Family Support Research Articles

OA23 A complex case of psoriatic juvenile idiopathic arthritis

Abstract Introduction This patient demonstrates many of the challenges that can be faced when treating juvenile idiopathic arthritis (JIA). The combination of difficult to treat disease, together with her social situation has made her case a particularly challenging one. Her case outlines the necessity of a multidisciplinary, and multi-agency, approach to treatment to ensure patient’s needs are met. Case description This patient presented at five years old with a several year history of swelling in her knees and feet. On examination she had a polyarthritis affecting bilateral metacarpal-phalangeal joints, both wrists, both elbows, and both knees. She is ANA negative and RF negative. She was initially treated with intravenous methylprednisolone (IVMP), methotrexate and joint injections. This patient’s disease has been very difficult to treat, with inadequate response to multiple medications (see table 1). She has had multiple flares, required 12 General anaesthetics for joint injections, as well as several pulses of IVMP to help control her inflammation. The patient has persistent effusion of her knees, not responsive to intra-articular steroids and the presence of significant crepitus. An MRI of her right knee showed 14 mm loose bony fragment, in addition to synovitis and effusion. The orthopaedic team were not keen to manage this surgically. She was discussed with other centres, following which combination of biologics / biologic with small molecule (JAK inhibitors) was felt to be the next option. Adalimumab was added to Tofacitinib in June 2024 due to inadequate control. Discussion The difficulty in treating this patient have made us consider alternative diagnosis. MRI scans of her hips done in April 2023 showed bilateral coxa vara. This, along with no evidence of erosions and poor response to treatment, raised the possibility of Camptodactyly-arthropathy-coxa vara-pericarditis (CACP) syndrome. However, she did not have camptodactyly, her echocardiogram did not show pericardial effusion and the genetic testing was negative. This patient has a complex social background. She lives with her mother, and no longer has contact with her father, or his side of the family. Her mother was involved in a car accident many years ago and due to a traumatic brain injury has difficulty with memory. Her mother has also suffered with depression. This, together with financial difficulties, have led to many missed appointments and concerns around compliance, despite continuous support from our specialist nursing team. The patient has poor school attendance- more than can be accounted for by her disease. Her current school are very supportive. They give reminders about appointments, and a teacher collects her from home and takes her to school each day. When she starts secondary school this level of support will not be available. Providing psychological support has been challenging due to her age and available resources. However, now she is 11 years old she will be able to get involved with our youth team. She struggles with needle phobia, and is very self-conscious about her swollen knees, and the sound they make when she moves. At various times, safeguarding referrals have been made to try to support the family, none of which were accepted. Her mother’s reluctance to accept support from social services did not help either. This has presented the team with many challenges. Key learning points • This is a challenging case of psoriatic JIA, unresponsive to multiple biologic agents, complicated by difficult social situation influencing care decisions. Non-attendance to clinics has contributed to delay in escalation of treatment at times. She was discussed at various regional and national MDT meetings, both in terms of diagnosis and management plans. Other differential diagnoses were considered and ruled out. • The importance of addressing all the biopsychosocial aspects of care are highlighted in this case. The difficulty of balancing ongoing rapport and trust with the family, and ensuring safeguarding for the patient has been challenging. Learning points: • Importance of multi-agency and multi-centre working in management of patients with complicated JIA. • Importance of difficult social situation affecting timely management decisions and the role of family support in optimising medical care. • Even with newer treatments being approved on regular basis for JIA, it is important to recognise there are patients who prove resistant to many of these and more evidence is needed for combining biologics in such patients.

Weight status and psychosomatic complaints in Swedish adolescent boys and girls: does family support play a buffering role?

BackgroundPsychosomatic complaints have increased among adolescents in recent decades, as have overweight and obesity rates. Both of these trends are regarded as public health concerns. However, the associations between weight status and psychosomatic complaints are not yet clear, necessitating further research. The aim of the present study was to investigate the associations between weight status and psychosomatic complaints in Swedish adolescent boys and girls, as well as to explore the potential buffering effect of family support.MethodsThe data was obtained from the cross-sectional Swedish Health Behaviour in School-aged Children (HBSC) study conducted in 2017/18, which involved 3,135 students aged 11, 13, and 15 years. Weight status was based on self-reported information on weight and height, which allowed for the calculation of body mass index (BMI) and the categorisation of participants into three groups: non-overweight, overweight, and obese. Psychosomatic complaints were assessed based on information regarding the frequency of eight different complaints, which were summed into an index. Family support was measured using three items describing the level of perceived emotional support, and an index was created, which was dichotomised into low and high family support. Gender stratified linear regression models were run to examine the associations between weight status and psychosomatic complaints. Age and family affluence were included as covariates. Interaction terms were included to evaluate whether family support moderated the main association.ResultsObesity was associated with higher levels of psychosomatic complaints in both boys and girls when compared to being non-overweight (boys: b = 2.56, 95% CI 0.32, 4.79; girls: b = 3.35, 95% CI 0.77, 5.94), while being overweight did not show any statistically significant associations with the outcome (boys: b = 0.21, 95% CI -0.72, 1.15; girls: b = 0.78, 95% CI -0.42, 1.98). In girls, a statistically significant interaction effect between family support and weight status was observed (p = 0.031), indicating that family support buffered against psychosomatic complaints in girls with obesity. No statistically significant interaction was found for boys (p = 0.642).ConclusionsThe findings of this study highlight the importance of public health initiatives aimed at preventing childhood obesity. They also underscore the significant role of family support in reducing psychosomatic complaints among adolescents with obesity. Further research is necessary to gain a deeper understanding of these relationships.

Key Success Factors in Entrepreneurial Development among Women Micro-Entrepreneurs in Malaysia

This study explores factors influencing entrepreneurial development among women microentrepreneurs in Malaysia. Using self-administered questionnaires distributed to 50 participants, the research examined four key factors: family support, business prospects, sociocultural factors, and government support, with entrepreneurial development as the dependent variable and perception of success as a mediator. The data was analyzed using SmartPLS software. Results indicated that most variables had reliable Cronbach Alpha values, though issues with discriminant validity were found. The structural model showed substantial explanatory power, and most path coefficients indicated positive relationships, except for the link between government support and entrepreneurial development. However, only one hypothesis was accepted, revealing that socio-cultural factors significantly influence entrepreneurial development through the perception of success. The study suggests that future research should focus on specific sectors within microenterprises and include a larger sample size for a broader understanding of women’s economic contributions. This research provides valuable insights for policymakers aiming to enhance support for women microentrepreneurs in Malaysia.

The Role of Informal Supports on Parent Stress and Family–Professional Partnerships of Latino Parents of Children with Disabilities

ABSTRACT Informal supports have been identified as frequently accessed sources of support for Latino families, and challenges Latinos face in obtaining adequate support through formal sources are also recognized. However, informal supports may be less available to parents of children with disabilities. The current study looks at the relationships between parent stress, informal social supports, and family professional partnership (FPP) for Latino parents of children with disabilities. In this study 168 parents who identified as Latino and a parent of a child with a disability completed surveys in early 2022 about their parenting stress, sources of support, and FPP. The study highlights nuances in the relationships between these constructs, among Latino parents of children with disabilities, and found when a parent reports low informal supports, there is a significant relationship between parent stress and FPP, specifically when measuring the total support offered and support provided to a child by an educator. Increased awareness of informal and formal supports available to and accessed by Latino families will help educators gain a more complete picture of the needs of a child and their family, and can inform the efforts around building relationships with the families they serve.

Self-Care Practices and Perspectives in Managing Coronary Heart Disease Patients: A Qualitative Study

Background/Objectives: Self-care experiences and understanding of coronary heart disease (CHD) play a pivotal role in the management of CHD and can contribute to positive health outcomes. This qualitative study aimed to explore the views and experiences of CHD patients, their families, and Indigenous leaders about self-care practices of CHD. Methods: A qualitative design employing semi-structured interviews and a focus group discussion was used. Employing purposive sampling, 49 respondents, comprising 30 patients, 10 family members, and 9 Indigenous leaders, were recruited and interviewed from April to September 2022. The data were analyzed using content analysis. Results: Five major categories were constructed: (1) inadequate knowledge and early symptom identification; (2) self-care activities for physical, psychosocial, and spiritual needs; (3) family and kinship support for self-care efforts; (4) barriers to self-care including physical, psychological, and access issues; and (5) health improvement expectations based on culturally sensitive health education. Conclusions: The study reveals significant gaps in knowledge about CHD and the identification of early symptoms among patients, families, and Indigenous leaders. Despite efforts to meet physical, psychosocial, and spiritual needs, self-care is hindered by various barriers, including limited access to healthcare and entrenched habits. The support from family and kinship systems is crucial for self-care. Participants expressed a strong desire for culturally tailored health education and better health control to improve heart health outcomes.

Tools for effective patient education to manage outcome expectations in paediatric facial reanimation: a systematic review

Aim: Informed consent for paediatric facial reanimation requires effective patient/parent education and involvement in a shared decision-making (SDM) process to help set their expectations and understanding from the outset. No article in the current literature has systematically reviewed the available tools for facilitating effective patient/parent education and the validity of informed consent in the context of paediatric facial reanimation. Methods: A systematic literature review was undertaken, following the Preferred Reporting Items of Systematic Reviews and Meta-analyses (PRISMA) 2020 guidelines. MEDLINE via PubMed, Embase and Cochrane Library were searched and the results screened and reviewed in accordance with pre-defined inclusion and exclusion criteria. Results: The initial search yielded 478 articles, of which only 4 fulfilled the study’s inclusion criteria. One cohort study evaluated qualitative feedback from patients and their relatives participating in a family education and support day for paediatric facial palsy, while another article from the same group reviewed the readability of online education resources. The remaining two articles represented educational reviews focusing on treatment and patient education based on expert opinion without providing original outcome data. Conclusion: There is a paucity of evidence regarding patient/parent education to support the informed consent process for children undergoing paediatric facial reanimation. There remains a need for further resources and platforms to be developed that may support children and their parents in engaging in a SDM process, setting appropriate expectations, and providing valid informed consent for their surgery.

Culturally responsive modifications to Gottman's Seven Principles Program for Arab American Adults: A feasibility study

AbstractObjectiveTo assess the feasibility of implementing a culturally responsive version of Gottman's Seven Principles relationship education program in a community‐based setting for married Arab American adults.BackgroundTo provide high‐quality couple and relationship education, it is necessary to acknowledge the population's needs and cultural backgrounds. One ethnic minority group that needs special attention is the Arab American community, which shares protective factors in terms of family support, religious beliefs, resiliency, and collectivist culture.MethodWe adapted Gottman's Seven Principles Program and conducted a qualitative feasibility study to examine recruitment capability, program acceptability, demand, and participant response among 16 Arab American married adults.ResultsThe results emphasize the vital role that thoughtful cultural and linguistic program adaptation played in increasing the acceptability and engagement of Arab American participants. However, results identified the ongoing stigma in Arab American communities against overtly seeking help for marital issues.ConclusionThis feasibility study provides helpful methodological and practical guidance to inform the design of larger scale randomized trials examining the efficacy of culturally responsive marriage education programs.ImplicationsThis study outlined actionable strategies, adaptations, venues, and communication channels to reduce barriers and optimize the delivery of marriage education to Arab American couples and families.

Family Support for Student Wellbeing of Migrant Students at Universitas Hasanuddin Makassar

study aims to determine whether there is a relationship between family support and the welfare of migrant students. Knowing the level of student well being, and knowing the effective contribution of family social support to student well-being. The research subjects were 115 overseas students at Universitas Hasanuddin Makassar. The method uses a quantitative approach. The data analysis technique used in this study is the Product Moment correlation of the person. Based on the results of data analysis, the correlation coefficient was obtained as ???????????? = 0.723 with sig. = 0.000; p < 0.001, so that the proposed hypothesis is accepted, it can be said that there is a very significant positive relationship between family social support and student well-being. The effective contribution of family support to student well-being is 63.5% and the remaining 36.5% is influenced by other variables. The level of student well being of overseas students is included in the high category with an empirical mean of 69.20 and a hypothetical mean of 57.5. Family support is included in the high category with an empirical mean of 79.25 and a hypothetical mean family support scale of 62.5

Family Support and Disability Policies: Perspectives of Siblings of People With Intellectual and Developmental Disabilities

Given the critical shortage of community providers and a growing aging population of individuals with intellectual and developmental disabilities, siblings are expected to provide caregiving for their brothers and sisters with intellectual and developmental disabilities. However, family support and disability policies often do not acknowledge siblings as caregivers who need support, and thus, do not include siblings’ voices. In this study, we conducted a national, web-based survey to examine the perspectives of 611 siblings of individuals with intellectual and developmental disabilities. Specifically, we examined their perceptions toward family support and disability policy as well as their knowledge and relevance of such legislation. Overall, siblings were not well-informed with relevant family support and disability policies. Furthermore, the knowledge of policies was only associated with their feelings of connectedness to the disability community. Based on these findings, it seems necessary that siblings are included in future efforts to shape family support and disability policy.

Love On The Different Spectrum

People with Autism Spectrum Disorder (ASD) have often been wrongly viewed as asexual. However, research suggests that their romantic and sexual experiences are more nuanced and deserving of further exploration. By addressing these areas, the study aimed to foster a more supportive and understanding environment for individuals with ASD as they navigate the complexities of relationships. This study delved into the romantic and sexual lives of young adults with ASD, focusing on a young man to understand how his condition influenced his partner preferences and relationships with friends, classmates, and family. Through a semi-structured interview and interpretative phenomenological analysis (IPA), the study uncovered three key themes: (a) navigating social interactions and boundaries; (b) understanding love and relationships; and (c) desires and expectations in relationships. These insights highlighted the need for tailored sex education, family support, and positive media portrayals. According to the study, a male adolescent with autism spectrum disorder (ASD) has difficulty interacting socially, particularly when it comes to recognizing cues and establishing limits with others. His romantic aspirations may be impacted by his inability to comprehend emotions and the impact of societal prejudices. The results show that to normalize his experiences and promote healthy relationships, family support, specialized sex education, and favorable media portrayals are essential.

Address of Thanks By Kharam Molbog, MD (Batch 2024 Valedictorian)

The valedictory speech given by Kharam Molbog for the Class of 2024 at the University of Santo Tomas - Faculty of Medicine and Surgery, centers on resilience, humility, and gratitude. Molbog shares his journey from humble beginnings, to ultimately becoming valedictorian despite numerous challenges, including a medical condition and personal setbacks. His story underscores a message of persistence, the importance of community, and self-belief, capturing his transformation through hard work and the support of family, friends, and mentors.

Factors Associated with Supportive Care Needs Among Palestinian Women with Breast Cancer in the West Bank: A Cross-Sectional Study

Background: Breast cancer (BC) is the most common cancer among women in Palestine, where the need for supportive care frequently goes unmet. Therefore, this study aims to assess the supportive care services provided at the governmental hospitals in the southern area of the West Bank and to determine the factors associated with the unmet needs of these services. Methods: A cross-sectional study was conducted on 362 women with BC. Data were collected using a face-to-face questionnaire that included the Supportive Care Needs Survey (SCNS-SF34), patients’ sociodemographic, economic, and clinical characteristics, as well as familial history of cancer and social support. Results: The study revealed that 61% of participants had unmet supportive care needs, with health system information, physical support, and psychological support being the most unmet needs. Factors contributing to unmet needs included age, marital status, familial support, and a family history of cancer. Chemotherapy and surgery increased the probability of physical care needs by fivefold, while hormone therapy reduced the probability of psychological needs (AOR = 0.36, p < 0.001) and patient care and support needs (AOR = 0.49, p = 0.01). Additionally, radiotherapy reduced sexual care needs by 58% and biological therapy by 60%. Conclusions: There is an urgent need for enhanced supportive care services for BC patients in the West Bank, especially regarding health system information, physical care, and psychological support. Addressing these needs through targeted interventions could significantly improve patients’ quality of life.

Understanding the support dynamics for LGBTI+ youth in Spain during and after the COVID‐19 pandemic

AbstractThis qualitative study explores the experiences of LGBTI+ youth in Spain during the COVID‐19 pandemic, focusing on family, social, educational and healthcare support mechanisms. The findings, based on five focus groups, highlight the pivotal role of family support during the pandemic, increased isolation and a reliance on online connections, the challenge of transitioning to online school platforms and insufficient understanding amongst healthcare professionals. The study examines adult and institutional support structures in relation to the complexities of LGBTI+ youth experiences beyond heteronormative and cisgender paradigms. It advocates applying a child‐centric approach to policies and services tailored to LGBTI+ youth needs.

Downward Intergenerational Support and Well-Being in Older Chinese Adults

Life satisfaction, as an important indicator of subjective well-being, is crucial for older adults. This study aims to examine the effects of downward intergenerational financial and practical support on life satisfaction among older adults in China, while exploring the mediating role of self-esteem and the potential differences across gender. Data were collected from 507 older adults aged 60 and above in China. The findings indicate that both financial and practical support provided by older adults positively predict their life satisfaction. Mediation analysis reveals that self-esteem partially mediates the relationship between downward intergenerational support and life satisfaction. This suggests that helping their children enhances older adults’ sense of self-worth, which in turn improves their overall well-being. Gender differences were also observed: financial support had a stronger impact on life satisfaction for men, while practical support was more significant for women. These results highlight the influence of traditional gender roles and cultural expectations on the dynamics of intergenerational support in contemporary Chinese families.

Having dumplings with a fork: language use and ideologies of a Fuzhounese-American youth

ABSTRACT This case study investigates the language use and ideologies of a Chinese-American youth who speaks English, Mandarin, and Fuzhounese, and lives in a predominantly white town. It addresses the scarcity of research on Chinese heritage speakers of varieties in addition to Mandarin, particularly those living outside Chinese communities with extensive heritage language resources. The participant mainly spoke standard English in formal domains, colloquial English informally, and a mixture of English and basic Mandarin at home with his parents, while predominantly using English with his sister. He knew only a few words in Fuzhounese, which was rarely spoken in his daily life. His language ideologies interacted with his identity as a Chinese-American, perceptions of linguistic hegemony, and iconization pertaining to different ethnic communities. He viewed Mandarin as his heritage language with global significance, while Fuzhounese, despite of not mutually comprehensible with Mandarin, was only regarded as a dialect by him, iconized with negative stereotypes about rural Fuzhou and Brooklyn Chinatown. The study enhances our understanding of how multilingual children from immigrant families navigate different languages, and provides implications for offering culturally and linguistically sensitive support for immigrant families speaking less commonly taught languages outside their ethnic communities.

Coparenting Approach to Being Successful Exclusively Breastfeeding

Breast milk is the first nutrient for infants because it contains essential nutrients for growth and development, so exclusive breastfeeding can prevent the risk of stunting and wasting in children. The lack of breastfeeding in infants is a threat to the long-term growth and development of children. Effective coparenting strongly impacts breastfeeding success rates because of its positive energy. Developing effective coparenting during the transition to becoming a parent is very helpful in the process of carrying out the role of parent, resolving conflict and supporting one's partner in raising children. The study aimed to analyze the success of Coparenting Approach to Being Successful Exclusively Breastfeeding. This research method is an observational study with an analytic cross-sectional design using a quantitative approach; the population in this study was 393 people in the Glagahagung Community Health Center Working Area sampling with a purposive sampling technique, based on inclusion and exclusion criteria where a number of respondents were exclusively breastfeeding with a total of 78 respondents. The results showed family support p value = 0.000, technological advances p value = 0.000, and lifestyle p value = 0.000. Based on the results show that the regression coefficient for family support is .716, this shows that increasing the family support variable will increase the coparenting approach variable in the success of providing EBF by .716, the trends and lifestyle regression coefficient is -.452, so this shows that trend and lifestyle variables reduce the influence on the coparenting approach in the success of providing EBF.

Educabilidad, desigualdad social y diversidad cultural: un análisis desde la perspectiva sociológica de Néstor López

The article, the result of ongoing bibliographic research, addresses educability from the sociological perspective of Néstor López. He argues that educability is not inherent to individuals, but depends on the interaction between the conditions students bring with them and the expectations of the school. The analysis highlights two fundamental gaps that affect educability: the economic gap, related to material inequalities and family support, and the cultural gap, linked to identity differences and the treatment they receive within the educational system.López proposes that both the family and the State play key roles in creating the necessary conditions for educability. The State must ensure resources and social welfare, while schools should adapt their expectations and pedagogical practices to the realities of students, rather than expecting them to conform to the "ideal student".

Career Duality and Work Performance: Insights from Women in Bangladesh

This study looks into how women's professional success in Bangladesh is affected by career dualism, work-life balance, and cultural expectations. Data were gathered from thirty women in Dhaka who worked in the public, private, and self-employed sectors using a qualitative study methodology. The research utilized semi-structured interviews and theme analysis to effectively capture the intricacies of the participants' perspectives, underscoring the subjective aspect of work-life balance. The participants brought to light considerable difficulties in juggling dual responsibilities as careers and professionals, which are made worse by inflexible gender stereotypes and restricted access to childcare facilities. The results show that women's ability to balance conflicting demands is greatly aided by family support, especially that provided by mothers and spouses. However, respondents said that the lack of maternity benefits, childcare services, and flexible schedules were substantial barriers, and that workplace regulations frequently lacked the flexibility required to meet women's multiple obligations. The study also looks at the post-pandemic trend towards remote employment, which brought difficulties since it blurred the lines between home and professional life even while it offered flexibility. The critical need for institutional reforms-including the implementation of family-friendly workplace practices like paid parental leave, on-site daycare, and remote work options-is highlighted by this study. It also emphasises how crucial cultural changes are to easing the burden on women who want to advance professionally but are under pressure to live up to conventional norms. To investigate the effects of career duality on professional women's long-term career growth and well-being, longitudinal research approaches should be used in future studies.

Health-related quality of life and associated factors among children with Transfusion-dependent β-thalassaemia: a cross-sectional study in Guangxi Province

BackgroundTransfusion-dependent β-thalassemia (TDT) is a severe inherited disorder. Without regular treatment, patients with TDT experience complications that can significantly shorten life expectancy and severely impact both their quality of life and that of their families. The condition has attracted significant attention in global health discussions. Due to the challenges of blood supply shortages, the high costs of iron chelation therapy, and hematopoietic stem cell transplantation (HSCT), TDT presents a serious health risk to patients and imposes a substantial burden on families and society. However, research on the health-related quality of life (HRQoL) of thalassemia patients in China remains limited. This study evaluated the factors affecting the HRQoL of these patients, with the goal of developing strategies to improve their quality of life.MethodsIn this cross-sectional study, children with TDT were recruited from five treatment centers in Guangxi, a province with a high prevalence of thalassemia in China. Structured questionnaires were employed to gather relevant data on sociodemographic variables, disease characteristics, treatments, and associated costs. The HRQoL was assessed using the Transfusion-Dependent Quality of Life (TranQoL) questionnaire, with a proxy version for patients aged 0–11 years and a child version for those aged 12–18 years.ResultsThe study included 418 participants, yielding an overall TranQoL score of 60.6 ± 16.3 among thalassemia patients. Multiple linear regression analysis revealed a negative correlation (P < 0.05) between overall TranQoL scores and several factors: increasing patient age, the presence of multiple thalassemia patients within a family, and undergoing HSCT. Conversely, adherence to regular treatment was positively correlated with higher TranQoL scores (P < 0.05).ConclusionThe study demonstrates that HRQoL among Chinese patients with TDT is at a low level. Age, treatment adherence, family support, and socioeconomic status were identified as key determinants influencing HRQoL. It is essential to further enhance and optimize health insurance policies and medical services to support comprehensive treatment strategies for these patients.

An Analysis of Students’ Lack of Interest in Learning English at VII Grade Students in SMPS IT Darul Ihsan

This study analyzes the factors contributing to seventh-grade students' lack of interest in learning English at SMPS IT Balik Batang. The objective is to identify and evaluate internal and external factors affecting students' motivation and engagement. This is the kind of mixed method research. The data were collected through questionnaires and interviews with 37 students, examining aspects such as physical conditions, psychological readiness, family support, and classroom environment. The results of the internal factor indicate that 89.19% of students found English difficult to understand due to issues such as pronunciation challenges and unclear explanations from teachers. Furthermore, in the external factors, 86.48% of students reported that distractions from peers significantly impacted their ability to focus during lessons. The study concludes that addressing these factors through improved teaching methodologies and effective classroom management can enhance students' interest and performance in learning English. It emphasizes the importance of tailored educational strategies to meet the specific needs of students.