bluuebunny/crossref_metadata_2025_split huggingface dataset:
Prediction of long-term functional outcome following different rehabilitation pathways after stroke unit discharge
Authors: Nylén Malin C. , Abzhandadze Tamar , Persson Hanna C. , Sunnerhagen Katharina S. 
Published: May 2024

Objective: To investigate whether referral for different types of rehabilitation on discharge from Swedish stroke units can predict functional outcomes at 1 and 5 years after a stroke.
Design: A longitudinal and registry-based study.
Subjects/patients: A total of 5,118 participants with index stroke in 2011 were followed-up at 1 and 5 years after the stroke.
Methods: Ordinal logistic regression models were developed to predict the category of functional outcome: independent, dependent, or dead. The primary predictors were planned rehabilitation in a home setting, inpatient rehabilitation, and outpatient rehabilitation, with no planned rehabilitation as the reference category.
Results: Planned outpatient rehabilitation predicted independence (compared with death) at 1 year. Planned rehabilitation in the home setting predicted independence (compared with death) at 1 and 5 years. Compared with other planned pathways, participants planned for inpatient rehabilitation had more severe conditions, and planned inpatient rehabilitation did not predict independence.
Conclusion: Planning for outpatient or home-based rehabilitation appeared to lead more effectively to participants achieving independence over the course of 1–5 years. This may have been due to the less severe nature of these participants’ conditions, compared with those requiring inpatient rehabilitation.
Reduction of craving in an adolescent in residential treatment for addictions through a brief intervention: A case study
Authors: Ojeda Aguilar Yancarlo Lizandro , Martínez Martínez Kalina Isela 
Published: May 2024

Introduction: Craving refers to a subjective desire to consume substances. It has been found that craving is one of the best predictors of relapse, so it is important to address it during addiction treatment. The Brief Intervention Program for Adolescents (PIBA) has been shown to be effective in reducing drug consumption patterns, increasing self-efficacy to deal with consumption situations, and reducing problems associated with consumption in adolescents who are in middle or high school schools, as well as in outpatient addiction care institutions. However, the effectiveness of this program has not been tested with adolescents in residential treatment or in reducing craving. Objective: To evaluate the effectiveness of PIBA in reducing craving and increasing self-efficacy in a female adolescent who was in a residential center. Method: A single-case design was applied, consisting of the treatment and a follow-up at four months, intentional and non-probabilistic, with a 16-year-old female adolescent. Result: A reduction in craving was found throughout the treatment and maintained during the follow-up, as well as an increase in self-efficacy. Conclusion: These findings extend the effectiveness of PIBA to addiction components and populations not previously explored, suggesting that PIBA may be an alternative to work with these components and populations.
Clinical and radiological assessment of joints in people with haemophilia in Assam, Northeast India: a cross-sectional study
Authors: Dhal Bhabani Sankar , Dutta Anupam , Das Arijit , Borpatragohain Dhrubajyoti , Sharma Adity , Kashyap Arnav 
Published: May 2024

Abstract

Background
Despite the availability of factor replacement therapy, including prophylaxis, to treat and prevent bleeding, haemophilic arthropathy continues to be the most common complication of haemophilia and significantly impairs the quality of life in people with haemophilia (PwH). Regular periodic assessment of joint status in PwH is essential to identify early arthropathic changes and prevent the development or progression of haemophilic arthropathy. Kinematic and kinetic assessment are preferable and MRI is the gold standard for diagnosing haemophilic arthropathy, but availability is limited in developing countries. HJHS and ultrasound in conjunction with HEAD-US have been shown to effective in assessing changes indicating arthropathy.

Aim
This study is designed to identify which radiological assessment tool(s) works best when integrated with clinical assessment tools to examine joint health in PwH, with the aim of establishing a cheap, effective, multimodal approach to joint assessment in clinical practice in low resource settings which can then help to guide treatment.

Methods
A cross-sectional observational study was carried out among PwH attending a clinic in the department of medicine at Assam Medical College and Hospital, Northeast India, over a one-year time period. The elbow, knee and ankle joints of participants were assessed clinically and functionally using HJHS and FISH and radiologically by Pettersson (X-ray) and HEAD-US (ultrasound) scoring. The resulting data was analysed statistically to ascertain correlation between these parameters.

Results
Sixty-seven PwH were enrolled in the study, with a mean age of 21.69±8.24 years (median 21 years); 38 (57.72%) had severe factor deficiency. The majority (71.70%) presented with joint bleeds; 40 (59.70%) had the knee as a target joint, followed by the elbow (11; 16.41%) and ankle (6; 8.95%). Mean ABR (annual bleed rate), AJBR (annual joint bleed rate) and ATJBR (annual target joint bleed rate) values had a positive correlation with increased severity of factor deficiency (p <0.001). FISH score increased with factor activity level; HJHS, HEAD-US and Pettersson scores decreased with factor activity level. Significant positive correlation was established between Pettersson score, age and ABR. The degree of association was greatest between HJHS and HEAD-US at 60.62%; between HJHS and Pettersson it was 57.74%. Statistically significant negative correlation was established between FISH and HEAD-US.

Conclusion
A combined multimodal approach using the HJHS, FISH and HEAD-US scoring systems can provide a cheap, quick, more reliable and accurate option for assessing haemophilic joints, with minimal inter and intra observer reliability. This can support the optimisation of management of joint damage in PwH in resource-constrained settings.
Psychological experiences of mothers of children with severe haemophilia in Iranian culture: A phenomenological study
Authors: Feizi Fatemeh , Eshghi Ali , Firoozi Manijeh , Shormeij Zeinab , Panah Behnaz Habib , Eshghi Peyman , Rad Javad Alaghband 
Published: May 2024

Abstract

Introduction
Caregiving for children with haemophilia is a critical role that requires vigilance and significant lifestyle change, impacting on social activities, physical and psychological health and emotional experiences.

Aim
To explore the lived experience of mothers in Iran as caregivers of boys with severe haemophilia, focusing specifically on their psychological challenges.

Methods
This phenomenological study forms part of a larger study exploring psychological difficulties and social interactions of mothers of boys with haemophilia (BWH) in Iran. Semi-structured in-depth qualitative interviews were conducted with the biological mothers caring for one son with severe haemophilia A or B. Interview questions focused on challenges related to treatment, medication, prophylaxis and their interactions with HCPs, including the mothers’ feelings and coping mechanisms, and were adjusted to the Iranian cultural context. Participants were recruited from Mofid Comprehensive Care Centre for Children with Haemophilia (MCCCCH) in Tehran. Data analysis was based on van Manen’s six-step framework, using MAX.QDA software (2020), to identify themes. Findings were triangulated with findings from interviews with HCPs at MCCCCH about their perceptions of the challenges the mothers experience.

Results
Fifteen mothers of BWH were interviewed, most of whom had no or an unknown family history and no previous knowledge of haemophilia. Five themes and 27 subthemes of psychological experiences were identified. Themes included Daily emotional experiences; Challenge of acceptance; Defence mechanisms; Coping strategies (Emotion-focused and Problem-focused); and Positive expectations of the future. The most notable findings related to Daily emotional experiences and Defence mechanisms. Emotional reactions were diverse and included depression, fear and regret. Participants used a variety of defence mechanisms, including rumination and avoidance to try and overcome their situation.

Conclusion
If informed properly about medical issues and enabled to gain insight into their psychological responses, mothers of children with haemophilia in Iran may be able to better regulate emotional complexities and handle disappointment or unrealistic expectations, thereby enhancing their quality of life. There is a need for psychological services in haemophilia care in Iran that needs to be addressed in order to better support the wellbeing of patients and their families. This psychological supportive care should be informed by culturally appropriate guidelines and could be extended to similar communities in the Middle East.
Recognising the importance of the research nurse and study coordinators in enhancing retention of people with haemophilia in clinical trials
Authors: Khair Kate , Thykjaer Hanne , Barazani-Brutman Tami , Bellm Kelly , Benjamin Christopher , Wakefield Cindy , Williams Nicola , Wongwerawattanakoon Pakawan , Zhong Huiqun , Mulders Greta 
Published: May 2024

Abstract

Introduction
For retention in clinical trials of investigational medical products (CTIMPS), the strategy and tactics to keep enrolled participants from discontinuing participation (dropouts) are important. Haemophilia trials often have extended follow-up and require motivated participants who commit for the duration of the study, which may be underestimated at initiation. Study discontinuation may lead to inconclusive results and prolonged trials. Research nurses (RNs) and study coordinators (SCs) play an important role in clinical trials and are considered the link between principal investigator and study participants. We discuss the importance of the RNs and SCs in retention of participants, the barriers and challenges to retention, and the interventions utilised to support it.

Methods
We conducted a 12-question online survey at registration for a virtual research study update summit. The survey investigated the thoughts of RNs/SCs about retention in CTIMPS, their experiences and challenges, and interventions to prevent attrition.

Results
Eighty-seven RNs and SCs from 24 countries (Asia, Australia, Europe, the Middle East and North America) participated. The majority (62/75 responses) reported having 1-5 or 6-10 clinical trial participants (46.6% and 36% respectively); the remainder reported 11-40 trial participants. The majority reported no or few participants dropping out of haemophilia clinical trials in the preceding three years (42.8% and 33.7% respectively). RNs/SCs believed participants dropped out because of ‘loss of interest’ (50%), ‘study going on too long’ (39%), ‘too many visits’ (virtual or at centre) (37.5%), ‘visits are too time-consuming’ (34%) and a ‘lack of time’ (32.8%). Over half of RNs/SCs believed ‘dropouts’ would be higher if they did not make extra efforts in retention. The top interventions to retain participants were: keeping an open dialogue, organising visits to fit participant schedules, discussing adverse events, understanding the protocol, and allowing participants time to ask questions. Retention is achieved through flexibility, timeliness, combining trial activities with routine care, shared decision making and effective communication, including via contemporary technology.

Conclusion
This study investigating the retention role of RNs/SCs revealed low dropout rates in haemophilia trials. RNs/SCs are able to offer flexibility to trial procedures by, for example, scheduling visits within trial timing ‘windows’ to support and facilitate individualised follow-up. Patient-centred care and attention, including trust, attitude and expectations, aid successful retention and trial outcomes. This often unrecognised role is important in supporting people with haemophilia in clinical trials to promote good study outcomes.
Living, Caring, Learning – Addressing challenges in the transition to adult care
Authors: Mulders Greta 
Published: May 2024

Abstract
Greta, a specialist nurse at one of the largest haemophilia treatment centres in the Netherlands, reflects on the role one particular patient played in helping to reshape her centre’s approach to the process of transition from paediatric to adult care. The patient, a young man with severe haemophilia B and an inhibitor, experienced frequent bleeds and venepuncture was sometimes difficult. He continued to be reliant on his mother to administer injections and order his treatment. Greta considers the importance of ensuring young people transitioning to adult care have the knowledge and skills they need to manage their haemophilia while balancing this with the reality of an individual’s circumstances, often including the ongoing role of parents in their lives as supporters and caregivers. She suggests that transition is best approached as a gradual process rather than an event, reflecting on how this helps to build trust between the new health care team and both the patient and their parents. She also points to the importance of supporting parents through the transition process as needed. Greta is clear that an approach to care that seeks to understand individuals and acknowledges the feelings of everyone involved can make a difference in enabling successful transition to adult care and in patient care more generally.
Living, Caring, Learning – Trust and teamwork in patient care
Authors: Sisdelli Marcela Ganzella 
Published: May 2024

Abstract
Marcela, a nurse specialist in Brazil, reflects on the importance of trust in the therapeutic relationship in achieving the best patient outcomes. She describes her experience with a patient with severe haemophilia A and an inhibitor. The patient was non-adherent to his treatment regimen and immune tolerance induction (ITI) failed. At a time when he was experiencing increasing joint problems and pain due to bleeding, the treatment centre was approached regarding a clinical trial of a novel non-factor replacement therapy. Following discussion among members of the care team and with the patient, a decision was made to put him forward for the trial, despite concerns about his ability to adhere to the trial treatment regimen. The patient completed the trial, his quality of life improved and he continues to have prophylaxis with emicizumab. Marcela goes on to reflect on the role this new treatment likely played when the patient was involved in a serious accident and the surgeries that followed. She highlights the importance of not giving up on patients who present a challenge and working closely together with treatment centre colleagues to achieve the best care for individual patients.
A multidisciplinary approach to optimising the virtual management of haemophilia: a roundtable meeting of UK experts
Authors: Benson Gary , Bhandari Trupti , Gomez Keith , Holder Kerry-Ann , Stephensen David , Wilkinson Alice , Mangles Sarah 
Published: May 2024

Abstract
The necessity of a multidisciplinary team (MDT) approach in haemophilia care is well recognised globally, with international guidelines advocating this. Prior to the coronavirus disease 2019 pandemic, virtual MDT haemophilia care was gaining support worldwide. However, the pandemic necessitated the rapid implementation of innovative virtual solutions to ensure continued access to multidisciplinary care. A multidisciplinary panel of healthcare professionals who specialise in haemophilia care in the United Kingdom gathered to discuss the following: the current landscape of haemophilia MDT care and best practices, the benefits, challenges, and opportunities for virtual MDT care, managing bleeds remotely, virtual paediatric care, and the future of virtual MDT care. The consensus was that virtual MDT care is widely used, however formats vary depending on the healthcare setting, available resources, MDT preferences, and local policy. Advisors agreed that virtual MDT care has several benefits, such as improved convenience/choice for their patients and wider patient reach. However, many patient-specific and logistical challenges exist. Hybrid care models may provide an opportunity to overcome these challenges. The decision on how bleeds are managed (virtually versus face-to-face) depends on provider preference, the patient-provider relationship, and the patient’s disease severity, history, and ability to self-manage. As such, this should be assessed on a case-by-case basis. Virtual tracking tools cannot be solely relied upon for MDT decisionmaking as patient accuracy cannot be ascertained. The MDT composition for paediatric care should be tailored to the patients’ and their parents’/caregivers’ needs. Lastly, hybridised care will likely be adopted for future haemophilia management and will facilitate the advancement of MDT care.
Intellectual Capital in Management of Village Credit Institutions Towards Business Sustainability Based Catur Purusa Artha
Authors: Yuliastuti Ida Ayu Nyoman , Manuari Ida Ayu Ratih , Tandio Daniel Raditya 
Published: May 2024

Objectives: Business continuity of the Village Credit Institution in Bali is closely related to the customs and culture of Balinese society, which are based on Hinduism. The key to successful intermediation by the Village Credit Institution as a microfinance institution is heavily influenced by local rules strictly adhered to by the Balinese people. The key to competitive advantage for the Village Credit Institution can be seen from the number of strategic resources it possesses, especially immaterial or intangible assets that are not visible on the balance sheet. The research objective is to test the Resource-Based View Theory in relation to intellectual capital and business continuity of the Village Credit Institution, as measured by the philosophy of Catur Purusa Artha.

Methods: The research method used to answer the research objectives involved a quantitative test with a Partial Least Square (PLS) approach.

Results: The results of the research show that structural capital, social capital, and reputation capital can improve the performance and continuity of the Village Credit Institution. The mediating variable tested in this study is the performance of the Village Credit Institution, which serves as a mediating variable for the effect of structural capital, social capital, and reputation capital on the sustainability of the Village Credit Institution in Bali. Increasing structural capital involves a better understanding of the organizational structure that emphasizes internal control structures and social capital, which includes understanding the common goals of traditional villages. Reputation capital involves maintaining policies that favor indigenous villagers without sacrificing the profitability of the Village Credit Institution.

Conclusion: The study concludes that intellectual capital, including structural, social, and reputation capital, plays a significant role in enhancing the performance and sustainability of the Village Credit Institution in Bali. The research highlights the importance of maintaining a balance between adhering to local customs and ensuring profitability to achieve long-term business continuity.
Manual Scavenging at Early Age: a Critical Analysis from the Perspective of Children of Manual Scavengers as Child Labour
Authors: Kennedy John , Chatterjee Ishita 
Published: May 2024

Objective: The Children of Manual Scavengers' suffer the socio-legal marginalisation as daily reality. They are legally abandoned, monetarily impoverished, and socially tainted. Due to the caste system, they are compelled to take up their parents' traditional occupation of manually removing human excreta. The hidden reality causes children of manual scavengers to live in constant agony. The aim of this study is to examine the legislative actions and judicial activism to uphold their human dignity and equality throughout their lives and prohibiting manual scavenging.

Methods: The research is a type of doctrinal research. It is normative legal research based on analyzing the legal measures, case laws and principles.

Results and Conclusion: The children of manual scavengers enter into the traditional occupation of manual scavenging along with their parents as caste forced occupation and suffer the child labour. Moreover, the legislative measures on protection of child rights have not affected in their life.

Research Implications: The research highlights that the children of manual scavengers who are engaged in manual scavenging at their early age suffer the deprivation of human rights and dignity.
Role of Standard Setting Organizations in the Indian Ict Sector: an Intellectual Property Law Analysis
Authors: Chakraborty Amlan 
Published: May 2024

Introduction: Standard-setting organizations (SSOs) are critical policy-making bodies that have a decisive bearing on technical sectors that are not just global, but also in Indian society. They form rules that become the reference point for stepping up the development and deployment of the tech. This study is designed to open the curtains and delve into SSOs' standard-setting process in the Indian ICT sector and assess the challenges that emerge.

Objectives: The worldwide efficient methods employed by the global SSOs and contrast them with the Indian ones to spot correlations. Moreover, Indian SSOs' IPRs hidden under Indian patent laws will be also looked at. In the end, apart from the recommendations for upgrading and aligning the policies regarding the standardization of ICT equipment in India, we will also provide some suggestions.

Theoretical Framework: The sequel of this process will be the exploration of IP laws such as patents in India focused solely on patent licensing - the standardization practice carried out by patentees.

Results and Discussion: Emphasize the standard-setting actions of Indian SSOs by highlighting the problems encountered. A comparative analysis of substantive cooperation between inter-planetary and Indian anti-space security organizations will be carried out. Lectures covering how Indian SSOs match the Indian Patent Act and Rules will accordingly be given. The implications of the high effect of ICT standardization in India will be suggested. Considerable facts will be culled from doctrinal law, and each of the methods used in the licensing of education institutions will be examined.

Research Implications: Improving standard-setting processes by key Indian SSOs such as BIS(Bureau of Indian Standards), ISRO (Indian Space Research Organisation) and ISIF (Indian Standards and Industrial Classification of All Economic Activities) Moreover, the Indian IP legal system and licensing structure will be proposed to ensure integration barriers are addressed and the standardization of the ICT is improved.