Family Priorities Research Articles

INNV-33. ADVANCING PRECISION TREATMENT FOR DIFFUSE MIDLINE GLIOMA: THE DMG LEARNING HUB INITIATIVE

Abstract Diffuse Midline Glioma (DMG) poses a significant challenge in neuro-oncology due to its heterogeneous presentation and limited therapeutic options. Clinical trials often serve as the primary avenue for treatment, yet families encounter numerous barriers in navigating and selecting appropriate trials. Health disparities, including disparities in medical literacy and access to specialized medical centers, further complicate decision-making processes. Existing registries lack comprehensive data integration, focusing on isolated perspectives of either research or clinical data, neglecting the holistic patient profile. Evaluation of treatment endpoints beyond Progression-Free Survival (PFS) and Overall Survival (OS) remain inconsistent, despite being a priority for families. The DMG Learning Hub emerges as a transformative platform designed to empower families by offering informed options and guidance while fostering a collaborative environment where patient families actively contribute to shaping the landscape of clinical trials. Leveraging AI-assisted matching, the platform assists families in navigating the complex decision-making process surrounding clinical trial participation. The inclusion of a patient-reported outcome journal feature enables families to track vital information such as symptom changes and supplement usage, with autonomy over the timing of shared data. Using real-time data sharing facilitates invaluable insights for researchers, bridging gaps that would otherwise be overlooked and enriching the collective understanding of DMG. Harmonizing molecular, imaging, and clinical data within the platform equips care teams with comprehensive, near-real-time information crucial for personalized treatment strategies. This integrated approach not only supports the inclusion of n-of-1 arms in current trials but also extends therapeutic opportunities to patients previously ineligible for studies due to specific disease markers or progression patterns. The DMG Learning Hub represents a significant stride towards precision oncology by synergizing patient-centric priorities with cutting-edge technology, integrating harmonized data, and fostering collaborative efforts, the initiative heralds a promising era of personalized treatment for DMG and beyond the neuro-oncology community.

Agency support for at-risk families: service provision, challenges and effective elements for intervention

ABSTRACT There is an urgent need to locate effective interventions for parents involved with child protection services (CPS), Oranga Tamariki in Aotearoa New Zealand. This article describes a qualitative research study that sought to understand: (1) the nature of service provision to families; (2) workers’ perceptions of challenges and effective treatment components in delivering intervention; and (3) effective practices for working with Māori. Participants were staff members working within NGOs, providing interventions to families with ongoing Oranga Tamariki involvement. Data comprised responses to semi-structured interviews (n = 9), interpreted using thematic analysis. Findings highlighted that all participants worked within family homes to deliver intervention, and drew on Te Whare Tapa Whā. Challenges included ongoing child maltreatment concerns and participants’ sense of responsibility for keeping children safe whilst being unable to do so adequately within their non-mandated roles. Perceived effective elements were: strong relationships, transparency, and having courageous conversations when needed. For indigenous clients, self-determination and the effects of colonisation were of prime importance. Themes highlighted responsive practice, with a pragmatic understanding that family priorities may not always align with professional views. This is consistent with international findings regarding challenges in delivering parenting interventions and identifies potential essential components for effective practice. HIGHLIGHTS Practitioners’ perceptions of essential elements to effective practice included: strong relationships, honesty, reciprocity, and directness regarding child protection concerns. Effective practices seen to be particular to working with Māori families were trusting, reciprocal relationships and ensuring self-determination and autonomy. Ethical tensions and a sense of complicity and helplessness at times were described, with ongoing child protection concerns evident during intervention for some families. Practitioners took a holistic approach to their work, expressing non-judgment, sympathy for, and understanding of the complex circumstantial and personal challenges faced by Oranga Tamariki-involved parents. Glossary of Māori terms: awhi: embrace, cherish; kaimahi: staff members; kanohi ki te kanohi: face to face; karakia: blessing; kaupapa Māori: Māori approach; kete: basket; kōrero: to speak; mana: prestige; manaakitanga: hospitality; mana whenua: people with rights over the land; marae: meeting house; Pākehā: New Zealander of European descent; pepeha: introduction; pēpi: baby; pono: true; pōwhiri: welcome ceremony; tamariki: children; tangata: people; tika: correct; tikanga: custom; tutū: mischevious; waiata: song; whakapapa: genealogy; whānau: family; whanaungatanga: relationship; whare: house.

Cracking the Wealth Puzzle: Investigating the Interplay of Personal Finance, Expenditure Behavior, and Financial Management

This paper investigated the wealth puzzle by examining the relationships among personal finance (PF), expenditure behavior (EB), and financial management (FM). Data from a diverse sample of 2000 individuals across regions such as Kosovo, Ghana, Kenya, Nigeria, Turkey, Pakistan, Nepal, Uganda, Cameroon, Ethiopia, India, Indonesia, Albania, Oman, and Egypt were collected through an online questionnaire from 2023 to 2024, and processed through exploratory and confirmatory factor analyses using AMOS and SPSS programs. Results revealed the robust relationships among PF, EB, and FM, indicating their resilience and strong internal consistency, and underscoring their pivotal role in shaping individuals’ financial stability and well-being. Notably, EB emerged as a crucial determinant, highlighting the importance of aligning spending habits with family priorities, moderating excesses, and consistently reviewing for improvements. Moreover, critical variables within PF and FM underscored the necessity for strategic financial planning, efficient spending optimization, and the cultivation of resilience against unforeseen financial obstacles. This research has significantly advanced the understanding of wealth dynamics and provided practical insights for policymakers and educators to design targeted financial education initiatives that can improve financial well-being and long-term prosperity. Future research should concentrate on understanding underlying mechanisms and assessing intervention effectiveness across more variables and countries.

Tracheostomy Decision Making and Counseling: Comparing Providers' and Caregivers' Perspectives and Perceptions.

Background: The decision to place a tracheostomy in children is complex and involves factors beyond the medical procedure, including quality of life, values, and goals. Providers play an important role in counseling caregivers and guiding them through the decision-making process. There are no established guidelines for tracheostomy counseling, leading to variations in practice. Additionally, how caregivers receive information differs from how providers believe they deliver it. Although studies have explored caregivers' and providers' viewpoints, none have examined them concurrently. Background: The primary aim of this exploratory study is to investigate differences between providers' and caregivers' perceptions of tracheostomy counseling and their perspectives regarding the decision-making process. Design: Semi-structured interviews were conducted with both caregivers and providers for children being evaluated for a tracheostomy. Qualitative analysis was applied to the interview transcripts to identify emergent themes. Subsequently, a comparative analysis was performed to compare these themes between caregivers and healthcare providers. Results: A total of 33 interviews were conducted, involving 16 caregivers and 17 providers. Notably, caregivers provided personal descriptions of their children in 81% of cases, whereas only 35% of providers did so. Concerns and fears for the children were expressed by 69% of caregivers and 59% of providers. In contrast, 75% of caregivers discussed their hopes and dreams for their children, compared with only 29% of providers. When it came to priorities, 69% of caregivers emphasized growth and development, and 38% mentioned discharge home, as opposed to 29% and 47% among providers, respectively. Conclusion: In conclusion, our study highlights a disconnect between caregivers and healthcare providers regarding tracheostomy counseling. These differing perspectives underscore the need for improved communication and understanding between the two groups. Recognizing these differences can help providers tailor their counseling approaches to better align with the values and priorities of families when making decisions about tracheostomy.

Listening to caregivers’ voices about the experience of integrating music therapy-informed activity in community-based rehabilitation in rural India

ABSTRACT Background This project is part of a four-year intercultural collaboration between Indian and Australian stakeholders studying to use of music therapy (MT)-informed activity in community-based rehabilitation (CBR) with disabled children and their families in rural Maharashtra. This paper presents a qualitative study of caregiver perspectives. Methods Interviews with four participating caregivers were thematically analysed, with an emphasis on participant voices. The combined thematic analysis of the four interviews revealed shared five themes. Results Data analysis revealed caregivers’ perception that music in CBR supported existing CBR goals. Furthermore, caregivers reported that music in CBR enhanced motivation and participation for children and families and fostered community connection. Importantly, caregivers noted that music made CBR fun and was a pre-existing resource. Conclusions Findings were congruent with research with other stakeholders in the intercultural collaboration. Caregiver perspectives offer new insight into the priorities of families in CBR, which has wider relevance arts and health workers in community-based practice.

Research Priorities of Individuals and Families with Sex Chromosome Aneuploidies.

Sex chromosome aneuploidies (SCAs) are chromosomal variations that result from an atypical number of X and/or Y chromosomes. Combined, SCAs affect ~1/400 live births, including individuals with Klinefelter syndrome (47,XXY), Turner syndrome (45,X and variants), Double Y syndrome (47,XYY), Trisomy X (47,XXX), and rarer tetrasomies and pentasomies. Individuals with SCAs experience a wide variety of physical health, mental health, and healthcare experiences that differ from the standard population. To understand the priorities of the SCA community we surveyed participants in two large SCA registries, the Inspiring New Science in Guiding Healthcare in Turner Syndrome (INSIGHTS) Registry and the Generating Advancements in Longitudinal Analysis in X and Y Variations (GALAXY) Registry. 303/629 (48.1% response rate) individuals from 13 sites across the United States responded to the survey, including 251 caregivers and 52 self-advocates, with a range of ages from 3 weeks to 73 years old and represented SCAs including Turner syndrome, XXX, XXY, XYY, XXYY, and combined rare tetrasomies and pentasomies. Results demonstrate the priorities for physical health and emotional/behavioral health identified by the SCA community, as well as preferred types of research. All SCA subtypes indicated intervention studies as the top priority, emphasizing the need for researchers to focus on clinical treatments in response to priorities of the SCA community.

Family Priority or Business Priority? Impact of Family Involvement on ESG Performance

Family Priority or Business Priority? Impact of Family Involvement on ESG Performance

Caregiver Perspectives on Telehealth Assessment and Other Supports for Infants with Early Developmental Concerns.

This study examined the experiences of families of children with developmental concerns in the first year of life, before formal diagnostic evaluations are typically conducted. We aimed to understand the impact of participation in a telehealth-based research evaluation in infancy, identify existing community-based supports perceived favorably by caregivers, and identify suggestions for future directions. Participants were recruited from an prior study evaluating a telehealth assessment for infants with early social communication delays. Here, we interviewed caregivers (n = 19) who participated in follow-up study in toddlerhood. Transcripts from the semi-structured interviews were transcribed and analyzed using both inductive thematic and content coding approaches. Analysis of these interviews resulted in four core themes describing caregiving during this time: (1) Caregivers felt lonely, overwhelmed, and dismissed by providers, leading to feelings of uncertainty about their child's development and future; (2) Telehealth assessments were appreciated because external supports are minimal, complex to navigate, and do not address all areas of need; (3) Desire for additional community and connection; and (4) Information is power. Caregivers reported participating in the telehealth assessments helped them to feel reassured, validated and supported. Outside the study, they sought a wide variety of services and resources. The most frequent requests were for parent coaching sessions and family navigation. Caregivers experienced uncertainty and disempowerment during the pre-diagnostic period and sought education and guidance during this time. Findings reflect the importance of centering family priorities when developing early intervention services for infants with elevated likelihood of autism.

"I Often Just Don't Know what to Say!": Variations in Multidisciplinary Palliative Care Clinicians' Confidence and Needs Related to Spiritual Care.

Spiritual care is a core component of high-quality palliative care, yet gaps exist in spiritual care provision. Understanding clinicians' levels of confidence around spiritual care and their perceptions of necessary knowledge/skills to enhance their ability to provide spiritual care is foundational for improving delivery of spiritual care in practice. To understand confidence levels with providing spiritual care and perceived needs in relation to the provision of spiritual care among palliative clinicians (nurses, social workers, chaplains). N = 260 clinicians participating in interprofessional communication and end-of-life care training programs completed a structured survey. Clinicians responded to 42 closed-ended questions assessing their confidence in engaging in spiritual care across 6 dimensions, and one open-ended question: "What areas of knowledge or skill would best help to improve your ability to provide spiritual care across diverse populations?" Findings reveal varied levels of confidence with spiritual care across dimensions. Chaplains reported the highest levels of confidence compared with nurses and social workers. Key areas of knowledge/skills to improve spiritual care provision were: (1) Training and support for clinicians in spiritual care; (2) Strategies for providing spiritual care to patients from diverse cultural and/or religious backgrounds; (3) Better understanding of specific populations and contexts that may affect spiritual care provision; and (4) Clinicians' personal growth & practices to improve spiritual care. Additional support with spiritual care provision is needed, especially among spiritual care generalists. A focus on culturally attuned care is needed, honoring unique patient contexts and centering patient and family priorities.

Important and Feasible Actions to Address Cervical Screening Participation amongst South Asian Women in Ontario: A Concept Mapping Study with Service Users and Service Providers.

Regular cervical screening can largely prevent the development of cervical cancer and innovative methods are needed to better engage people in screening. In Ontario, Canada, South Asian women have some of the lowest rates of screening in the province. In this study, we used concept mapping to engage two stakeholder groups-South Asian service users and service providers-to identify and prioritize points of intervention to encourage the uptake of cervical screening. After participants brainstormed a master list of statements, 45 participants rated the statements based off 'importance' and 'ease to address' in relation to encouraging cervical screening. A bivariate plot (X-Y graph) that shows the average rating values for each statement across the two rating variables (a 'go-zone' display) was produced to display priorities for implementation. Statements that were considered high priority to address reflected issues around education and awareness including understanding and communication related to cervical screening and preventative care, as well as the need for trusted sources of information. Statements that were considered high priority but challenging to implement were centered around fear, stigma, discomfort, family and personal priorities. This study highlighted that stigma, norms and social relations that impact the uptake of screening must be addressed in order for education and awareness raising to be effective and to move people from conviction around screening to action.

P.043 Developing a brief clinical dataset for Duchenne Muscular Dystrophy

Background: Duchenne muscular dystrophy (DMD) causes progressive muscle wasting. The Canadian Neuromuscular Disease Registry (CNDR) previously developed a comprehensive DMD dataset in accordance with the International Classification of Functioning, Disability, and Health (ICF). Our objective was to develop a brief ICF core set that best aligns with the priorities of individuals and families affected by DMD. Methods: A literature review of best practices was prepared and reviewed by a multidisciplinary team at the CNDR. The entire process involved patient and parent input and participation and was compliant with the World Health Organization guideline to develop brief ICF core sets. Results: An eight step process was developed. In brief, these included multi-stakeholder consensus meetings, ranking surveys, mapping to international standards, further consensus meeting, evaluation of clinical feasibility in multidisciplinary clinics across Canada, an integrated literature review, and development of a finalized brief ICF core set for DMD. Conclusions: The process of identifying the priorities of those living with DMD using the brief ICF core set will support post-marketing surveillance of novel therapies. The next step in this project will be to identify the specific outcome measures that best align with the brief ICF core set for DMD, for their eventual inclusion in the CNDR registry.

Engendering Agency, Mindfulness, and Critical Thinking in Online Education

Challenges remain in the conduct of graduate education even when Philippine society has already begun its so-called post pandemic recovery. Such challenges include but are not limited to shifting work arrangements, perturbations in personal and family priorities, and everyday socio-economic realities such as the traffic problem and the rising cost of living. Given this backdrop of hard realities and increasing pressure on the individual’s mental space, in which learners attempt to negotiate the pursuit of graduate studies, I draw on my lived experience in teaching graduate students at the Asian Center, University of the Philippines Diliman and problematize the issues in engendering agency, mindfulness, and critical thinking as desired states of being in an empowered, student-centered learning setting. Utilizing phenomenography, the study probes the approaches that were effective in teaching and learning as well as their challenges and the attendant contexts. I hope to contribute to the academic discourse on rethinking graduate education pedagogy.

PERSEPSI MASYARAKAT TERHADAP PERAN GANDA PADA PEREMPUAN SEBAGAI WANITA KARIER DALAM MEMBANTU EKONOMI KELUARGA

This study aims to determine the dual role of women as career women in helping the family economy through a home kiosk business in Pekanbaru, Riau. This research was conducted using a qualitative approach. The results of this study show that economic motivation is the reason for women to perform multiple roles in moderate categories. The results also showed that in terms of perception and action of multiple role strategies, the majority of women want a balance between the two (the priorities of family and business). The last result, family welfare, objectively falls into the welfare category, and subjectively falls into the medium welfare category.

A multi-level model of family enterprise corruption

Corruption is an important social and economic problem globally, and family firms are an important source of such corruption that we know too little about. By leveraging insights from the literature on family priorities, governance, and institutional environments, we develop a multi-level model highlighting why some family firms are prone to exhibit corruption in specific contexts. We focus on businesses where close connections between firm and family cause the priorities of the one to affect the other. There, family loyalties, conflicts, ethics, and social aspirations can enhance the willingness to engage in corrupt behavior. Private ownership and secrecy facilitate that behavior, as do tempting contexts with few institutional constraints. We provide examples and propositions for further research.

Consensus reporting guidelines to address gaps in descriptions of ultra-rare genetic conditions

Genome-wide sequencing and genetic matchmaker services are propelling a new era of genotype-driven ascertainment of novel genetic conditions. The degree to which reported phenotype data in discovery-focused studies address informational priorities for clinicians and families is unclear. We identified reports published from 2017 to 2021 in 10 genetics journals of novel Mendelian disorders. We adjudicated the quality and detail of the phenotype data via 46 questions pertaining to six priority domains: (I) Development, cognition, and mental health; (II) Feeding and growth; (III) Medication use and treatment history; (IV) Pain, sleep, and quality of life; (V) Adulthood; and (VI) Epilepsy. For a subset of articles, all subsequent published follow-up case descriptions were identified and assessed in a similar manner. A modified Delphi approach was used to develop consensus reporting guidelines, with input from content experts across four countries. In total, 200 of 3243 screened publications met inclusion criteria. Relevant phenotypic details across each of the 6 domains were rated superficial or deficient in >87% of papers. For example, less than 10% of publications provided details regarding neuropsychiatric diagnoses and “behavioural issues”, or about the type/nature of feeding problems. Follow-up reports (n = 95) rarely contributed this additional phenotype data. In summary, phenotype information relevant to clinical management, genetic counselling, and the stated priorities of patients and families is lacking for many newly described genetic diseases. The PHELIX (PHEnotype LIsting fiX) reporting guideline checklists were developed to improve phenotype reporting in the genomic era.

Drop Out and the Reasons, in the Public Primary Schools at Malir, Karachi,Pakistan

Introduction: Dropping out of school poses significant challenges to individual students, families, and society at large. By examining the underlying causes and consequences of dropout rates in primary schools, this study aims to shed light on this critical issue and inform strategies for prevention and intervention. Methodology: This qualitative study involves students, parents, teachers, and school administrators from public primary schools in district Malir. Purposive non-randomn sampling was used to select participants, and data was collected through semi-structured interviews. Thematic analysis was employed to analyze the data, exploring factors contributing to student dropout. Results/Findings: The study identified socio-economic conditions, academic difficulties, inadequate school environment, and teacher and peer behavior as key factors influencing dropout rates. Additionally, family priorities, such as earning income or supporting household chores, were found to contribute to student dropout. Future Direction: This research contributes to the understanding of dropout among primary school students and provides insights for policymakers, educators, and stakeholders. The findings underscore the need for evidence-based strategies, interventions, and policies to reduce dropout rates and promote educational success for all primary school students.

The Inequitable Years: Backcountry Experiences After Pregnancy

Summary Motherhood brings exciting changes and challenges. All at once you experience changes to family dynamics, priorities, work-life balance, and your leisure. In the case of outdoor leisure participation, a mother’s ability to participate is largely influenced by the age of your child, your physical stamina, and emotional or psychological ability to handle, expect, plan, and adapt to your child’s and your own changing needs during participation. Specifically, this is true in activities that take place in remote, or backcountry settings as opposed to urban or near-urban settings. Accessibility is limited to moms who can take on (and financially afford) to carry their child on their back for long periods at a time. Few trail systems, that are not located inside conservation areas or parks, are designed with accessibility in mind. For any parent, this includes not being stroller friendly. Social media is abundant with “hacks” for the once outdoorsy moms to get back outside with their kids but, unless you have the resources and time, this often is not realistic until you have an independently mobile child. Moms looking to participate in outdoor leisure with infants are subject to extensive costs, planning, and high levels of fitness to be able to enjoy outdoor spaces and wellbeing benefits. In this case study, I offer a reflection of my experience trying to re-enter the world of back-country hiking with an infant. I consider the financial, physical, and psychological constraints faced when trying to “belong” in the outdoors, in this new phase of life. Information © CAB International 2024

INVESTIGATION ON PREDICTING FAMILY PLANNING AND WOMEN’S AND CHILDREN’S HEALTH EFFECTS ON BANGLADESH BY CONDUCTING AGE STRUCTURE POPULATION MODEL

Bangladesh has a higher population density than most other nations in the world. This project aims to evaluate the effects of experimental family planning and maternal and child health. Bangladesh saw changes in the use of contraceptives, the continuation of contraception, fertility, and infant and child mortality between 2012 and 2022. The project's current goal is to guarantee improved family health. To satisfy the changing needs and priorities of families and to provide better health for all, this paper has proposed several novel initiatives, such as enhanced health and family planning services, and enhancing maternal and child health. The goal of this project is to improve the health of women and children through family planning using an age-structured population model. It also covers the graphical presentation of the data using programs like Matlab, Mathematica, Excel, and others.

What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders

Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. Aim: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. Design: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. Setting/participants: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children’s hospices and n = 12 Commissioners of health services. Results: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage ‘buy-in’ and administering measures with known and trusted professional. Conclusions: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.

Exploring caregivers' attitudes and beliefs about nutrition and weight management for young people with Duchenne muscular dystrophy.

Obesity disproportionately affects children and adolescents with Duchenne muscular dystrophy (DMD) and with adverse consequences for disease progression. This study aims to: explore barriers, enablers, attitudes, and beliefs about nutrition and weight management; and to obtain caregiver preferences for the design of a weight management program for DMD. We surveyed caregivers of young people with DMD from four Australian pediatric neuromuscular clinics. Survey questions were informed by the Theoretical Domains Framework and purposefully designed to explore barriers and enablers to food and weight management. Caregivers were asked to identify their preferred features in a weight management program for families living with DMD. Fifty-three caregivers completed the survey. Almost half (48%) perceived their son as above healthy weight. Consequences for those children were perceived to be self-consciousness (71%), a negative impact on self-esteem (64%) and movement (57%). Preventing weight gain was a common reason for providing healthy food and healthy eating was a high priority for families. Barriers to that intention included: time constraints, selective food preferences, and insufficient nutrition information. Caregivers preferred an intensive six-week weight management program addressing appetite management and screen time. Managing weight is an important issue for caregivers of sons with DMD; yet several barriers exist. Individualized 6 week programs are preferred by caregivers to improve weight management for DMD.