Family Priorities Research Articles

DIPG-02. Role of a Bevacizumab-based regime in the treatment of children with diffuse intrinsic pontine glioma (DIPG): a systematic review

BACKGROUND: Diffuse intrinsic pontine glioma (DIPG) is an aggressive paediatric brainstem tumour. There are no effective treatments and median survival is 11.2 months, therefore maintaining quality of life (QOL) is a priority for many families. Bevacizumab, an anti-VEGF IgG antibody, has the potential to improve QOL and survival in DIPG, but has never been evaluated systematically. AIM: To collate the evidence and assess the role of this drug, in the treatment of DIPG. METHODS: MEDLINE, EMBASE, Scopus and Web of Science were searched for relevant studies using terms developed from PICO criteria, including alternatives for Bevacizumab and DIPG. One reviewer screened titles and abstracts, then two reviewers screened full texts. Data were extracted into tables and study quality assessed using MINORS and JBI tools. RESULTS: Searching revealed 1,001 papers; after deduplication 851 remained. After screening of titles and abstracts, 28 full texts were screened, resulting in the inclusion of 11 studies. All studies evaluated more than one outcome. Four studies reported a median overall survival longer than historical data, however, two determined no significant impact. Five studies reported a radiological response in a proportion of participants and two reported no response. Three studies evaluating clinical response, reported improvement in a proportion of patients. Three studies evaluating QOL reported stability or improvement. Four studies evaluating steroid use reported reductions in the proportion of patients receiving steroids. In the treatment of radiation necrosis, Bevacizumab led to clinical improvement in 6/12 patients in 2 studies and permitted a reduction in steroid use in the majority of patients. CONCLUSION: Insufficient evidence means the role of Bevacizumab in the treatment of DIPG is unclear. However, Bevacizumab may be beneficial to some patients. The review highlights the need for further research in this area, particularly randomised controlled trials. More effective therapies are desperately needed.

It Is All I Know.

It Is All I Know.

Paternity Leave During Surgical Training: Perspectives of Male Residents

Recent literature on parental leave during residency has focused on the importance of supporting new mothers, but the needs and challenges faced by expectant nonchildbearing residents are less well described. Male residents are more likely than their female counterparts to have children during surgical training, and they experience similar stressors including childcare and conflicts between work and home priorities. As nonchildbearing parents of this generation become more involved in childrearing, the need to establish inclusive parental leave policies is essential. The aim of this study was to provide a deeper understanding of the perspectives of male residents about parental leave. A semi-structured interview guide was developed using a literature search and an expert panel. Interviews were audio-recorded and transcribed verbatim and emergent themes were identified using content analysis. Four academic institutions. Four focus groups were held with of a total of 15 male resident-parents. These were selected using convenience sampling. Multiple themes emerged: 1) male residents perceive greater stigma attached to taking leave compared to female colleagues; 2) paternity leave policies are vague and sometimes non-existent; 3) male residents experience a high burden of guilt related to burdening peers with clinical coverage while on leave; 4) male residents face internal conflict between surgical and parental responsibilities; 5) male residents have little mentorship on successful work-life integration and feel compelled to model the behavior of their attendings who often prioritize career before family; and 6) shifts in family values and priorities are common following childbirth and impact how male resident-parents view other new parents in training. Significant challenges exist for residents who become fathers during their surgical training. Key stressors include poorly defined leave policies, historic paradigms of prioritizing professional duties before personal duties, stigma against taking time off for parental bonding in the absence of medical need, and guilt related to extra work imposed on colleagues by time away. Establishment of formal parental leave policies for both genders, programmatic support to offset the increased workload on colleagues, and greater mentorship on balancing family and career are needed to foster a culture of work-life integration.

Proximal Femoral Focal Deficiency/Congenital Femoral Deficiency: Evaluation and Management.

Proximal focal femoral deficiency is a congenital transverse deficiency in which the femur is globally smaller with a typical proximal deformity at the hip that may include distal involvement of knees, leg, and feet. Congenital femoral deficiency (CFD) describes a broader spectrum of longitudinal deficiency inclusive of proximal focal femoral deficiency. CFD may also include lateral distal femoral hypoplasia, knee cruciate ligament deficiency, rotational instability, patellar dislocation, fibular hemimelia, ray absence, and contralateral limb involvement. Treatment intends to maximize function by limb equalization and deformity correction ranging from nonsurgical management using prosthetics to amputation and may include lengthening, shortening, and complex limb reconstruction. Management decisions depend on overall severity and the patient and family's preferences and priorities. Owing to its complexity, CFD is best treated by clinicians with considerable deformity treatment experience who can help guide decision making and embark on a treatment course that will maximize the functional outcome.

Family carers' experiences of dysphagia after a stroke: An exploratory study of spouses living in a large metropolitan city.

People with post-stroke dysphagia often require informal care from family to facilitate safe swallowing, modify food/drink or administer tube-feeds. Previous survey studies have found dysphagia may increase family caregiver burden. However, the experiences of family members in this population have not been fully explored. To explore family members' experiences of living with a spouse with post-stroke dysphagia. This exploratory qualitative study used one-to-one semi-structured interviews to explore family members' experiences. They were asked open questions about previous eating routines, dysphagia onset, their role and future hopes. Interviews were audio-recorded, transcribed and analysed thematically with an inductive approach to determine key features of family members' experiences. Five spouses aged 70-93 years participated. Their relatives' strokes happened 3 months to 3 years before the interview. Five themes were identified: 'I do all of it'; making sense of dysphagia; emotional responses; reflecting on relationships; and redefining lifestyle. It is important to consider family members' perspectives as they often provide vital care to loved-ones with dysphagia. In relation to eating and drinking, maintaining elements of previous routines seems important to families. Healthcare professionals should consider these when making recommendations for rehabilitation. Family members have differing perspectives of the comparative impact of dysphagia; patient and family priorities should be explored for healthcare professionals to provide better-targeted support. What is already known on the subject Informal caregivers, often spouses, play a vital role in supporting the health and well-being of older people with health conditions. The presence of post-stroke dysphagia may present increased challenges for the informal caregiver. There are limited studies qualitatively exploring the experiences of informal caregivers in this population. What this paper adds to existing knowledge Current health and social care provision for this population leaves informal caregivers feeling they have been left to manage dysphagia alone. Informal caregivers demonstrate a breadth of knowledge about their spouse's dysphagia, problem-solving effective solutions. Informal caregivers have a range of interpretations of the nature and cause of dysphagia; leading to miscommunication with health professionals and complex emotional responses. What are the potential or actual clinical implications of this work? Healthcare professionals might consider ways in which to support dysphagic patients' families later in their care pathway, through scheduling reviews or running dysphagia patient and family groups. Health and social care professionals and policymakers should learn from informal caregivers' expertise to promote better health and quality-of-life outcomes for the patient and caregiver. Equal, open conversations between health and social care professionals and patients/families on their understanding of dysphagia may help informal caregivers to better voice their concerns and support mutual understanding. This has implications for adherence to recommendations, psychological well-being and patient safety.

Managing Family Building Concerns After Cancer

Background: Young adult breast cancer survivors (YABCS) and their partners commonly experience distress related to changes in their family building options. Objective: To explore how YABCS and their partners appraised and managed family building after cancer to inform approaches to support these couples. Methods: We conducted separate telephone interviews with 25 YABCS and their male partners. We used thematic analysis to examine individual interviews followed by analysis of responses within and across couples. Results: Themes were: (1) Purposeful discussion about family building plans with each other; (2) Balancing family building desires and priorities that do not always align; (3) Partners providing emotional and instrumental support for survivors; (4) Working toward finding a solution together; (5) Perception of limited choice; (6) Combination of time in life and cancer circumstance; (7) Access to financial resources and fertility care; and (8) Motherhood self-identity, social expectations, and assumptions. Conclusions: Open communication facilitated shared appraisal and management of family building plans, which were influenced by both the cancer experience and stage of life. Participants emphasized a lack of choice and autonomy, describing ways that structural factors and social expectations around biological motherhood disrupted family building plans. Implications for Practice: YABCS couples navigating family building would benefit from counseling focused on communication and consideration of each partner’s priorities based on circumstances, social expectations, and access to resources. What Is Foundational: Interpersonal, contextual, and structural factors are important considerations when developing strategies to comprehensively support couples navigating the complexities of family building after cancer.

Identification of research priorities in CHD: empowering patients and families through participation in the development of formal research agendas.

Conquering CHD, formerly known as the Pediatric Congenital Heart Association (PCHA), is the leading congenital heart disease (CHD) patient advocacy organisation in the United States of America, and places high priority on patient engagement in the research process. Participatory design is an approach to problem-solving that utilises the knowledge and opinions of groups of people to generate plans and new ideas. Utilising this mode of patient engagement, patients and families engaged with Conquering CHD assisted in developing a list of research priorities which was then distributed to the larger membership with instructions to rank the priorities in order of importance. Upon completion, these items were compared to the current scientific literature to assess correlation with current publications. This cross-sectional study and literature review aimed to assess the priorities of patients and families in CHD research and to determine the reflection of these areas in the current body of scientific literature. This cross-sectional study utilised a survey asking participants to rank the importance of research items within categories including "Technology Advances," "Genetic and Cellular Research," "Broad Understanding of CHD," and "Psychosocial Outcomes" which was distributed through social media and email to 43,168 accounts across all platforms. Respondents were asked to place each item in a ranked order in each category, with the value "1" representing the most preferred for each participant. Anyone engaged with Conquering CHD was eligible to complete the study, including patients and families. Subsequently, a literature review of the largest medical databases including PubMed, Scopus, and ScienceDirect was undertaken to determine the number of articles published per each topic which was then assessed to determine if there is a correlation between patient-ranked priorities and the current body of literature. The study generated a total response of 527 participants. Regarding "Technology Advances," valve replacement was the preferred topic (mean rank 2.07, IQR 2). Stem cell research was the favoured topic in "Genetic and Cellular Research" (mean rank 2.53, IQR 2). Access to care was the priority in the "Broadening Understanding of CHD" (mean rank 1.24, IQR 1). Pertaining to "Psychosocial Outcomes", psychological/emotional effects was the highest ranked topic (mean rank 1.46, IQR 1). The literature review returned a total of 135,672 articles in the areas of interest. For "Valve Replacement", 8361 articles resulted reflecting a proportion of 0.097 of total articles. For "Stem Cell Research", 9921 articles resulted reflecting a proportion of 0.115 of total articles. For "Access to Care", 7845 articles resulted reflecting a proportion of 0.091 of total articles. For "Psychological/Emotional Effects", 6422 articles resulted reflecting a proportion of 0.074 of total articles. A Spearman's correlation demonstrated no correlation between the preferred domain of CHD research and the number of articles published for that domain (rs = 0.02, p = 0.94). This process demonstrates the effectiveness of participatory design, using a patient and family network to determine the research items of concern to those affected by CHD. The cross-sectional survey was effective in assessing patient and family priorities but was limited by access to reliable internet and delivery only in English. Though the study had a large response rate, it was limited to patients already engaged with Conquering CHD. For these reasons, it may not completely reflect the opinions of the total population affected by CHD. However, this offers valuable insight into patient-determined priorities and reveals that the current scientific literature does not correlate with these items. These data serve to inform individual and institutional research agendas to better reflect the needs and desires of this population.

Exploring parental perceptions of psychosocial screening in paediatric emergency departments.

Objective: To explore parental perceptions of psychosocial screening in the paediatric emergency department and identify post-screening barriers to accessing mental health care. Methods: We conducted a qualitative study during the 30-day follow-up period of a larger prospective cohort study. Eligible youth and their accompanying parent/guardian first completed psychosocial self/proxy-screening using the MyHEARTSMAP tool and then received a standardized clinical mental health assessment. If the MyHEARTSMAP assessment provided youth with mental health resources recommendations, their parents were invited to a follow-up session. Thirty days (±5 days) after their ED visit, parents participated in a virtual interview to reflect and share their attitudes, perceptions and thoughts around the screening and mental health care-seeking process. Results: Of the 171 participants who received resource recommendations during their ED visit, 124 parents (72.5%; 95% CI 65.2–79.1%) completed the follow-up interview. Most parents endorsed positive perceptions of the screening process, describing it as an ‘eye-opening’ process that ‘sparked conversation’. Most participants (74.2%; 95% CI 65.6–81.6) agreed with the resource recommendations they received. In terms of resources-seeking, only 41 participants (33.1%; 95% CI 24.9–42.1) attempted to access recommended supports. Families generally felt identified concerns were mild and ‘not serious enough’ to warrant resource-seeking, though many expressed an intention to seek care if concerns escalated. Conclusion: Perceptions of psychosocial screening in the ED were favourable and encouraging among participating parents of youth screened positive for psychosocial issues. Despite positive attitudes, only a fraction of the families invited to follow-up attempted to access care. Mental health may be perceived as low priority for many families, signifying the need for improved education and awareness building on the importance of early intervention.

Comparison of Intensive Care Unit Nurses’ and Family Members’ Priorities of Patient and Family-centered Care in Ghana

Purpose : Life-threatening illnesses represent a crisis for individual patients and their families. Little has been made to understand the priorities or perspectives in developing a care plan. This results in poor outcomes, and patients and families return home without being satisfied with the care provided. This study aimed to address nurses’ and families’ care priorities on patient and family-centered care principles and compare those priorities.Methods : A quantitative comparative descriptive research was conducted. The data were part of a study that was carried out to elicit and compare nurses’ and families’ perceptions of complying with patient and family-centered care (PFCC) principles in intensive care units (ICU) in Ghana. The respondents were ICU nurses (n=123) and family members of hospitalized patients in the ICU (n=111). The tool for the study was a “modernized version of a hospital self-assessment inventory on PFCC,” and data analyses were performed using SPSS version 20.0.Results : Nurses and families differed significantly in their priorities of care based on the principles of PFCC. The means and <i>p</i>-values were significantly different for the definition, pattern of care and access to information/education, and the overall total scores of the patient and family-centered care principles (PFCCP)Conclusion : To render care that aligns with the care priority of families and patients in the ICU, nurses must plan care in consultation with their families.

Designing a Mobile Health Solution to Facilitate the Transition from NICU to Home: A Qualitative Study.

There is limited information about caregiver and provider perspectives regarding the design of a mobile health solution to facilitate the transition from the neonatal intensive care unit (NICU) to home. Focus groups were conducted with English- or Spanish-speaking families enrolled in an urban high-risk infant follow-up clinic and with their care providers. We generated salient themes using an inductive thematic analysis. Twenty-two participants completed the study. Among caregivers, the infant’s median gestational age (IQR) was 29 (23, 34) weeks and 63% were Hispanic. Among the providers, 55% had practiced for more than 10 years and 18% were bilingual. Key stakeholder (family and provider) priorities for designing a mobile health solution were organized into eight domains, i.e., implementation ideas around user interface and timing, providing path planning and information, increasing support, improving engagement with providers and services, mitigating barriers to care after discharge and strengthening parenting role and confidence. The results from this study suggest that families and healthcare providers prioritize path planning, information and support as the pillars for designing an effective NICU-to-home transition mobile health application. Implications for product development include family empowerment, being a credible source of information and creating a resource for caregiver support and mental health.

School-Age Children's Wellbeing and School-Related Needs During the COVID-19 Pandemic.

Background and ObjectivesThe COVID-19 pandemic and related school closures may have disrupted school-related supports and services important to children's wellbeing. However, we lack national data about US children's wellbeing and family priorities for school-related services. We sought to determine 1) children's social-emotional wellbeing and 2) needs and priorities for school-based services in the 2021–2022 school year among a US sample of parents of school-aged children.MethodsIn June 2021, we surveyed 1504 parents of children enrolling in grades K-12 in the 2021–2022 school year participating in the Understanding America Study, a nationally representative probability-based Internet panel of families completing regular internet-based surveys (Response rate to this survey was 79.2%). Parents completed the Strengths and Difficulties Questionnaire and reported their needs for school-related services regarding “support getting healthcare”, “mental wellness support”, “food, housing, legal or transportation support”, and “learning supports and enrichment.” Weighted regressions examined associations among wellbeing, needs, and sociodemographic characteristics.ResultsApproximately one-quarter of children had deficits in hyperactivity (26.1%), one-third in peer problems (32.6%), and 40% in prosocial areas. Most parents (83.5%) reported a school-related need, with 77% reporting learning supports and enrichment needs and 57% reporting mental wellness needs. The highest priority needs were for tutoring, socialization, increased instructional time, coping with stress, and physical activity.ConclusionsUS school children have high social-emotional and school-related needs. Investments in schools are urgently needed, particularly for learning supports and mental wellness, to meet the high demand for services and parents’ priorities to support child health and wellbeing.

LIFELONG LEARNING PROGRAMMES FOR SENIORS AT THE OPEN CARE CENTRES FOR THE ELDERLY (KAPI) IN SYROS, GREECE: PREDISPOSITION, EXPECTATIONS, MOTIVATION, LEARNING ENVIRONMENT. THE DECISIVE ROLE OF CULTURE

The main goal of this survey is to explore lifelong learning in the third age in the island community of Syros in the hope that the findings will provide data that may be useful in creating educational programme structures. Lifelong learning taking place with a group of senior citizens at the KAPI in the Municipality of Syros-Ermoupoli will be explored, along with the potential of implementing comprehensive active learning programmes specific to the third age. The topics examined include the idiosyncrasy of the KAPI members, their needs for active ageing, their expectations and motivations, the objects of knowledge they seek and the limitations they set. The principal findings showed that Syros is a fertile field for creating pilot structures for informal education in the third age. The members of the Syros KAPI hope to see such programmes launch with less reticence than expected, but on condition that the present hierarchy of family and social priorities is not radically upset. The elderly are open to the idea of participating in learning programmes, they select specific objects of knowledge and desire to channel the skills they acquire to the local community, which is open to volunteerism. It is noteworthy that in relation to the open-ended questions regarding learning objects, the KAPI members took the initiative to propose cultural education programmes as part of their training. They also believe that the non-formal learning will improve their social image and health and will allow them to become more functional members of the local community.<p> </p><p><strong> Article visualizations:</strong></p><p><img src="/-counters-/edu_01/0979/a.php" alt="Hit counter" /></p>

Understanding Resident, Family, and Staff Safety Priorities to Guide Development of an Engagement Toolkit

Resident and family engagement (the desire, ability, and activation as a partner in care) is a necessary component of keeping assisted living (AL) residents safe. Barriers to engagement include differing priorities between the resident/family and staff. This presentation outlines the results of a content analysis of qualitative interviews with 105 AL staff, residents, and family members, in which we examined AL stakeholder priorities for safety. Qualitative interviews were analyzed to first identify safety priorities by stakeholder type (staff, resident, and families), and then compared across stakeholder group. Stakeholder-specific safety priorities were identified, including infection management (COVID-19 and others), medications errors, falls, elopement, lack of AL resources/staffing, conflict, adverse events, nutrition, physical hazards, building security, chemical agents, fire/natural disasters, and abuse/neglect – the importance of these priorities vary by stakeholder type. Presentation discussion will include implications for future intervention to address the top safety problems in AL.

A qualitative exploration of the priorities and experiences of children with Duchenne muscular dystrophy, their parents, and healthcare professionals around weight management

Purpose The quality and length of life for boys with Duchenne muscular dystrophy (DMD) has improved due to medical advancements, but obesity has emerged as and may pose a risk to their physical health. Clinical guidelines recommend attention to weight management, but healthcare professionals (HCPs) find implementing them in clinical care challenging. Little information is available about the perspectives of children with DMD and their families around weight management. This study explored the key priorities of children with DMD, their parents, and HCPs who treat them, around weight management. Methods Qualitative, individual, semi-structured interviews were conducted and analyzed using a qualitative descriptive approach. Results Participants included parents of children with DMD (n = 13), children with DMD (n = 10), and HCPs (n = 14). Theme one: “Competing priorities between healthcare providers, parents, and boys” contained two sub-themes: (i) Body mechanics and function; and (ii) Psychosocial well-being. Theme two: “The realities of living with Duchenne’s Muscular Dystrophy,” with subthemes: (i) Striving for normality; (ii) The trajectory of DMD; (iii) The labour associated with DMD. Conclusion HCPs, parents, and boys have diverging worldviews around weight management, highlighting the importance of integrating the priorities of families into care, even when not aligned with guideline recommendations. IMPLICATIONS FOR REHABILITATION HCPs must understand the competing priorities in the lives of children with DMD and their families when discussing weight, weight management, and lifestyle changes. Quality of life and living a “normal” life are prioritized by children and families over the surveillance and time demands of lifestyle routines recommended by clinicians for weight management. Weight management recommendations should be based upon the individual needs and priorities of the family.

Права человека в контексте взаимодействия азиатских и европейских правовых ценностей

This article substantiates the need to consolidate human rights through various international legal mechanisms, including regional conventions on human rights that reflect specific legal and cultural values. The authors analyzed the Oriental legal values that differ from those in the Occidental. Borrowed elements of foreign culture and standard legal norms do not provide effective implementation of international documents at the national level. In fact, a lot of contemporary conflicts originate in the gap between the official legal ideology and the traditional legal consciousness, which is typical of most Asian countries. The interdisciplinary and civilizational (sociocultural) approaches revealed that most Shanghai Cooperation Organization countries adhere to the so-called Asian values, e.g. collectivism; priority of family, clan, and nation interests; idealization of the authorities; detachment from active political and legal life, adherence to moral norms, etc. The authors believe that, along with the Universal Declaration of Human Rights, there may be regional concepts and international regional acts based on civilizational identity, historical memory and experience. Eurasian countries need a new concept of human rights, which will combine universal and Asian legal values, e.g. priority of the community and state over the individual; the advantage of public order over the personal rights and freedoms; common wellbeing; significance of moral and religious rules; admiration for strong political leaders, etc. This concept will make it possible to integrate Asian mentality, lore, and national philosophy into standard human rights. The concept might help to resolve various conflicts that occur between global legal ideology and traditional legal mentality of most Asian societies.

A qualitative analysis of autonomy‐supportive parenting in families experiencing homelessness

AbstractObjectiveThis exploratory qualitative study examined whether parents of young children residing in emergency housing endorse autonomy‐supportive parenting values.BackgroundYoung children experiencing homelessness are at increased risk for self‐regulation difficulties, but one possible way to support self‐regulation development during a window of plasticity in the preschool period is through autonomy‐supportive parenting. Autonomy support has been shown to uniquely predict early self‐regulation skills. However, there is also evidence to suggest that autonomy support could be problematic in risky environments.MethodTwenty‐one parents of 3‐ to 6‐year‐old children participated in a brief interview about parenting and self‐regulation development. Guided by self‐determination theory, the interviews were subsequently coded for themes related to autonomy support.ResultsParents endorsed ideas consistent with autonomy support, such as recognizing children's capabilities and listening to children's ideas. However, parents also viewed some behaviors, such as offering young children choices, to be less acceptable.ConclusionFindings suggest that parents experiencing homelessness may provide autonomy support in different ways than parents in more stable living conditions or from higher socioeconomic backgrounds.ImplicationsParenting interventions that aim to promote early self‐regulation development through autonomy‐supportive practices might consider tailoring intervention components to align with the socialization priorities of families experiencing homelessness.

Sleep, Pain, and Cognition: Modifiable Targets for Optimal Perioperative Brain Health

The prevention of perioperative neurocognitive disorders is a priority for patients, families, clinicians, and researchers. Given the multiple risk factors present throughout the perioperative period, a multicomponent preventative approach may be most effective. The objectives of this narrative review are to highlight the importance of sleep, pain, and cognition on the risk of perioperative neurocognitive disorders and to discuss the evidence behind interventions targeting these modifiable risk factors. Sleep disruption is associated with postoperative delirium, but the benefit of sleep-related interventions is uncertain. Pain is a risk factor for postoperative delirium, but its impact on other postoperative neurocognitive disorders is unknown. Multimodal analgesia and opioid avoidance are emerging as best practices, but data supporting their efficacy to prevent delirium are limited. Poor preoperative cognitive function is a strong predictor of postoperative neurocognitive disorder, and work is ongoing to determine whether it can be modified to prevent perioperative neurocognitive disorders.

Quali-quantitative synthesis of the global scenario of patent families about leprosy.

The work presents the analysis and synthesis of patent families about leprosy worldwide in the last 20 years. Three technological aspects were defined for the study of both portfolios, thus defined: diagnostic, drug/treatment and vaccine. Three thousand and three hundred twenty-three (3323) patent families were identified (790 for diagnostic, 1515 for drug and 1018 for vaccine). Fifty-eight (58) patent holders were identified and analyzed, with the most expressive portfolio of patent families, distributed in 13 countries. For the recovery of patent families, the ORBIT Intelligence® system from QUESTEL® was used. Using quantitative and qualitative analysis and synthesis, the patterns of five strategic indicators on the global patent scenario about leprosy were observed, namely: holders of patent families; the years of filing for unionist priority for patent families; countries of unionist priority for patent families; the legal status of filed patent families; and the legal status of patent families by country of protection. It is suggested that new public policies be created to encourage synergy between patent families and the social determinants of neglected populations, in order to induce a safe path to technological independence and better performance in the fight against leprosy in the Brazil.

Preferences and priorities to manage clinical uncertainty for older people with frailty and multimorbidity: a discrete choice experiment and stakeholder consultations

BackgroundClinical uncertainty is inherent for people with frailty and multimorbidity. Depleted physiological reserves increase vulnerability to a decline in health and adverse outcomes from a stressor event. Evidence-based tools can improve care processes and outcomes, but little is known about priorities to deliver care for older people with frailty and multimorbidity. This study aimed to explore the preferences and priorities for patients, family carers and healthcare practitioners to enhance care processes of comprehensive assessment, communication and continuity of care in managing clinical uncertainty using evidence-based tools.MethodsA parallel mixed method observational study in four inpatient intermediate care units (community hospitals) for patients in transition between hospital and home. We used a discrete choice experiment (DCE) to examine patient and family preferences and priorities on the attributes of enhanced services; and stakeholder consultations with practitioners to discuss and generate recommendations on using tools to augment care processes. Data analysis used logit modelling in the DCE, and framework analysis for consultation data.ResultsThirty-three patients participated in the DCE (mean age 84 years, SD 7.76). Patients preferred a service where family were contacted on admission and discharge (β 0.36, 95% CI 0.10 to 0.61), care received closer to home (β − 0.04, 95% CI − 0.06 to − 0.02) and the GP is fully informed about care (β 0.29, 95% CI 0.05–0.52).Four stakeholder consultations (n = 48 participants) generated 20 recommendations centred around three main themes: tailoring care processes to manage multiple care needs for an ageing population with frailty and multimorbidity; the importance of ongoing communication with patient and family; and clear and concise evidence-based tools to enhance communication between clinical teams and continuity of care on discharge.ConclusionFamily engagement is vital to manage clinical uncertainty. Both patients and practitioners prioritise engaging the family to support person-centred care and continuity of care within and across care settings. Patients wished to maximise family involvement by enabling their support with a preference for care close to home. Evidence-based tools used across disciplines and services can provide a shared succinct language to facilitate communication and continuity of care at points of transition in care settings.

The Gait Outcomes Assessment List (GOAL) questionnaire distinguishes family and patient priorities across GMFCS levels

The preparation and isolation of 5,5′-bis(2-hydroxytetrazole) by oxidation of 5,5′-bistetrazole using commercially available oxone is described. The nitrogen-rich salts including ammonium, hydroxylammonium, guanidinium, aminoguanidinium, triaminoguanidinium, 5-aminotetrazolium and aminonitroguanidinium have been prepared, characterized (XRD, NMR and vibrational spectroscopy, DSC, mass spectrometry) and compared to their 5,5′-bis(tetrazole-1-oxide) analogues. The impact, friction and electrical spark sensitivities of all compounds were measured and several detonation parameters such as the detonation velocities and detonation pressures were also calculated with the EXPLO5 code based on calculated heats of formation (CBS-4M) and the X-ray densities.