Family Perspective Research Articles

The Path to Growth and Maturity for Young Students: Embracing Independence and Self- Reliance

Young students are the future of our country and the hope of our nation. The healthy growth of young students must rely on independence and self-reliance. From the perspectives of family, society, and school, this article explores the cultivation of young students’ spirit of independence and self-reliance, which should be grasped from three aspects: recognizing the situation, identifying the reasons, and taking effective measures.

Measuring Pectus Excavatum Severity, External Caliper, or Cross-Sectional Imaging: Family Perceptions

IntroductionPatients with pectus excavatum (PE) often undergo cross-sectional imaging (CSI) to quantify severity for insurance authorization before surgical repair. The modified percent depth (MPD), an external caliper-based metric, was previously validated to be similar to the pectus index and correction index. This study explored family perceptions of CSI and MPD with respect to value and costs. MethodsThis is a cross-sectional survey study including families of patients enrolled in an ongoing prospective multicenter study evaluating the use of MPD as an alternative to CSI for quantifying PE severity. Families of PE patients who underwent both MPD and CSI completed a survey to determine their perceptions of MPD and costs of CSI. Responses were described and associations were evaluated using chi squared, Wilcoxon rank-sum test and logistic regression as appropriate. Statistical significance was set to 0.05. ResultsThere were 136 surveys completed for a response rate of 88%. Respondents were confident in MPD (86%) and confident in its similarity to CSI (76%). Families of females were less confident in the measurements than males (55% versus 80%, P = 0.02; odds ratio 0.30 (0.11, 0.83). Obtaining CSI required time off work/school in 90% and a copay in 60%. Nearly half (49%) of respondents reported CSI was a time/financial hardship. Increasing copay led to decreased reassurance in CSI (55%: copay > $100 versus 77%: lower copay/75%: no copay; P = 0.04). ConclusionsFrom the family perspective, MPD is valuable in assessing the severity of PE. Obtaining CSI was financially burdensome, particularly for those with higher copays. MPD measurements provide high value at low cost in assessing the severity of PE.

Hospital management and challenges during COVID-19 outbreaks: lessons from a level 1 hospital in the southeast of Iran-case study

BackgroundThe COVID-19 pandemic has presented unparalleled challenges to hospitals globally, particularly those in resource-limited settings. This case study elucidates the experiences and lessons from managing a 40-bed public hospital in Rask, Iran, during the pandemic.MethodsData were gathered through focus group discussions with the management team and key informants, supplemented by document analysis. Thematic analysis was employed to discern key themes and subthemes related to the challenges encountered and solutions implemented by the hospital.ResultsThe study underscores the necessity of a dynamic management team, effective external stakeholder communication, staff involvement in decision-making, and establishing connections with pre-hospital care units. It also emphasizes the need for adaptable protocols, comprehensive staff training, and infrastructure enhancements. Despite these strategies, the hospital grappled with unresolved issues such as inadequate disaster planning, ethical dilemmas, and poor inter-hospital coordination.ConclusionThis case study offers insights into managing a small hospital in a resource-limited setting during a health crisis, highlighting the importance of effective leadership, staff support, infrastructural flexibility, and community engagement. The lessons gleaned can guide the development of context-specific strategies to bolster the resilience and preparedness of similar hospitals. Further research is warranted to assess the long-term impacts of the pandemic on these hospitals and to explore the perspectives of frontline staff, patients, and families for a more comprehensive understanding of effective hospital management during health disasters.

Im/migration, mental health and well-being, and newcomer Filipino families: implications for anti-racist and anti-oppressive policies and practice

ABSTRACT This article draws upon the perspectives of newcomer Filipino families who have migrated through the global domestic work industry, specifically through Canada's Live-in/Caregiver Program (L/CP), and the perspectives of Filipino social service providers in Toronto, Ontario, Canada. I examine how newcomer Filipino families make meaning of, and negotiate, the impact of family separation and reunification through the L/CP on their mental health and well-being. Moreover, I look at how Filipino social service providers center the experiences of newcomer Filipino families within service provision through an anti-racist and anti-oppressive framework, which has implications for policies and praxis in community-based agencies. The paper moves from deficit-focused experiences of ‘trauma’ to centring the voices of newcomer Filipino families as agents of change, in collaboration with Filipino social service providers. This shift illuminates how newcomer Filipino families and their lived experiences are sites of transformation in the policy and practices that impact their mental health and well-being.

Attitudes towards the sexuality of adults with intellectual disabilities: Family, staff, community and student perspectives.

Background: The sexual expression of adults with intellectual disabilities can be hindered by negative attitudes towards their sexuality. This study aims to examine current attitudes of staff, family, community and students towards the sexuality of adults with intellectual disabilities and how sociodemographic variables may influence these attitudes. Methods: 305 participants completed an online questionnaire, including the ASEXID scale. Results: Scores were highest for the normalising attitude and lowest for the negative attitude, with intermediate scores for the paternalistic attitude. Staff and university students exhibited a more normalising attitude than families and community. Community participants exhibited a more negative attitude than staff and students. Older age was associated with less normalising and more paternalistic attitudes. Being male with a more negative attitude. Discussion: These findings should be taken into account by professionals. Intermediate scores on the paternalistic attitude may mediate difficulties in supporting adults with intellectual disabilities in their sexuality.

Exploring Environmental Considerations for Terminally Ill Pediatric Patients in Palliative Care Inpatient Units: A Narrative Review.

Background: The end-of-life experience is significantly influenced by the surrounding environment, emphasizing the importance of exploring built environmental factors in palliative care, especially for pediatric patients. As the majority of end-of-life individuals are elderly or adults, most studies have focused on the environment for this demographic. However, it is essential to recognize that children and adolescents may have distinct needs in this regard. Aim: This narrative review aims to explore the impact of the built environment on pediatric end-of-life patients in inpatient units within palliative care settings. Method: A comprehensive search was conducted across four key databases (PubMed, MEDLINE, PsycINFO, and CINAHL) to identify relevant articles. The screening process commenced with an initial assessment of article titles and abstracts, followed by a thorough examination of full-text studies that met the inclusion criteria. Data synthesis involved thematic analysis facilitated by NVIVO software and informed by the findings extracted from selected literature. Results: The review identified 22 studies meeting inclusion criteria, revealing key insights into environmental considerations in pediatric palliative care. Four themes emerged, highlighting the significance of activities and play environments, accommodation spaces for patients, supportive spaces for families, and outdoor and green spaces. Conclusions: Acknowledging limited research on architectural aspects and reliance on family and staff perspectives, future studies should prioritize understanding pediatric patients' perspectives, particularly adolescents. The study underscores the importance of enhancing environmental design in pediatric palliative care to meet the unique needs of patients and their families.

Evaluation of telehealth in delivering diagnostic developmental assessments for children in South Western Sydney during the COVID-19 pandemic: Clinician and family perspectives.

Children with neuro-developmental disorders faced significant challenges in accessing services during the COVID-19 pandemic. Telehealth has been adopted by health services globally to facilitate access to clinical services. Our aims were to evaluate the utility of the telehealth modality for providing developmental assessment services and explore enablers and barriers to using telehealth, in a culturally diverse and socioeconomically disadvantaged population in Sydney. We reviewed telehealth developmental assessments in South Western Sydney conducted between 1 April and 30 June 2020. Data were collated on demographics; telehealth modality; diagnostic formulation; recommendations; and requested follow up. We conducted retrospective semi-structured telephone interviews with 79 families and 11 clinicians about their telehealth experience. Thematic analysis was carried out on the open text responses. Of 205 children assessed across six sites, median age was 48 months; 45% were assessed with video and 55% with telephone only. Diagnostic formulation and therapeutic recommendations were provided for 203 (99%) children and 138 (67%) were asked to come for face-to-face follow-up. The majority of families (76%) were satisfied or extremely satisfied with telehealth. Median clinician satisfaction was 3.5 out of 5, whilst clinician confidence with diagnostic formulation was 4 out of 5. Qualitative data revealed a range of barriers and enablers. Telehealth was a successful modality for contributing to the assessment journey for children with neuro-developmental disorders in our culturally, linguistically and socioeconomically diverse clinical population in the context of a pandemic lockdown. We discuss the potential for telehealth modalities in child developmental assessments beyond the pandemic.

Family perspectives for young people growing up in child protection care

Family perspectives for young people growing up in child protection care

Strengthening open disclosure in maternity services in the English NHS: the DISCERN realist evaluation study.

There is a policy drive in NHS maternity services to improve open disclosure with harmed families and limited information on how better practice can be achieved. To identify critical factors for improving open disclosure from the perspectives of families, doctors, midwives and services and to produce actionable evidence for service improvement. A three-phased, qualitative study using realist methodology. Phase 1: two literature reviews: scoping review of post-2013 NHS policy and realist synthesis of initial programme theories for improvement; an interview study with national stakeholders in NHS maternity safety and families. Phase 2: in-depth ethnographic case studies within three NHS maternity services in England. Phase 3: interpretive forums with study participants. A patient and public involvement strategy underpinned all study phases. National recruitment (study phases 1 and 3); three English maternity services (study phase 2). We completed n = 142 interviews, including 27 with families; 93 hours of ethnographic observations, including 52 service and family meetings over 9 months; and interpretive forums with approximately 69 people, including 11 families. The policy review identified a shift from viewing injured families as passive recipients to active contributors of post-incident learning, but a lack of actionable guidance for improving family involvement. The realist synthesis found weak evidence of the effectiveness of open disclosure interventions in the international maternity literature, but some improvements with organisation-wide interventions. Recent evidence was predominantly from the United Kingdom. The research identified and explored five key mechanisms for open disclosure: meaningful acknowledgement of harm; involvement of those affected in reviews/investigations; support for families' own sense-making; psychological safely of skilled clinicians (doctors and midwives); and knowing that improvements to care have happened. The need for each family to make sense of the incident in their own terms is noted. The selective initiatives of some clinicians to be more open with some families is identified. The challenges of an adversarial medicolegal landscape and limited support for meeting incentivised targets is evidenced. Research was conducted after the pandemic, with exceptional pressure on services. Case-study ethnography was of three higher performing services: generalisation from case-study findings is limited. No observations of Health Safety Investigation Branch investigations were possible without researcher access. Family recruitment did not reflect population diversity with limited representation of non-white families, families with disabilities and other socially marginalised groups and disadvantaged groups. We identify the need for service-wide systems to ensure that injured families are positioned at the centre of post-incident events, ensure appropriate training and post-incident care of clinicians, and foster ongoing engagement with families beyond the individual efforts made by some clinicians for some families. The need for legislative revisions to promote openness with families across NHS organisations, and wider changes in organisational family engagement practices, is indicated. Examination of how far the study's findings apply to different English maternity services, and a wider rethinking of how family diversity can be encouraged in maternity services research. This study is registered as PROSPERO CRD42020164061. The study has been assessed following RAMESES realist guidelines. This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research Programme (NIHR award ref: 17/99/85) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 22. See the NIHR Funding and Awards website for further award information.

Recovery from Sepsis: Management beyond Acute Care.

Recovery from sepsis is a key global health issue, impacting 38 million sepsis survivors worldwide per year. Sepsis survivors face a wide range of physical, cognitive, and psychosocial sequelae. Readmissions to hospital following sepsis are an important driver of global healthcare utilization and cost. Family members of sepsis survivors also experience significant stressors related to their role as informal caregivers. Increasing recognition of the burdens of sepsis survivorship has led to the development of postsepsis recovery programs to better support survivors and their families, although optimal models of care remain uncertain. The goal of this article is to perform a narrative review of recovery from sepsis from the perspective of patients, families, and health systems.

“Racism Happens Every Day, All the Time”: Black Families’ Outpatient Experiences of Racism Across a Large Pediatric System

ObjectiveTo qualitatively understand and characterize the experience of racism in outpatient pediatric healthcare settings from the perspectives of Black families. MethodsWe conducted focus groups with parents or guardians of Black children, recruited from academic primary care offices at a single pediatric institution. Focus groups were facilitated virtually by Black team members using an open-ended, semi-structured focus group guide. We analyzed focus group transcripts using iterative, thematic, inductive open coding performed independently by trained coders, with final codes reached by group consensus. ResultsWe conducted 6 focus groups of 3 to 5 participants each and 1 individual interview, with 24 total parents. We identified the following themes: 1) “I just felt like we was a number”: Black families perceived experiences that felt impersonal and lacked empathy; 2) “Why is the doctor treating me like I don’t matter?”: Black families perceived experiences with poor care and worse treatment; 3) Black families experience racism across socioecological levels when interacting with pediatric health systems; 4) Positive perceived experiences can guide improvement; and 5) Improvement will require antiracist efforts across the levels of racism. ConclusionsIn this qualitative study, we found that Black families have had many poor pediatric experiences, perceive racism as affecting child health broadly across socioecological levels, and recommend a multidimensional antiracist approach to improvement. Our findings underscore the importance of elevating Black family voices in developing policies that prioritize antiracism and work to eliminate the harmful impacts of racism on child health.

Best Practices for Occupation Therapy Practitioners in Pediatric Telehealth

Abstract Date Presented 03/23/24 We used a mixed-methods design to gather OTP and pediatric family perspectives on effective occupational therapy telehealth interventions. Results suggest the importance of caregiver coaching and involvement, and clear communication from all parties. Primary Author and Speaker: Shain Davis Contributing Authors: Sarina Cass, Dina Marvizi, Elizabeth Stone

Tourette Syndrome: A Catalyst for Operationalizing Neurodiversity.

Our goal, taking Tourette syndrome as a case example, is to introduce neurologists to, and motivate discussion on, the neurodiversity paradigm. This philosophical construct considers some neurologic conditions in diversity, instead of simply disease. Moving from philosophical idea to empirical construct draws from patient and family perspectives on (1) quality of life and discrimination, (2) disability pride, and (3) unique profiles of different patient cohorts. Listening to patient voices, attending to family, advocacy group, and societal views on neurologic disorders can strengthen precision neurology practice. Dialogs on neurodiversity, including antitherapy sentiments, offer to enhance neurologic care, patient agency, and autonomy; encourage respectful communications with patients who challenge the idea their condition is pathologic; and to set the stage for future empirical investigations and practice guidelines.

Educator wellbeing and family engagement in Australian early learning settings: perspectives of early childhood educators and families

AbstractWhile the COVID-19 pandemic brought with it multiple challenges for families and the Early Childhood Education and Care (ECEC) workforce, it also highlighted the essential role of ECEC in the lives of children and families and presented unique opportunities for innovation and learning. The current study sought to explore learnings from this uniquely challenging period, including the factors and strategies that best supported educator wellbeing and family engagement in ECEC settings, from the perspectives of families, centre directors and educators. In 2021, 104 Centre Directors/Educators and 102 families completed online surveys exploring wellbeing and educator–family relationships. Correlations suggest that robust professional wellbeing and resilience are potential enabling factors for strong family engagement, and that supportive organisational structures in ECEC settings are a protective factor for both educator wellbeing and family engagement. In addition, five effective family engagement strategies were derived from the qualitative data: (1) drawing on personal and professional knowledges to enrich children’s learning at home; (2) prioritising regular and reliable communication with families; (3) maintaining familiar relationships and a sense of community; (4) providing person-centred support and a bridge to other services; and (5) nurturing mutually supportive educator–family relationships. Learnings provide important insights that may inform ongoing quality improvements across different ECEC contexts, and to help safeguard against the negative impacts of future global crises.

Listening to the Voices of Aboriginaland Torres Strait Islander Women in Regional and Remote Australia About Traumatic Brain Injury From Family Violence: A Qualitative Study.

Indigenous women experience high rates of family violence-related head injuries. At present, lived experience accounts from Indigenous women are absent, which results in incomplete understandings and inadequate responses that have detrimental impacts onthem and their families. The aim of this study was to gain insight into Indigenous women's personal and family perspectives regarding violence-related traumatic brain injury (TBI), including impacts on life, as well as decision-making processes about healthcare access and engagement. Purposeful sampling was used to complete semi-structured interviews with 18 Indigenous women living in regional and remote Australia who had experienced TBI from family violence. The data from these interviews were augmented by data from interviews and focus groups with 28 community members, including family members or carers of Indigenous women living with TBI from family violence. Three themes were conceptualised based on the data and research aims: interweaving of the past and the present-ways women experience brain injury; factors that inform decision-making to access healthcare; and managing everyday changes that result from TBI from family violence. Indigenous women described living with a range of symptoms following repeated head injuries including problems with memory, cognition and concentration. A range of strategies to manage long-term symptoms of TBI were used by Indigenous women and when they did seek healthcare, Indigenous women were required to navigate a range of barriers. The findings identify a range of gaps in healthcare and housing supports for Indigenous women with TBI from violence, highlighting the significant investment needed to develop responsive and appropriate pathways of care in regional and remote areas. A range of suggestions are discussed including development of a specialised workforce who can provide apppropriate follow-up support, co-designed concussion clinics and educational resources. TBI must also be a key aspect of policy and practice for services working with Indigenous women who have experienced violence to ensure appropriate responses are provided. Indigenouswomen shared their views and experiences of TBI from family violence as well as decision-making about accessing healthcare and managing TBI symptoms. As such, study participants provided public contributions to the research.

The Efforts of Couples with Blind Disabilities in Realizing the Sakinah Family Perspectives on the Hierarchy of Needs Theory: Case Study of Pertuni Malang Regency

The Efforts of Couples with Blind Disabilities in Realizing the Sakinah Family Perspectives on the Hierarchy of Needs Theory: Case Study of Pertuni Malang Regency

A Study of the Work-life Balance of Virudhunagar District's Teaching Professionals in the Arts and Science Colleges

The teaching staffs of the scientific and arts institutions in the Virudhunagar District participated in the study. This study aims to investigate the difficult obstacles respondents had in juggling their personal and work lives. The primary data for the study are used. Using the random sampling approach, 150 respondents made up the sample. This study has looked at the several elements that respondents' work-life balance is affected by. The goal of the current study is to comprehend the respondents' socioeconomic profile, opinions regarding their careers, work-life balance, and the factors that influence these factors as well as the results of work-life imbalances. The respondents' perspective of how work-life balance affects life happiness, as well as the effects of work-life balance on individuals psychological, social, familial, and environmental perspectives. The poll also aims to gauge respondents' attitudes toward managing work-life balance. The relevant hypotheses have been framed as the relational basis's focus in order to address the objectives. These hypotheses test whether there are significant differences among working women regarding their work-life balance issues, the impact of work-life balance, the outcome, and the method of managing work-life balance-related aspects. The relevant statistical tools that are used for this purpose include the Chi-Square test, ANOVA, correlation, Garrett Ranking Technique, and factor analysis.

Applying a User-Centered Design Framework to Develop a Remote Research Assessment Protocol for a Randomized Clinical Trial for Toddlers with Early Autism Characteristics.

COVID-19 required many research teams to shift from in-person to remote assessments, which posed both procedural and theoretical challenges. While research has explored the utility of remote assessments for autism diagnosis from the perspective of families and clinicians, less is known about their application in clinical trials. This paper describes the development of a remote research assessment protocol for a randomized clinical trial focusing on the implementation of reciprocal imitation teaching (RIT) with toddlers in Part C early intervention. This project spans two phases. For Phase 1, our team developed and documented a series of steps utilizing user-centered design (UCD) strategies (e.g., recruiting potential users, creating a prototype, engaging in iterative development) for the purpose of redesigning an assessment protocol for a remote environment. For Phase 2, we examined preliminary outcomes of the redesign process. Primary end users (assessors) rated post-redesign usability and acceptability, while acceptability was examined using attrition data from secondary end users (family participants). Preliminary fidelity of implementation was also examined. The iterative redesign process allowed the research team to refine aspects of the assessment that ultimately led to promising preliminary ratings of usability, acceptability, and feasibility, as well as high fidelity. Preliminary data suggest that the redesigned assessment appears to be an acceptable, feasible, and usable tool for autism clinical trial research and that assessors can use it with fidelity. Further research is needed to examine the reliability and validity of the assessment, as well as implementation characteristics on a larger scale.

Smoking cessation influencing factors and interventions in adolescents

Smoking can negatively influence the development of the respiratory and cardiovascular systems of adolescents and increase the risk for chronic diseases in adulthood. Promotion smoking cessation in adolescents is important for the protection of adolescent health and reduction of smoking rate in adults. Although many foreign studies have explored the influencing factors and interventions for smoking cessation in adolescents, limited relevant studies have been conducted in China, especially the study of smoking cessation intervention, which is still in its infancy, so the research and practice in this field need to be strengthened. This paper summarizes the factors associated with smoking cessation in adolescents both at home and abroad from the perspective of individual, family, school, and social surrounding, and introduce existing smoking cessation interventions for adolescents to provide references for future studies.

THE UNTOLD STORY OF HAVING A FAMILY MEMBER AS TERROR CONVICT: STUDY OF FAMILY HARDINESS & FAMILY PERSPECTIVE

Families with members charged for terrorism face immense challenges. This study aims to understand family hardiness and family perspective of families who have family members as terrorists convict. Using a phenomenological approach, we explore family perspectives and family hardiness in three informants (father,mother, older sister of a terror convict). The results of this study reveal that family develops family hardiness through the stages of shock and early adaptation, surrender and believe in God during the hard times, confidence in dealing with difficult circumstances, identifying challenges and formulating constructive attitudes, and working together as a unit to control difficult situations. We also found how one family and its internal communication can possibly become the fuel to form a positive perspective, and to strengthen the belief to move forward. These results imply family hardiness is formed as a whole by the process of how a family accepts the effects of difficult situations and works together as a unit to overcome it. We call for more attention to strengthening support for families, at both social and policy levels, because these actions and initiatives can help families with difficult situations, e.g. a family who has a member as a terrorist convict to cope and adapt successfully, preventing them from experiencing severe psychological burdens and depression as they possibly received stigma and social exclusion.