Family Perspective Research Articles

Reflections From School Communities in Underserved Populations on Childhood COVID-19 Vaccination.

Outbreaks in vaccine-preventable diseases among children have increased, primarily among under- or unvaccinated subgroups. The influence and interaction of a child's school community on parental health care decisions, such as vaccination, has not been explored. Our study examined childhood coronavirus disease 2019 (COVID-19) vaccine hesitancy within the context of school communities. This study combines data from 4 independent research studies funded by the National Institutes of Health Rapid Acceleration of Diagnostics Underserved Populations Return to School Initiative. We examined focus group data to better understand the apprehension surrounding parental and child COVID-19 vaccination among underserved school populations. Across all study sites, 7 main themes emerged with regard to COVID-19-related vaccination concerns for children: (1) potential side effects, (2) vaccine development, (3) misinformation (subthemes: content of vaccine and negative intent of the vaccine), (4) vaccine effectiveness, (5) timing of vaccine administration/availability for children, (6) fear of needles, and (7) mistrust. School settings offered unique access to youth and family perspectives in underserved communities. Our studies highlighted several factors contributing to COVID-19 vaccine hesitancy in school communities, which align with existing literature on vaccine hesitancy. These concerns centered primarily on potential harm of vaccines, as well as misinformation, mistrust, and timing of vaccines. Related recommendations for increasing vaccination rates are provided. Developing specific strategies that address parent and child concerns will be critical to reducing health inequities related to COVID-19 vaccination.

What do healthcare staff think about the quality and safety of care provided to children and young people with an intellectual disability? A qualitative study using the framework method of analysis

ObjectiveTo elicit patient safety issues pertaining to children and young people with intellectual disability in hospital from healthcare staff perspectives. This follows a previous paper of parent interviews of patient...

Life After Brain Injury: Survivor & Family Perspectives

Abstract Date Presented 04/21/2023 This qualitative research examined brain injury survivors’ (BISs’) and family members’ lifelong occupational engagement impacts. When OT is truly occupation, client, and family centered, we must consider occupational engagement long term and in context. Primary Author and Speaker: Miguel-Alfonso Regidor Additional Authors and Speakers: Haleli Moalem, Gary Eng, Brandon Duenas Contributing Authors: Laura GREISS Hess

The Experiences of the Families of People With Aphasia About the Barriers and Facilitators of Receiving Speech Therapy Services in Iran

Objective Aphasia is an acquired language disorder that can affect all representations of language (comprehension, expression, reading, and writing). This disorder is a communication disability that has a long-term effect on various aspects of the life of people with aphasia and their families. The most common cause of aphasia is stroke. The prevalence of this disorder is increasing in Iran. The evidence shows that the factors affecting the provision of speech therapy services to people with aphasia are different in various countries. Therefore, this study aimed to determine the barriers and facilitators of receiving speech therapy services from the perspective of the families of these people in Iran. Materials & Methods The study was conducted qualitatively with a content analysis approach. In this study, individual, semi-structured interviews with open-ended questions were conducted with 12 families of people with aphasia. Interviews were conducted by voice calls through WhatsApp or phone calls. Data analysis was done by Burnard’s approach. The duration of interviews with families was 25 minutes on average. Results Barriers to receiving speech therapy services from the perspective of families of people with aphasia were divided into five categories and twelve subcategories, and facilitators of receiving services were divided into five categories and thirteen subcategories. There was an overlap between the identified barriers and facilitators, so the titles of the categories were the same and included: factors affecting clients’ attendance in speech therapy sessions, factors related to the patient, factors related to the place of treatment, factors related to the family, and factors related to speech therapist. All the participants pointed out a barrier and a facilitator related to the category of factors affecting clients’ attendance in speech therapy sessions. Also, all of them found a barrier related to the patient and a facilitator related to the family to be effective in receiving speech therapy services. Conclusion By examining the factors extracted from the interviewees, it is possible to make the necessary plans to reduce the barriers and strengthen facilitators with the help of people who have responsibilities in this field. Most of the participants considered the high severity of the impairment a barrier to receiving treatment. All of them agreed that the existence of a source to inform about speech therapy services has facilitated receiving these services. By considering the barriers and facilitators, people with aphasia and their families can receive more appropriate treatment according to their conditions and their quality of life will increase.

Everyday Health Management: Perspectives of Families Living in Permanent Supportive Housing

Abstract Date Presented 04/23/2023 This qualitative study explores the current strategies parents living in supportive housing use to manage their mental and physical health, the impact parenting has on health management, and how parents’ control affects their motivation. Primary Author and Speaker: Rose Digiulio Contributing Authors: Laura Vanpuymbrouck

Exploring Parents' Perceptions of an Early Intervention for Toddlers With Autism

Early intervention (EI) services are intended to be delivered in a family-centered manner. Thus, it is important to obtain family perspectives as they relate to implementation experiences in EI. Using an implementation science framework to guide the questioning. Twelve interviews were conducted with parents who participated in 1 EI program to explore their perceptions of challenges and successes around the intervention practice components, parent coaching processes, and contextual factors in which the intervention was delivered. Parents perceived many of the aspects of the intervention such as specific strategies, strong relationships with their interventionists, and intervention delivery in home and clinic settings as useful and beneficial. They reported challenges related to embedding the intervention into daily activities, feelings of discomfort when practicing intervention strategies, and struggles with scheduling sessions. Implications for research and practice are discussed.

Exploring the Link between Family Health and Health Literacy among College Students: The Mediating Role of Psychological Resilience

Enhancing health literacy is of the utmost importance to enhance the physical and mental well-being of college students. Unfortunately, there has been limited research investigating the means of improving college students’ health literacy through the perspective of families. Family health is an interdisciplinary and complex concept that involves multiple factors, and it provides a holistic perspective on the overall well-being of the family unit. Thus, this study aims to examine the relationship between family health and health literacy and scrutinize the mediating role of psychological resilience. A valid sample of 5473 students was collected from a university in November–December 2022 and was assessed using regression analysis. The findings reveal that family health has a positive association with the health literacy of college students (β = 0.56, p < 0.001), with psychological resilience playing a critical mediating role (β = 0.11, 95% CI: [0.09, 0.13]). Therefore, the family ought to be recognized as a fundamental mechanism to enhance college students’ health literacy. Additionally, it is essential to emphasize the amelioration of psychological distress among college students and enhance their psychological resilience, which will be helpful for their overall health consciousness and proficiency.

Is Our Newborn Screening Working Well? A Literature Review of Quality Requirements for Newborn Blood Spot Screening (NBS) Infrastructure and Procedures.

Newborn screening using dried blood spots (NBS) is widely acknowledged as a highly successful procedure in secondary prevention. For a number of congenital disorders, severe disability or death are impressively prevented by early detection and early treatment through NBS. However, as with any other screening, NBS can also cause harm, and the principle that "the overall benefits of screening should outweigh the harms" must be considered when introducing and implementing NBS programmes. This publication compiles the results of a systematic literature research on requirements for NBS infrastructure and procedures which was conducted as part of a research project on the quality and shortcomings of the NBS pathway in Germany. The compilation contains the requirements and recommendations for realising the principle of "maximise benefits and minimise harms" in relevant NBS pathway components such as parental education and information, coverage, timeliness, laboratory quality assurance, follow-up of abnormal results, confirmatory diagnostics, documentation, and evaluation. The results reflect the complexity of NBS infrastructure, and thus, they illustrate the importance of considering and implementing NBS as a well-coordinated public health programme with continuous quality management. Special attention should be paid to the perspectives of parents and families. Some NBS issues can substantially benefit from digital instruments or international cooperation. The literature review presented here has contributed to a concept of proposals for the advancement of NBS in Germany, and despite different settings, it may as well be of interest for other countries to achieve the best possible course and outcome of NBS for each child.

Family perspectives on the transition from active treatment to survivorship for children with cancer.

Completing therapy for childhood cancer is an exciting milestone. However, this adjustment can be extremely stressful for patients and their families as they transition from cancer patient to survivor. A better understanding of the patient and family experience and their needs during this transition is crucial for developing guidelines and leveraging support for future patients and families. Participants were recruited from across the United States using a maximum variation sampling strategy. Families were eligible if they had a child diagnosed with cancer before age 15 and had completed treatment at least 1year prior to their interview. Participants completed a 90-180-minute semi-structured interview either in person or virtually. Interviews focused on the experiences of getting a diagnosis, experiences with treatment, information seeking, impact of cancer on the family, social support, and transitions to survivorship. Inductive thematic analysis revealed a wide variety of themes. This paper examines the transition from active cancer therapy into survivorship. Identified primary themes included (i) feelings about transitioning off therapy; (ii) coping with lingering effects; and (iii) experiences of transitioning off therapy and survivorship care. Subthemes highlighted the need for more support for both patients and families during this transition. Patients and families desire more support during the transition off therapy. Suggestions included access to additional resources, earlier transition to receiving survivorship care, and more holistic survivorship care. Further research is needed to determine best models and feasibility of delivering this desired support to all patients and families.

Impact of COVID-19 on child welfare practice and implications for future practice: perspectives from youth, family, frontline workers, and other professionals

ABSTRACT The COVID−19 pandemic has impacted child welfare practice and outcomes. This study examines the perspectives of families and professionals on child welfare practice during the COVID−19 pandemic. Qualitative data from feedback surveys and focus groups were used to provide a comprehensive examination of the concepts being explored. Results of this study suggested positive outcomes of virtual meetings and trainings and raised attention to delays in achieving permanency during the pandemic. This study will provide important implications for navigating social work best practices and strategies for addressing children and families’ needs to improve child welfare outcomes.

Family-Reflections.com: Creating a parent-to-parent web-based tool regarding pediatric home ventilation

BackgroundThe decision to initiate pediatric mechanical ventilation via tracheostomy (“home ventilation”) is complex and parents often desire information from other parents who have faced this decision. However, parent-to-parent communication is challenging as it is difficult to connect new families to experienced families in ways that optimize informed, balanced decision-making. ObjectiveCreate a parent-to-parent web-based tool to support decision-making about pediatric home ventilation. Patient involvementThe tool was created based on interviews and feedback from parents. MethodsWe interviewed parents who previously chose for, or against, home ventilation for their child. Interview themes and family comments guided website development. Viewer feedback was solicited via an embedded survey in the tool. ResultsWe created 6 composite character families to communicate 6 themes about home ventilation: 1) Considering treatment options, 2) Talking with medical team, 3) Impact on life at home, 4) Impact on relationships, 5) Experience for the child, and 6) If the child’s life is short. Nine families who reviewed the draft tool felt it would have helped with their decision about home ventilation. Specifically, it supported families in thinking through what was “most important about their child’s breathing problems” (7 of 9 parents) and feeling “more at peace with the decision” (8 of 9 parents). Between 6/1/20–12/31/22, nearly 5500 viewers have accessed the tool and 56 viewers completed the survey (including 13 families and 39 clinicians). Feedback from experienced families and clinicians reported the tool taught them something new. DiscussionThis novel parent-to-parent tool shows promise for expanding access to balanced, family-centered information about pediatric home ventilation. Practical valueThe diverse stories and decisions let parents access multiple family perspectives. The tool’s focus is on family-centric information that parents reported was usually missing from clinician counseling. FundingThis work was supported by the National Palliative Care Research Center.

Provider and Caregiver Perspectives on Telehealth Assessments for Autism Spectrum Disorder in Young Children: A Multimethod DBPNet Study Exploring Equity.

Telehealth uptake increased dramatically during the COVID-19 pandemic, including for autism spectrum disorder (ASD) assessment by developmental-behavioral pediatric (DBP) clinicians. However, little is known about the acceptability of telehealth or its impact on equity in DBP care. Engage providers and caregivers to glean their perspectives on the use of telehealth for ASD assessment in young children, exploring acceptability, benefits, concerns, and its potential role in ameliorating or exacerbating disparities in access to and quality of DBP care. This multimethod study used surveys and semistructured interviews to describe provider and family perspectives around the use of telehealth in DBP evaluation of children younger than 5 years with possible ASD between 3/2020 and 12/2021. Surveys were completed by 13 DBP clinicians and 22 caregivers. Semistructured interviews with 12 DBP clinicians and 14 caregivers were conducted, transcribed, coded, and analyzed thematically. Acceptance of and satisfaction with telehealth for ASD assessments in DBP were high for clinicians and most caregivers. Pros and cons concerning assessment quality and access to care were noted. Providers raised concerns about equity of telehealth access, particularly for families with a preferred language other than English. This study's results can inform the adoption of telehealth in DBP in an equitable manner beyond the pandemic. DBP providers and families desire the ability to choose telehealth care for different assessment components. Unique factors related to performing observational assessments of young children with developmental and behavioral concerns make telehealth particularly well-suited for DBP care.

Barriers to Pediatric Palliative Care: Trainee and Faculty Perspectives Across Two Academic Centers.

Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers to palliative care across two pediatric centers to (1) examine differences between trainees and faculty and (2) compare these data with previous studies. Methods: A mixed-methods study was conducted in fall 2021 among pediatric trainees and faculty physicians at three pediatric hospitals in two pediatric centers in the western United States. Surveys were distributed through hospital listservs and analyzed descriptively and through inductive thematic analysis. Results: There were a total of 268 participants: 50 trainees and 218 faculty physicians. Of the trainees, 46% (23) were fellows and 54% (27) were pediatric residents. Trainees and faculty reported the same four most common barriers, which were consistent with previous studies: family not ready to acknowledge an incurable condition (64% trainees and 45% faculty); family preference for more life-sustaining therapies than staff (52% and 39%); uncertain prognosis (48% and 38%); and parent discomfort with possibility of hastening death (44% and 30%). Other barriers commonly reported included time constraints, staff shortages, and conflict among family about treatment goals. Language barriers and cultural differences were also cited. Conclusions: This study examining palliative care across two pediatric centers suggests that providers' perceptions of family preferences and understanding of illness persist as barriers to the delivery of pediatric palliative care services. Future research should examine family-centered and culturally mindful interventions to better elucidate family perspectives on their child's illness to align care.

Promoting global ECD top‐down and bottom‐up

AbstractEarly childhood science and intervention (ECSI) or simply early childhood development (ECD) is now a multi‐billion‐dollar industry that seeks to export one form of family model, parenting practices, and perspective of child development to the rest of the world. This practice occurs through the efforts of agencies such as the World Health Organization, United Nations Children's Fund, the World Bank Group, and the LEGO Foundation. As a result, Gabriel Scheidecker and colleagues (2023) are justified to characterize ECSI as global ECD that seeks to improve the brains of children in the majority world to break the vicious cycle of poverty. I complement Scheidecker et al.’s (2023) arguments by highlighting a key link that sustains global ECD—the academics and practitioners from the majority world who, knowingly or unknowingly, perpetuate this practice. In this commentary, I discuss why and how such academics and practitioners contribute to the practice of global ECD.

All hands on deck: exploring how Latinx families in California supported child learning during the initial Covid-19 shutdown

ABSTRACT This study focuses on family perspectives of school and home-based learning during the early months of the Covid-19 pandemic, revealing both what is lost and gained as a result of families being more intimately involved in the academic training of their children. Through the use of qualitative interviews, researchers found that parents (1) addressed challenges related to virtual learning on their own, (2) actively guided their children’s learning journeys and (3) engaged in collective efforts to ensure the well-being of their children. These findings suggest that as the school systems responded to the pandemic and home became a site of academic learning, the home also became a site of everyday ingenuity as parents applied a kind of pedagogical improvisation and accessed funds of knowledge to design learning spaces and scheduling frameworks.

Throwback, trials, and triumphs: stories of unmarried retired Filipina Public School teachers

Background: Globally, there is an apparent demographic movement toward an aging population. This poses difficulties, especially for retired public school teachers who are single. Additionally, the researcher, who has spent years offering psychosocial services to clients, is aware of this group's susceptibility to aging-related difficulties that may jeopardize their well-being.
 Methods: A qualitative-phenomenological approach was adopted. In-depth semi-structured interviews were conducted with 6 participants aged 60 to 80, unmarried retired public school teachers. Employing thematic analysis, interview transcripts were analyzed for themes to organize the data.
 Results: Four major themes emerged: (1) Embracing a Positive Emotional State, with Sub-themes (a) Awakening of reality being single for life, (b) Maintaining a smooth interpersonal relationship, (c)Achieving a sense of meaning, (2) Confronting the challenges with Sub-themes (a) Dependency of family members (b)Managing financial needs (c) Coming to terms with death (3) Coping With Life Eventualities with Sub-themes (a) Staying productive (b) Participating in Civic and Religious Organizations (c) Connecting with God (4) Breaking stereotypes about being a spinster teacher and ageism.
 Conclusion: Aging vulnerabilities can particularly challenge those who live without a spouse. However, having a hopeful, positive attitude about the future helps the unmarried remain motivated to cope with life. Ultimately, this will bring the elderly to resiliency and acceptance. Their experiences can add to a growing study in developmental psychology and personality that looks at how life accounts reveal the inherent aspects of lived human experience. The outcome of the past, the wisdom behind the trials, and the success stories of the life of participants were essential for understanding the strategies they use to manage age and aging-related challenges and age successfully.
 Limitations of the findings: The scope was limited to Northern Negros area while the number of participants in this study was within the acceptable range of six (6). The participants were all female and all were teachers from the public school system. Thus, the findings are not conclusive, and this limitation made it difficult to explore their experiences within the broader context of their lives.
 Direction for Future Research: Future research can be built upon the results that were acquired in this study. Further research could also be done on effective preventative and therapeutic strategies for elderly single people. It is advised to conduct additional research using more extensive samples of this demographic that is to include single male retired public and private school teachers. A longitudinal study might provide a more comprehensive and in-depth view of aging and spinsterhood. Examining the extended family's perspectives, other professions, and the larger population is an aspect that could help broaden and deepen the understanding of the experiences of single and retired teachers.
 Practical Value of the Paper: The findings will serve as baseline data for improving interventions and programs of DepEd and OSCA, which must concentrate on offering practical assistance, like psychosocial services and a solution for social acceptance, to eradicate stigma. Mental health professionals must have knowledge and guidance on how to facilitate the well-being of the elderly and enhance their quality of life as they age.

The 21st Century Cures Act: Inpatient Clinician Perceptions of Changes to Information Sharing at an Academic Medical Center.

Introduction To comply with the Information Blocking Rule in the 21st Century Cures Act, many hospitals began to release inpatient electronic health information such as clinical notes and results to patients immediately, starting in April 2021. We sought to understand the perceptions of hospital-based clinicians regarding the impact of these changes in information sharing on clinicians and patients. Materials and methods We developed and distributed an electronic survey to 122 inpatient attending physicians, resident physicians, and physician assistants within the internal medicine and family medicine departments at an academic medical center. The survey asked clinicians to rate their comfort with information-sharing protocols and describe their perceptions of the impact of immediate information sharing on their documentation habits and patient interactions following the implementation of the Cures Act. Results The survey response rate was 37.7% (46/122). Of the respondents, 56.5% felt comfortable with the note-sharing process, 84.8% reported omitting specific information from their notes to prevent patients from reading it, and 39.1% of clinicians agreed that patients have found clinical notes "more confusing than helpful." Conclusions Immediate sharing of electronic health information has the potential to be a powerful tool for communicating with hospitalized patients. However, our results show many hospital-based clinicians report limited comfort with the note-sharing process and perceive it to be confusing to patients. Efforts are needed to educate clinicians regarding information sharing, understand patient and family perspectives, and develop best practices to enhance communication through electronic notes.

Emergency service perspective of families with children who have neurodevelopmental diseases

Introduction: It is known that children with neurodevelopmental diseases have frequent traumas like falling and apply to emergency department which significantly affects patient and family. Our aim is to examine the families' view and the problems encountered in emergency services by examining their answers to questionnaire.
 Method: This study was designed retrospectively. Patients registered in Department of Autism, Mental Special Needs and Rare Diseases as families with children who have neurodevelopmental diseases included in the study. 324 families’ survey with 12 open-ended questions evaluated in terms of distribution and frequencies with descriptive statistical methods.
 Results: By analyzing the data obtained the findings of the research were gathered under 12 main themes and 80 sub-themes. 313 (89.9%) were diagnosed with Down Syndrome, 9 (2.5%) with Angelman Syndrome, 7 (2.02%) with intellectual disability, and 5 (1.4%) with Autism. 34.2% of the children were 0-3 years old, 28.7% were 3-6 years old, 20.9% were 6-10 years old. Emergency services were used in "all cases where urgent intervention is required" (70%), and in cases where “an outpatient appointment couldn’t made" (10.8%)
 Conclusion: It would be beneficial to examine children with neurodevelopmental diseases in an understanding and patient manner, using a plain and understandable language, in a quiet environment in emergency room. To solve these patient’s problems, awareness training of healthcare professionals, having separate examination and observation room, ensuring accessibility and arranging the room with necessary medical supplies and equipment should be made.

Using Evidence-Based Practice in the Transition to Telepractice: Case Study of a Complexity-Based Speech Sound Intervention

Purpose: Speech-language pathologists (SLPs) are tasked with integrating the principles of evidence-based practice (EBP) to provide effective and efficient assessment and intervention services that best support clients and their families. As new research, technologies, and perspectives emerge, SLPs are required to adapt their clinical practices to meet these changes while maintaining high-quality evidence-based services. Through an illustrative case study, we aim to demonstrate the process of applying EBP principles—including research evidence, client and family perspectives, and clinical expertise—to a complexity-based speech sound intervention delivered via telepractice. Conclusions: Results of the case study suggest that utilizing the principles of EBP to transition an evidence-based complexity intervention to telepractice was successful. Additionally, the EBP framework provided opportunities for reflection and continued adaptation throughout the intervention. The process of applying an EBP framework to a quickly evolving clinical practice environment provides SLPs with essential tools that ensure their services meet the needs of the clients they serve.

Enhancing palliative care at home: a generalist community nursing case study

Objective: This quality improvement project aimed to explore the experience of home care nurse managers implementing a general palliative approach to care. Implementation comprised several interlinking activities encompassing stakeholder engagement and an education program in the outer eastern region of a home care and nursing organisation in Melbourne, Australia, between September 2019 and December 2020. Background: High quality provision of community based palliative and end-of-life care means people are much more likely to die at home, supported by family, friends and services. To achieve this, care staff must be adequately trained and supported, alongside a collaborative approach with other generalist and specialist providers. Study design and methods: This Case Study reports on the participant perspectives of the stakeholder engagement and education program. Focus groups and an interview were used to elucidate the experience of nursing and allied health professionals providing a general palliative approach in the community. The 2006 National Institute of Clinical Studies framework to identify barriers to best practice healthcare guided the development of focus group questions and the deductive analysis of data. Results: Seven Nursing Care Managers and one Social Worker participated in two online focus groups and one interview. Three overarching themes highlighted the value of tailored education in increasing staff knowledge and confidence, the factors for a successful generalist-specialist partnership, and the unique nature of the home care setting which requires accessible systems and processes. Discussion: This project supports assertions that generalist services can play a valuable role when a palliative approach to care is incorporated. It also underscores the importance of collaborative working partnerships between generalist and specialist services in providing quality community-based palliative care. Future research should examine the needs and perspective of clients, carers and families receiving a general palliative care approach in the community. Implications for research, policy and practice: Investment in developing the capacity and capability of generalist service staff to deliver palliative care is vital, particularly when caring for people in their homes. Although small, this study demonstrates that consideration should be given to embedding staff with specialist palliative care training within generalist organisations to drive and champion evidence-based palliative care provision, training, policies and procedures that meet the unique needs of mobile workforces. Future research should examine the effectiveness of different models and methods for education and generalist-specialist partnerships that meet the needs of mobile home nurses, particularly regarding long-term impact and sustainability. What is already known about the topic? Most Australians prefer to be cared for and die in their own home. Home care nurses are key generalist health professionals who support community-based palliative and end-of-life care, organising and providing care, coordinating the input of other health and social care professionals. Home care nurses face challenges in meeting their clients’ palliative care needs (such as symptom management and communication) and have deficits in their knowledge and confidence of caring for palliative clients. What this paper adds: This case study demonstrated that facilitating ongoing education opportunities that draw on the expertise of local palliative care champions or internal specialists can enhance care provision. Nurse care managers believe the value of generalist services, particularly home care services, in the generalist-specialist palliative care partnership, needs to be understood and respected. Tailored investment in home care to provide a general palliative approach would be beneficial given the unique challenges of this mobile workforce.