Family Perspective Research Articles

Service navigation and concrete supports from a family Perspective: A preventative and community-based approach to child welfare

The child welfare system in the United States has historically focused funding on intervening after child maltreatment has occurred, with fewer resources allocated to prevention. However, research has found that families benefit from concrete supports, like financial payments, and when families are provided with these supports, child welfare involvement significantly declines. Less is known about the impact of preventative approaches, such as service navigation, which could act as a bridge between families and essential concrete supports and resources. Additionally, it is vital to incorporate family voice into decisions being made regarding the development and evaluation of prevention programming. This qualitative study explores family experiences and outcomes with community-based service navigation. The sample included 12 family members working with a community navigator at the time of data collection. Data were obtained through focus groups and interviews held in English, Spanish, and Arabic. A thematic analysis guided the researchers in better understanding participants’ perspectives on service navigation. Results indicate that participants found preventative service navigation to be a supportive and collaborative experience through which they were connected with concrete supports and other essential resources. Five themes were identified: (1) normalizing the need for support; (2) time as a limited resource for families; (3) service navigation as empowering and humanizing for families; (4) service navigation poses new challenges for families; and (5) service navigation creates new opportunities for families. Results from this study suggest that service navigation may represent a more socially just intervention to ensure child safety, permanency, and well-being.

Capturing Home Care Information Management and Communication Processes Among Caregivers of Older Adults: Qualitative Study to Inform Technology Design.

The demand for complex home care is increasing with the growing aging population and the ongoing COVID-19 pandemic. Family and hired caregivers play a critical role in providing care for individuals with complex home care needs. However, there are significant gaps in research informing the design of complex home care technologies that consider the experiences of family and hired caregivers collectively. The objective of this study was to explore the health documentation and communication experiences of family and hired caregivers to inform the design and adoption of new technologies for complex home care. The research involved semistructured interviews with 15 caregivers, including family and hired caregivers, each of whom was caring for an older adult with complex medical needs in their home in Ontario, Canada. Due to COVID-19-related protection measures, the interviews were conducted via Teams (Microsoft Corp). The interview guide was informed by the cognitive work analysis framework, and the interview was conducted using storytelling principles of narrative medicine to enhance knowledge. Inductive thematic analysis was used to code the data and develop themes. Three main themes were developed. The first theme described how participants were continually updating the caregiver team, which captured how health information, including their communication motivations and intentions, was shared among family and hired caregiver participants. The subthemes included binder-based health documentation, digital health documentation, and communication practices beyond the binder. The second theme described how participants were learning to improve care and decision-making, which captured how they acted on information from various sources to provide care. The subthemes included developing expertise as a family caregiver and tailoring expertise as a hired caregiver. The third theme described how participants experienced conflicts within caregiver teams, which captured the different struggles arising from, and the causes of, breakdowns in communication and coordination between family and hired caregiver participants. The subthemes included 2-way communication and trusting the caregiver team. This study highlights the health information communication and coordination challenges and experiences that family and hired caregivers face in complex home care settings for older adults. Given the challenges of this work domain, there is an opportunity for appropriate digital technology design to improve complex home care. When designing complex home care technologies, it will be critical to include the overlapping and disparate perspectives of family and hired caregivers collectively providing home care for older adults with complex needs to support all caregivers in their vital roles.

Aphasia and acute care: a qualitative study of family perspectives

ABSTRACT Background The early acute phase of hospitalization after the onset of aphasia is typically a challenging and stressful time for caregivers and family members of people with aphasia. During this time, it is particularly important to provide support and relevant information to family to reduce psychological distress and increase the likelihood of longer-term positive outcomes. However, families of people with aphasia often report a lack of support and information within the acute care setting and a generally negative experience. Aims To gather information and insights into the acute care experiences of families of people with aphasia as an early step in a larger project. The larger project was designed to improve the acute care experience for people with aphasia, families, and healthcare staff in a community teaching hospital. Methods A qualitative investigation including text-based questionnaires and in-person focus groups was conducted with 16 family members of people with aphasia. Thematic analysis was completed to identify experiences in early acute care. An additional 7 family members served as “checkers” to validate that the derived themes were consistent with their own experiences during acute hospitalization of their family member with aphasia. Results Six themes were identified that described shared experiences of the participants. The themes (drawing from quotes of participants) include: “At first it’s just survival”; “There’s nothing for the family”; “They did not use the word aphasia at the beginning”; “They did not give me any information about it [how to communicate]”; “They did not really communicate with him [the person with aphasia]”; “They do not want to give you hope”. The themes were endorsed by the family checkers. Conclusions This initial phase of a larger project found that participating families of people with aphasia were not given sufficient support or information, contributing to a largely negative experience of the early acute phase of care.

Understanding experiences and perspectives in addressing unmet social needs of children and families in a paediatric weight management program: a qualitative descriptive study

ObjectiveThe objective is to describe the experiences and perceptions of caregivers who participated in a community systems navigator intervention that addressed unmet social needs.Design, setting and patientsA qualitative descriptive study...

The Impact of the New Families Home Visiting Program on Depressive Symptoms Among Norwegian Fathers Postpartum: A Nonrandomized Controlled Study.

Becoming a parent is a vulnerable life transition and may affect parents' mental health. Depressive symptoms may occur in fathers, as well as mothers, during pregnancy and the postpartum period. The health service is expected to have a family perspective, aiming to support both parents. Despite this goal, mothers traditionally receive more support than fathers. Home visiting programs may provide enhanced guidance for new fathers and increased mental health support. The aim of this study was therefore to assess possible differences in level of depressive symptom in fathers receiving the New Families home visiting program compared with those receiving standard care from the Norwegian Child Health Service. A prospective nonrandomized controlled study with a parallel group design was performed. The Edinburg Postnatal Depression Scale (EPDS) was used to measure depressive symptoms in fathers (N = 197) at 28 weeks of their partners' pregnancy (T1), at 6 weeks (T2), and 3 months postpartum (T3), in the intervention and the control group. The results indicate a prevalence of depressive symptoms (EPDS score ≥ 10) in Norwegian fathers of 3.1% at T1, 3.9% at T2, and 2.2% at T3 for the full sample. No significant EPDS score differences were found between the intervention and the control group at six weeks and three months postpartum. This suggests that the intervention had no clear impact on depressive symptoms during this time-period.

Study on the Cultivation of Labor Education among College Students

Labor is the basis of the survival and development of human society. Strengthening the labor education is of great significance in promoting the all-round development of the new generation, enhancing the core competitiveness of college students, and realizing the great rejuvenation of the Chinese nation. Based on the connotation of labor education, this paper puts forward the effective cultivation path of labor education from the perspectives of schools, society, family and individuals.

Perceptions of families and healthcare providers about feeding preterm infants in the neonatal intensive care unit: protocol for a qualitative systematic review

IntroductionThe underdevelopment of preterm infants can lead to delayed progression through key early milestones. Demonstration of safe oral feeding skills, constituting proper suck-swallow reflex are requirements for discharge from the...

Family Perspectives of the Roles of Parent Training and Information Centers and Service Coordinators in Early Intervention

Family Perspectives of the Roles of Parent Training and Information Centers and Service Coordinators in Early Intervention

Families’ importance in nursing care–families’ opinions: a cross-sectional survey study in the homecare setting

BackgroundInformal care is an essential part of support provided in the homecare setting. To ensure effective healthcare provision, good communication and collaboration between informal and formal care providers are crucial. To achieve this aim, it is necessary to have a clear understanding of the perspectives of all stakeholders. In the scientific literature, limited knowledge is available regarding family members’ opinions about their involvement in care. To date, no instruments have been developed that accurately measure these opinions. This study aims to elucidate the opinions of family members about their involvement in nursing care.MethodsA cross-sectional survey approach was employed. The methodological steps in this study were (1) convert the Families’ Importance in Nursing Care–Nurses’ Attitudes (FINC-NA) from a nurses’ perspective to a family perspective and thus develop the Families’ Importance in Nursing Care–Families’ Opinions (FINC-FO) and (2) measure families’ opinions regarding their involvement in home nursing care. The questionnaire was sent to 3,800 patients with activated patient portals, which accounts for about 17% of the total patient base. Responses were received from 1,339 family members, a response rate of 35%.ResultsThe developed FINC-FO questionnaire showed homogeneity and internal consistency. The results of the questionnaire indicate that family members consider it important to be involved in care and that they wish to be acknowledged as participants in discussions about care (planning) but are less inclined to actively participate in the provision of care by nurses. Family members expressed less explicit opinions about their own support needs. Factors such as level of education, type of partnership, and amount of care provided are seemingly associated with these opinions.ConclusionsFamily members in the homecare setting wish to be involved in discussions about care (planning). The transition in care from primarily formal to more informal care necessitates an awareness and clear definition—on part of both healthcare professionals and families—of their respective roles in the provision of care. Communication about wishes, expectations, and the need for support in care is essential to ensure quality of care and that the family can sustain caregiving.

Vagal Nerve Stimulation in the Pediatric Population and Correlation Between Family and Treatment Team Perspectives: Single-center Experience.

Vagal nerve stimulation (VNS) is an adjunctive therapy to pharmacological treatment in patients with drug-resistant epilepsy. This study aimed to assess the efficacy of VNS therapy for seizure frequency reduction and improving quality of life (QOL) measures in children with refractory epilepsy and to evaluate the correlation between the perspectives of families and those of the treating team. This was a prospective cohort study conducted at Abha Maternity and Children's Hospital, Saudi Arabia, from 2018 to 2022. A total of 21 pediatric patients who completed one year of follow-up after VNS implantation were included. Patients were aged between 2 and 14 years, with a mean age of 8.14 ± 3.92; 11 (52.4%) patients were female. Family and physician assessments were collected blinded to each other using Clinical Global Impression of Improvement (CGI-I) scores and QOL assessments to evaluate the correlation between the families' and treating team's perspectives on VNS outcomes. In this study involving 21 patients with intractable epilepsy, VNS showed significant efficacy in reducing the frequency of seizures. VNS significantly reduced the number of seizures per week from a baseline median of 35 to a median of 0.25 at the end of the follow-up period, representing a dramatic reduction of 99.3% (p < 0.001). The number of emergency department visits per year decreased from a baseline median of 12 to a median of 2, a reduction of 83.3% (p < 0.001), whereas the number of hospital admissions per year decreased from a baseline median of 3 to a median of 1, a 66.7% decrease (p < 0.001). The number of antiepileptic medications taken decreased from a median of 4 to 3 (p < 0.001). Notably, 28.57% of the patients achieved complete seizure freedom, and 38% exhibited significant improvement, with at least 50% reduction in seizure frequency. Importantly, none of the patients experienced an escalation in seizure frequency following VNS treatment. The family and physician assessments showed varying degrees of alignment in perceptions, with "concentration" exhibiting a significant positive correlation (r = 0.498, p = 0.022), indicating noteworthy agreement, whereas verbal communication did not show a substantial correlation (r = -0.062, p = 0.791), indicating a divergence of views. VNS is a promising and well-tolerated therapy for individuals with intractable seizures, offering clinical benefits and potential enhancements in various aspects of QOL. The varying perceptions between family and physician assessments highlight the importance of considering multiple perspectives when evaluating treatment outcomes.

Asthma Care from Home: Study protocol for an effectiveness-implementation evaluation of a virtually enabled asthma care initiative in children in rural NSW.

Asthma is the leading source of unscheduled hospitalisation in Australian children, with a high burden placed upon children, their parents/families, and the healthcare system. In Australia, there are widening disparities in paediatric asthma care including inequitable access to comprehensive ongoing and planned asthma care for children. The Asthma Care from Home Project is a comprehensive virtually enabled asthma model of care that aims to a. supports families, communities and healthcare providers, b. flexible and locally acceptable, and c. allow for adoption of innovations such as digital technologies so that asthma care can be provided "from home", reduce potentially preventable asthma hospitalisation, and ensure satisfaction at a patient, family, and healthcare provider level. The model of care includes standardisation of discharge care through provision of an asthma discharge resource pack containing individual asthma action plan, follow-up letters for the child's general practitioner (GP) and school/child care, and access to online asthma educational sessions and resource; post-discharge care coordination through text message reminders for families for regular GP review, email correspondence with their child's GP and school/childcare; and virtual home visits to discuss home environmental triggers, provide personalised asthma education and respond to parental concerns relating to their child's asthma. This study is comprised of three components: 1) a quasi-experimental pre/post impact evaluation assessing the impact of the model on healthcare utilisation and asthma control measures; 2) a mixed-methods implementation evaluation to understand how and why our intervention was effective or ineffective in producing systems change; 3) an economic evaluation to assess the cost-effectiveness of the proposed model of care from a family and health services perspective. This study aims to improve access to asthma care for children in rural and remote areas. Implementation evaluation and economic evaluation will provide insights into the sustainability and scalability of the asthma model of care.

The effect of an improved ICU physical environment on outcomes and post-ICU recovery—a protocol

BackgroundIntensive care medicine continues to improve, with advances in technology and care provision leading to improved patient survival. However, this has not been matched by similar advances in ICU bedspace design. Environmental factors including excessive noise, suboptimal lighting, and lack of natural lights and views can adversely impact staff wellbeing and short- and long-term patient outcomes. The personal, social, and economic costs associated with this are potentially large. The ICU of the Future project was conceived to address these issues. This is a mixed-method project, aiming to improve the ICU bedspace environment and assess impact on patient outcomes. Two innovative and adaptive ICU bedspaces capable of being individualised to patients’ personal and changing needs were co-designed and implemented. The aim of this study is to evaluate the effect of an improved ICU bedspace environment on patient outcomes and operational impact.MethodsThis is a prospective multi-component, mixed methods study including a randomised controlled trial. Over a 2-year study period, the two upgraded bedspaces will serve as intervention beds, while the remaining 25 bedspaces in the study ICU function as control beds. Study components encompass (1) an objective environmental assessment; (2) a qualitative investigation of the ICU environment and its impact from the perspective of patients, families, and staff; (3) sleep investigations; (4) circadian rhythm investigations; (5) delirium measurements; (6) assessment of medium-term patient outcomes; and (7) a health economic evaluation.DiscussionDespite growing evidence of the negative impact the ICU environment can have on patient recovery, this is an area of critical care medicine that is understudied and commonly not considered when ICUs are being designed. This study will provide new information on how an improved ICU environment impact holistic patient recovery and outcomes, potentially influencing ICU design worldwide.Trial registrationACTRN12623000541606. Registered on May 22, 2023. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=385845&isReview=true.

Perspectives on dementia care self-learning platform: A focus group study of family and professional caregivers

ObjectiveTo compare perspectives of family and professional caregivers regarding an online self-learning platform. MethodsFamily and professional caregivers were interviewed separately. A thematic analysis was conducted with 12 family caregivers and 13 professional caregivers of people living with dementia in Macao using six semi-structured focus group interviews. ResultsFamily and professional caregivers had different perspectives regarding the application of online learning program Four main themes emerged from the focus groups, including similarities and differences, namely 1) Need for services; 2) Accessibility to services; 3) Barriers to online learning; 4) Adjustments to the platform. ConclusionsThe psychological assurance offered by an online learning program is imperative to the well-being of family caregivers. By identifying the gap between the needs and abilities of family caregivers and those imagined by professional caregivers, it allows for the development of support programs and interventions tailored to meet the specific needs of family caregivers.

Analysis and Optimization of Residential Elements from the Perspective of Multi-Child Families in the Yangtze River Delta Region

Over the last few decades, policy changes have resulted in changes in family structure and cyclical changes within families. The structure of multi-child families will have a significant influence on housing demand and supply, necessitating a thorough demand study. This study examines the requirements of 739 multi-child families in the Yangtze River Delta (YRD) region at different stages and graphically displays the variables influencing their level of housing satisfaction, offering a scientific reference for the design and optimization of housing. Firstly, the residential elements that impact families with multiple children were categorized into 3 categories, 14 subcategories, and 65 influencing elements based on expert consultation and word frequency data. Secondly, 739 families in the YRD region were chosen for investigation, and importance–performance analysis (IPA) was employed to study and assess the residential elements of multi-child families. The IPA study findings were compared to those obtained from on-site surveys and network data crawling. Finally, the residential elements to be optimized were quantitatively determined, and the relevant optimization techniques were provided in conjunction with door-to-door interviewing. This study examines the needs of multi-child families at various phases, as well as the factors that impact their residential satisfaction, and provides optimization solutions for the long-term use and renewal of residential structures.

Beyond the Tailbone: A Family's Journey Through Caudal Regression Syndrome—A Triple Sibship

BackgroundCaudal regression syndrome (CRS), also known as caudal agenesis, results from abnormal development of the caudal aspect of the spinal cord and vertebral column due to an earlier abnormality of gastrulation. ResultsThis report showcases a unique scenario where three siblings, devoid of any prior family history or identifiable risk factors, exhibit symptoms of CRS and receive care at a government-run tertiary facility dedicated to children's health. In establishing a concrete diagnosis, we relied on skeletal surveys, comprehensive symptom evaluation, and medical history assessment. Additionally, we recommended further investigation through magnetic resonance imaging and genetic testing to attain a more in-depth understanding and confirmation of the condition. Unfortunately, the financial constraints faced by the parents led to the unfeasibility of pursuing these advanced diagnostic options. Given the rarity of this syndrome and the limited existing literature, our report is a significant contribution. It marks the first comprehensive exploration of CRS from the genetic and familial predisposition perspective, shedding new light on this rare condition. ConclusionThis case series pioneers our understanding of the familial and genetic connections between CRS and sacral agenesis. Strikingly, each subsequent generation has experienced more severe manifestations earlier, furnishing compelling evidence that underpins the genetic predisposition to CRS.

A Research Agenda to Support Families of People With Intellectual and Developmental Disabilities With Intersectional Identities.

Family members provide significant practical and emotional support to people with intellectual and developmental disabilities (IDD) across the lifespan. In September 2022, the State of the Science Conference on Community Living: Engaging Persons With Intellectual and Developmental Disabilities From Underserved Racial, Ethnic, Linguistic, and Cultural Groups in Research was held. This article summarizes the efforts of the workgroup that developed research goals related to supporting families of people with IDD. The focus was on families with intersectional identities and minoritized communities. Recommended areas of future research include exploratory research to better understand the experiences of these families, perspectives of families with intersectional identities about the formal support system, funding for family support and services, and inclusive research strategies.

Growing Up Together in Society (GUTS): A team science effort to predict societal trajectories in adolescence and young adulthood

Our society faces a great diversity of opportunities for youth. The 10-year Growing Up Together in Society (GUTS) program has the long-term goal to understand which combination of measures best predict societal trajectories, such as school success, mental health, well-being, and developing a sense of belonging in society. Our leading hypothesis is that self-regulation is key to how adolescents successfully navigate the demands of contemporary society. We aim to test these questions using socio-economic, questionnaire (including experience sampling methods), behavioral, brain (fMRI, sMRI, EEG), hormonal, and genetic measures in four large cohorts including adolescents and young adults. Two cohorts are designed as test and replication cohorts to test the developmental trajectory of self-regulation, including adolescents of different socioeconomic status thereby bridging individual, family, and societal perspectives. The third cohort consists of an entire social network to examine how neural and self-regulatory development influences and is influenced by whom adolescents and young adults choose to interact with. The fourth cohort includes youth with early signs of antisocial and delinquent behavior to understand patterns of societal development in individuals at the extreme ends of self-regulation and societal participation, and examines pathways into and out of delinquency. We will complement the newly collected cohorts with data from existing large-scale population-based and case-control cohorts. The study is embedded in a transdisciplinary approach that engages stakeholders throughout the design stage, with a strong focus on citizen science and youth participation in study design, data collection, and interpretation of results, to ensure optimal translation to youth in society.

The role of critical care nurses in organ and tissue donation: A position statement of the Australian College of Critical Care Nurses

IntroductionAustralian organ and tissue donation rates are low compared to other countries. Acknowledging that donation practices vary across Australia, the Australian College of Critical Care Nurses supported the development of a position statement to explicate critical care nurses’ role in supporting organ and tissue donation. Several Australian peak professional organisations provide guidance to inform and support organ and tissue donation. AimThe aim of this study was to develop a position statement using contemporary Australian research evidence to build upon and complement existing guidance, focussing on the role of critical care nurses in organ and tissue donation in Australian critical care. MethodAn approach similar to a rapid review was used, providing a streamlined approach to synthesising evidence. A comprehensive search using Medical Subject Headings, keywords, and synonyms was undertaken using Medline and CINAHL Complete via EBSCOhost to identify peer-reviewed Australian research evidence about critical care nurses’ role, obligations, expectations, and scope of practice during organ and tissue donation. Narrative synthesis was used to synthesise the research evidence. FindingsThe importance of separating death from organ donation in discussions with family, the timing and the approach to organ donation conversations, and working in collaboration with the DonateLife Donation Specialist Nurses were identified. The importance of understanding family perspectives, caring for families, and collegial support for critical care clinicians were also identified. With the guidance of peak professional organisations, the research evidence was then used to develop practice recommendations for critical care units, leaders, and critical care nurses. Discussion and conclusionThe recommendations explicate the important contribution critical care nurses can make to ensuring timely, sensitive communication, providing high-quality end-of-life care, supporting families irrespective of the donation decision and supporting colleagues from the wider critical care team, thereby optimising the processes related to organ and tissue donation in Australian critical care settings.

Caesarean Section in the Perspective of Family, Health, and Islamic Law

Caesarean Section in the Perspective of Family, Health, and Islamic Law

Exploring Family Perspectives on a Group-Based Hands-on Advanced Carbohydrate Counting Education Program for Children and Adolescents with Type 1 Diabetes: A Qualitative Study.

The care needs of children and adolescents with type 1 diabetes and their families are frequently approached as if they were identical to those of adults, overlooking the distinct challenges young people may face. It has been stated that children and adolescents often find conventional conversations with diabetes specialists tiresome and unpleasant. The present study focuses on familial experiences of an advanced carbohydrate counting program tailored to children and adolescents. The data encompass semi-structured interviews with families who participated in a group-based child-centered advanced carbohydrate counting program. The analysis revealed five themes: (1) peer-to-peer interaction is an essential determinant of sharing and learning; (2) illness perception significantly influences dietary intake; (3) normalization of diabetes in everyday life eases the disease burden; (4) repetition of dietary knowledge is important for retention; and (5) creating a safe and playful learning environment is crucial to engaging children and adolescents in their own treatment. The present findings suggest that it would be beneficial to explore and consider alternative teaching approaches that are adapted to a more interactive and engaging learning environment that is specifically tailored to children and adolescents. This entails moving away from traditional individual approaches.