structural factors influencing BrCa survivors' adherence and persistence with AET. METHODS: An integrative review was undertaken wherein PubMed, Medline, CINAHL, Embase, and PsycINFO databases were searched using keyword descriptors and database subject headings. Inclusion criteria included quantitative or qualitative peer-reviewed studies written in English that assessed AET adherence and/or persistence through objective measurement or self-report and included patient-reported factors found to influence adherence and/or persistence. The data extracted from eligible studies were entered into a matrix, and systematically compared and iteratively analyzed using relational autonomy as an organizing theoretical framework. RESULTS: A total of 43 manuscripts (9 qualitative and 34 quantitative) were reviewed. Several personal, social, and structural factors were identified that influenced AET adherence and persistence, including side effects, necessity beliefs, self-efficacy, the patient-healthcare provider relationship, social support, and continuity of follow-up care. CONCLUSIONS: An increasing number of studies have focused on identifying the patient-reported factors that influence AET adherence and persistence. This review highlights important personal, social, and structural factors that act as facilitators and barriers in adhering to and persisting with long-term AET. Acknowledging and addressing these factors is key to providing women with the care needed to improve suboptimal adherence and persistence.

Understanding adjuvant endocrine therapy persistence in breast Cancer survivors.

BACKGROUND: Adjuvant endocrine therapy (AET) significantly decreases the risk of breast cancer recurrence and mortality. Notwithstanding the demonstrated efficacy of AET, 31-73% of breast cancer survivors do not persist with AET. The purpose of this study was to explore breast cancer survivors' experiences and perspectives of persisting with AET and to identify the psychosocial and healthcare system factors that influence AET persistence. METHODS: Informed by interpretive descriptive methodology and relational autonomy theory, individual interviews were conducted with 22 women diagnosed with early-stage breast cancer who had been prescribed AET. These participants also completed a demographic form and a survey that assessed their perceived risk of recurrence. Interviews were analysed using inductive thematic and constant comparative analysis to iteratively compare data and develop conceptualizations of the relationships among data. Descriptive statistics were used to summarize the quantitative data. RESULTS: The personal, social, and structural factors found to influence AET persistence included AET side effects, perception of breast cancer recurrence risk, medication and necessity beliefs, social support, the patient-provider relationship, and the continuity and frequency of follow-up care. For most women, over time, the decision-making process around AET persistence became a balancing act between quality of life and quantity of life. The interplay between the personal, social, and structural factors was complex and the weight women placed on some factors over others influenced their AET persistence or non-persistence. CONCLUSION: Expanding our understanding of the factors affecting breast cancer survivors' AET persistence from their perspective is the first step in developing efficacious, patient-centered interventions aimed at improving AET persistence. In order to improve AET persistence, enhanced symptom management is required, as well as the development of supportive care strategies that acknowledge the values and beliefs held by breast cancer survivors while reinforcing the benefits of AET, and addressing women's reasons for non-persistence. Improved continuity of health care and patient-healthcare provider communication across oncology and primary care settings is also required. The development and evaluation of supportive care strategies that address the challenges associated with AET experienced by breast cancer survivors hold the potential to increase both women's quality and quantity of life.

Comparison of hypersensitivity rates to intravenous and intramuscular PEG-asparaginase in children with acute lymphoblastic leukemia: A meta-analysis and systematic review.

BACKGROUND: Pegylated-asparaginase (PEG-ASP) is a critical treatment for pediatric acute lymphoblastic leukemia (ALL) and has traditionally been delivered via intramuscular (IM) injection. In an attempt to reduce pain and anxiety, PEG-ASP has increasingly been delivered via intravenous (IV) administration. The study objective was to perform a meta-analysis and systematic review to compare and generate pooled hypersensitivity rates for IM and IV PEG-ASP. METHODS: A systematic literature search was conducted for all epidemiological studies that investigated IV and IM hypersensitivity rates for pediatric ALL. Included studies were critically appraised using the GRACE checklist. Pooled estimates and odds ratios with 95% confidence intervals (CIs) for IM and IV hypersensitivity rates were derived based on either a random or fixed effects model. RESULTS: Four studies satisfied the inclusion criteria and were of adequate quality. The random effects pooled hypersensitivity rates were 23.5% (95% CI 14.7-33.7) and 8.7% (95% CI 5.4-12.8) for IV and IM, respectively. The fixed effects pooled odds ratio after adjusting for publication bias was 2.49 (95% CI 1.62-3.83), indicating a significantly higher risk of hypersensitivity for IV over IM PEG-ASP. This risk is far more pronounced for high-risk (HR) patients compared with standard-risk (SR) patients (IV vs. IM: HR ↑35.2% and SR ↓2.9%). CONCLUSIONS: Although administering PEG-ASP through IV is preferable for patients, it poses a significantly higher risk of hypersensitivity when compared with IM administration, especially for HR patients. We recommend pediatric oncologists consider treating patients with HR pediatric ALL with IM PEG-ASP to reduce the risk of hypersensitivity.

A Cross-Sectional Cohort Study of Cerebrovascular Disease and Late Effects After Radiation Therapy for Craniopharyngioma.

BACKGROUND: The study objective was to describe radiation-induced vascular abnormalities, stroke prevalence, and stroke risk factors in survivors of childhood craniopharyngioma. PROCEDURE: Twenty survivors of childhood craniopharyngioma who received radiotherapy (RT) were included in the study. A clinical history, quality of life assessment, cognitive functioning assessment, magnetic resonance angiogram or computed tomography angiogram, fasting lipid profile, and fasting glucose or hemoglobin A1c test were obtained. RESULTS: Median age at diagnosis was 10.3 years and median age at time of study was 29.0 years. Vascular abnormalities were detected in six (32%) of 19 patients' angiograms (vascular stenosis, decreased artery size, aneurysm, cavernoma, and small vessel disease). Five (25%) of 20 patients experienced a stroke after RT. Median time since RT was 27.8 versus 9.1 years in patients with versus without vascular abnormalities (P = 0.02). A low level of high-density lipoproteiin (HDL) was present in 100% (5/5) of patients who had a post-RT stroke as compared with 13% (2/15) of patients who did not have any post-RT stroke (P = 0.02). Previous stroke had occurred in 0% (0/5) of patients receiving growth hormone (GH) replacement at the time of study, compared to 40% (6/15) of patients who were not receiving GH replacement (P = 0.09). CONCLUSIONS: Patients with craniopharyngioma treated with RT have a high prevalence of stroke and vascular abnormalities, particularly those with low HDL and longer duration of time since RT. There is a trend to suggest that continual GH replacement may reduce the risk of stroke. These patients should undergo careful monitoring and aggressive modification of stroke risk factors.

The Knowledge Exchange-Decision Support Model: application to cancer navigation programs.

PURPOSE: The Knowledge Exchange-Decision Support (KE-DS) Model provides a framework outlining essential components of knowledge generation and exchange. The purpose of this research was to illustrate how the Model makes explicit the different contextual aspects implicit in the planning and implementation of two cancer navigation programs in Canada. METHODS: The KE-DS Model guided the collection and analysis of interviews with program personnel and narrative data. A qualitative thematic analysis was conducted wherein we compared and contrasted the planning and implementation of these two navigation programs. RESULTS: The planning and implementation of these two programs was conceptualized differently and adapted to meet local contingencies. The KE-DS Model highlighted three factors that influenced program delivery. First, the structure of health services was shaped by the interaction of professionals and services operating in the region, and the existing health services influenced the program's approach to navigation. Second, while there were similarities in the professional roles and responsibilities of the navigators, these roles and responsibilities also reflected local context in their approaches to patient assessment, referral, education, coordination of services, and advocacy. Third, these two distinct approaches to navigation have responded to the needs of diverse populations being served by improving access to care. CONCLUSIONS: Evidence generated using the KE-DS Model could ensure a more robust and structured approach to the planning and implementation of future navigation programs. The Model prompts users to make explicit the different types of evidence utilized during program planning and implementation. The systematic collection of new information on program implementation using the KE-DS Model in future initiatives will contribute to an improved understanding of the science of knowledge exchange.

Truth-telling and hematopoietic stem cell transplantation: Iranian nurses' experiences.

BACKGROUND: Hematopoietic stem cell transplantation is a potential cure for a range of life-threatening diseases, but is also associated with a high mortality rate. Nurses encounter a variety of situations wherein they are faced with discussing bad news with hematopoietic stem cell transplantation patients. RESEARCH OBJECTIVE: The aim of this study was to explore the experiences and strategies used by Iranian nurses related to truth-telling and communicating bad news to hematopoietic stem cell transplantation patients. RESEARCH DESIGN: A qualitative approach using content analysis of interview data was conducted. PARTICIPANTS AND RESEARCH CONTEXT: A total of 18 nurses from the main hematopoietic stem cell transplantation center in Iran participated in semi-structured interviews. ETHICAL CONSIDERATIONS: The Institutional Review Board of the Tabriz University of Medical Sciences and the Hematology-Oncology and Stem Cell Transplantation Research Center affiliated with the Tehran University of Medical Sciences approved the study. FINDINGS: In the first main category, not talking about the disease and potential negative outcomes, the nurses described the strategies of not naming the disease, talking about the truth in indirect ways and telling gradually. In the second main category, not disclosing the sad truth, the nurses described the strategies of protecting patients from upsetting information, secrecy, denying the truth and minimizing the importance of the problem. The nurses used these strategies to minimize psychological harm, avoid patient demoralization, and improve the patient's likelihood of a fast and full recovery. DISCUSSION: The priority for Iranian hematopoietic stem cell transplantation nurses is to first do no harm and to help patients maintain hope. This reflects the Iranian healthcare environment wherein communicating the truth to hematopoietic stem cell transplantation patients is commonly considered inappropriate and avoided. CONCLUSION: Iranian nurses require education and support to engage in therapeutic, culturally appropriate communication that emphasizes effective techniques for telling the truth and breaking bad news, thereby potentially improving patient outcomes and protecting patient rights.

Composing adult lives with a ventilator at the intersection of developmental and neoliberal discourses of time.

This paper explores temporalities and experiences of time drawn from an analysis of interview data from a critical narrative inquiry of the experiences of young adults living with home mechanical ventilation (HMV). The analysis centers the ideological effects of dominant discourses that shape understandings of time in the Euro-Western world and the ways in which young adults' stories prompt a rethinking of time in health research and praxis. Data generation involved interviews and photo-elicitation with five young adults (ages 18-40). A critical narrative analysis of participants' stories surfaced the influence of ableist, developmentalist, and neoliberal discourses of time and the creative resistance that points to the potential of crip orientations to time in opening up possibilities for living. Implications for practice and research are offered.

The use of Arts-Based Research in Chronic Pain: A Scoping Review.

Background: As an emerging approach, arts-based research holds potential to advance understanding of the complex and multidimensional experiences of chronic pain and means of communicating this experiential evidence. This scoping review aimed to map and explore the extent of arts-based research in chronic non-cancer pain, understand the rationale behind using arts-based research methods, and identify directions for future research. Methods: Databases PsycINFO, MEDLINE, EMBASE, and CINAHL were searched for eligible English-language articles from inception to November 2022. Out of 1321 article titles and abstracts screened for eligibility, 18 articles underwent full-text screening, with 14 ultimately meeting all inclusion criteria. We conducted a narrative synthesis of data extracted from the 14 reviewed articles. Results: The review articles focused on a wide range of chronic non-cancer pain conditions, with 12/14 employing qualitative methods (86%), one repeated measures experimental design, and another a multiphase, multimethod design. Seven articles described the use of drawing, painting, or mixed-media artwork; four used photography; two used body mapping; and one used e-book creation. The rationale for arts-based research included exploring and better understanding patients' experiences with chronic non-cancer pain, constructing an intervention, and investigating or validating a clinical tool. Nine articles reported that their arts-based research methods produced unintended therapeutic benefits for participants. Recommendations for future research included using arts-based research to better understand and communicate with patients and providers, exploring convergence with art therapy, and designing creative and flexible multiphased studies involving collaboration across disciplines. Conclusions: Despite the wide variation in sample and art modalities across reviewed articles, arts-based methods were considered suitable and highly effective for investigating chronic non-cancer pain.

Contexte: La neuromodulation par radiofréquence pulsée (NRFP) du nerf grand occipital (NGO) est envisagée chez les patients souffrant de céphalées qui ne parviennent pas à obtenir un bénéfice analgésique durable à partir des blocages nerveux à l'aide d'un anesthésique local et de stéroïdes. Cependant, les données probantes à l'appui de cette pratique ne sont pas claires.Objectifs: Cette revue systématique narrative vise à explorer l'efficacité et la sécurité de la NRFP du NGO sur les maux de tête.Méthodes: Des bases de données ont été consultées pour trouver des études, publiées jusqu'au 1er février 2024, portant sur la NRFP du NGO chez des adultes souffrant de céphalées. Les résumés et les affiches ont été exclus. Le critère principal était le changement dans l'intensité des maux de tête. Les critères secondaires comprenaient l'effet sur la fréquence mensuelle des céphalées, la santé mentale et physique, l'humeur, le sommeil, la consommation d'analgésiques et les effets secondaires. Deux examinateurs ont évalué et extrait les données.Résultats: Vingt-deux articles (2 essais contrôlés randomisés, 11 cohortes et 9 rapports de cas/séries) portant sur 608 patients ont été recensés. Une hétérogénéité considérable a été observée en termes de devis de l'étude, de diagnostic des céphalées, de la cible et des paramètres de la FRP et de l'orientation de l'image. Les réglages de la NRFP variaient (38-42°C, 40-60 V, et 150-400 Ohms). Les études ont démontré que la NRFP procurait une analgésie significative et réduisait la fréquence des céphalées dans la migraine chronique de trois à six mois, et un soulagement significatif de la douleur pour la névralgie occipitale pendant six à dix mois. Des effets indésirables légers ont été signalés dans 3,1 % des participants de la cohorte. Une minorité d'études ont fait état de résultats secondaires. La qualité des données probantes était faible.Conclusion: Les données probantes de faible qualité indiquent un bénéfice analgésique de la NRFP du NGO pour la névralgie occipitale et la migraine chronique, mais son rôle pour d'autres types de céphalées doit être davantage étudié. La cible et les paramètres optimaux de la NRFP restent floues. Des essais contrôlés randomisés de haute qualité sont nécessaires pour explorer davantage le rôle de cette intervention.

Women's Self-Management of Dyspareunia Associated With Endometriosis: A Qualitative Study.

Given the limitations of medical treatment for endometriosis, self-management is a critical component of symptom management, and providing patients with information and education is a necessary complement to medical interventions. Though 50 to 70% of people with endometriosis experience dyspareunia (painful sex), there is limited knowledge of self-management specific to painful sex. A comprehensive understanding of the self-management strategies used is foundational to developing supportive care interventions that help ease pain and related psychosocial sequelae. The objective was to describe people's experiences of navigating endometriosis-associated painful sex and developing self-management strategies. We analyzed interview data from 20 women using constant comparative and thematic analysis techniques, guided by qualitative interpretive description methodology. Participants (age range 18-44 years) all identified as women and were predominately Caucasian (90%) and heterosexual (80%). Throughout their lives, the women appeared to gradually develop self-management strategies while navigating painful sexual experiences. This complex journey encompassed four phases: 1) viewing painful sex as normal, 2) experiencing evolving thoughts and emotions, 3) coming to understand painful sex and seeking help, and 4) learning strategies to navigate painful sex, these include preparing mentally and physically for sex and communicating with intimate partner(s). Women in this study developed self-management strategies over time through engagement with others who understood their challenges. Future research is warranted regarding initiatives to counter the normalization of painful sex, develop and disseminate patient-facing information, provide education specific to dyspareunia, improve access to multidisciplinary care, facilitate social connections and support, and enhance communication with intimate partners. PERSPECTIVE: In this paper, we report on the experiences of women with endometriosis-associated painful sex and their self-management strategies. Clinicians may be interested in a qualitative exploration of endometriosis-associated painful sex as they seek to further understand their patient's experiences and what strategies can be implemented to alleviate dyspareunia. DATA AVAILABILITY: The data sets generated during and/or analyzed during the current study are not publicly available as participants did not consent to making their data publicly available but are available from the corresponding author on reasonable request.

The quality, suitability, and readability of web-based resources on endometriosis-associated dyspareunia: A systematic review.

People commonly and increasingly rely on the internet to search for health information, including those related to endometriosis-associated dyspareunia. Yet the content of such websites may be of variable accuracy and quality. This review aims to evaluate the quality, readability, and suitability of web-based resources on endometriosis-associated dyspareunia for patients. We searched 3 databases - Google, Bing, and Yahoo - to identify websites related to endometriosis-associated dyspareunia. Two independent reviewers screened the search results against inclusion and exclusion criteria. Another set of two reviewers evaluated the selected websites using validated measurement instruments. Out of 450 websites, 21 met the inclusion criteria and were evaluated. More than half of the websites had information on content updates, reported on authorship, or disclosed sponsorship information. The mean quality and suitability scores were 47.5 (SD = 13.3) and 65.2 (SD = 13.6) respectively, thus suggesting generally adequate quality and suitability levels. However, the mean readability scores exceeded the recommended level for health-related websites. The poor readability of the websites might limit accessibility for a significant proportion of patients with low educational levels. The findings of this review have implications for designing high-quality, readable and up-to-date web interventions for people who rely on web platforms as an alternative or complementary source of health information on dyspareunia.

Defining destigmatizing design guidelines for use in sexual health-related digital technologies: A Delphi study.

OBJECTIVE: Stigma has been recognized as a significant issue in sexual health, yet no specific guidelines exist to support digital health development teams in creating stigma-alleviating sexual health digital platforms. The purpose of this study was to develop a set of design guidelines that would serve as a reference point for addressing stigma during the design of sexual health-related digital platforms. MATERIALS AND METHODS: We conducted a 3-round Delphi study among 14 researchers in stigma and sexual health. A preliminary list of 28 design guidelines was generated from a literature review. Participants appraised and critiqued the clarity and usefulness of the preliminary list and provided comments for each item and for the overall group of items at each round. At each round, a content validity index and an interquartile range were calculated to determine the level of consensus regarding the clarity and usefulness of each guideline. Items were retained if there was high consensus or were dropped if there was no consensus after the three rounds. RESULTS: Nineteen design guidelines achieved consensus. Most of them were content-related guidelines and sought to address the emotional concerns of patients that could potentially aggravate stigma. The findings also reflected modern stigma management strategies of making stigma a societal attribute by challenging, exposing, and normalizing stigma attributes via web platforms. CONCLUSION: To address stigma via digital platforms, developers should not just concentrate on technical solutions but seriously consider content-related and emotional design components that are likely to result in stigma.

When chronic critical illness is a family affair: A multi-perspective qualitative study of family involvement in long-term care.

OBJECTIVE: Those with chronic critical illness (CCI) remain dependent on life-sustaining treatments and increasingly reside in long-term care facilities equipped to meet their needs. The nature of family involvement in care remains undetermined thwarting approaches to mitigate poor family outcomes. The research objective was to explicate family involvement in the care of an individual with CCI who resides in long-term care. METHODS: In this qualitative research, we used thematic analysis and constant comparative techniques to analyze data from interviews with 38 participants: 11 family members, 6 residents with CCI, and 21 healthcare providers. RESULTS: Involvement in care entailed family: (1) reorienting their life despite the stress and emotional toll; (2) assuming responsibility for meaningful activities and management of practical matters, yet struggling alone; (3) advocating for care by being present, reminding and pushing, and picking their battles; and (4) figuring out how to contribute to nursing care, but with unclear expectations. DISCUSSION: The burden of family caregiving was substantial, contrasting the assumption that family are relieved of their caregiver responsibilities when the patient with CCI is in a care facility. Research to address unmet family needs specific to their roles and responsibilities could potentially improve family outcomes and is warranted.