Family-centered Care For Children Research Articles

Research Trends in Family-Centered Care for Children With Chronic Disease: Keyword Network Analysis.

Family-centered care is an approach to promote the health and well-being of children with chronic diseases and their families. This study aims to explore the knowledge components, structures, and research trends related to family-centered care for children with chronic conditions. We conducted the keyword network analysis in three stages using the keywords provided by the authors of each study: (1) search and screening of relevant studies, (2) keyword extraction and refinement, and (3) data analysis and visualization. The core keywords were child, adolescence, parent, and disabled. Four cohesive subgroups were identified through degree centrality. Research trends in the three phases of a recent decade have been changed. With the systematic understanding of the context of the knowledge structure, the future research and effective strategy establishment are suggested based on family-centered care for children with chronic disease.

Family-centered Care for Children with Disabilities in Japan-the Origin and Future of the "Ryouiku".

Family-centered care is recommended as the best practice in pediatric physiotherapy. It is a philosophy that pediatric physiotherapists should be familiar with, as it relates to the health of the child as well as the family. However, family-centered care has not been adequately taught in physiotherapy education in Japan. The term "Ryouiku" was coined in 1940 in Japan. The concept of the Ryouiku is essentially Evidence-Based Medicine and is the very essence of family-centered care with a focus on function. By re-thinking the Ryouiku and applying it to pediatric physiotherapy education in Japan, "glocal" family-centered care can be practiced in a Japanese setting.

Patient and family-centered care for children: A concept analysis.

Family-centered care has evolved into patient and family-centered care. Although this is not a new concept; however, its application to nursing practice is very challenging among nurses due to its ambiguity. This study aimed to clarify the concept of patient and family-centered care for children. Walker and Avant's concept analysis method was used. A literature search was also done using the following databases: Google Scholar, ProQuest, ScienceDirect, and Scopus, for articles published from 2011 to 2021. The defining attributes of patient and family-centered care are partnership, communication, respect, and compassion. Antecedents include patient and family involvement, readiness to collaborate and participate, competency and desire of the care professional team, supportive environment, and policies. Consequences of the patient and family-centered care include improved child outcomes and quality of life, promotion of patient safety, increased patient and family satisfaction, enhancement of humanistic values, reduction of hospitalization cost and length of stay, and decreased stress, anxiety, and depression in family members. Four attributes of patient and family-centered care, its antecedents, and consequences may aid researchers in better understanding the concept and its application in nursing practice. This concept can also be used to establish quality care delivery strategies and promote professional relationships between nurses, patients, and families in clinical settings.

Family-centred care for children with traumatic brain injury and/or spinal cord injury: a qualitative study of service provider perspectives during the COVID-19 pandemic

ObjectivesCOVID-19 has led to rapid changes in rehabilitation service provision for young people living with traumatic brain and/or spinal cord injury. The aim of this project was to understand the...

Finishing Well: Compassionate Extracorporeal Membrane Oxygenation Discontinuation

Extracorporeal Membrane Oxygenation (ECMO) is associated with significant mortality. Provision of high-quality end-of-life (EOL) care for patients supported on ECMO entails specific physiological, pharmacological, and technical considerations. Limited guidance exists for clinicians on delivery of optimal EOL care on ECMO. In this article, we review the unique aspects of EOL care as they apply to ECMO support and propose a pragmatic, interdisciplinary framework for compassionate ECMO discontinuation in children and adults.The goal of compassionate ECMO discontinuation (CED) is to allow natural death from the underlying disease process while delivering high-quality EOL care to ensure a good death experience for patients and their families. The CED approach includes: 1) a family meeting to define goal-concordant EOL care and prepare families and patients for the dying process; 2) clinical preparation, including symptom management and discontinuation of other life-sustaining therapies; 3) technical aspects which necessarily vary according to patient factors and the circuit and cannulation strategy; and 4) bereavement support. The proposed CED considerations and checklist may serve as tools aiding provision of comprehensive, quality, individualized patient- and family-centered care for children and adults dying despite ECMO support. A structured CED may enhance EOL experiences for patients, family, and staff by providing a respectful and dignified death experience. Future research is required to determine feasibility and effectiveness of the framework, which must be adapted to the patient and institutional setting.

Family-Centred Care for Children with Biopsychosocial Support Needs: A Scoping Review

Children’s health and wellness are influenced by a wide range of biological, psychological or social factors with a rising number of children requiring supportive healthcare. Family-centred care is considered best practice paediatric healthcare; however, processes and actions are not well explored in the literature. This research aimed to synthesise the evidence on the processes of implementation of family-centred care for children with biopsychosocial support needs and identify outcome measures used in the studies. A scoping search across Cinahl, Medline, Web of Science, Scopus, Psyc INFO, Embase and Education Research Complete for English language publications published between 2005 and 14 October 2020 was conducted. A total of 42 studies met the inclusion criteria: a focus on the processes of implementation of family-centred care for children aged 0–21 years with biopsychosocial needs. Diversity in the implementation of interventions of family-centred care was evident due to heterogeneity in study populations, methodology and reporting. Health condition or impairment focused outcome measures were found to be standard with a paucity of outcomes measuring participation or activity. Theoretical and practical elements of implementing interventions were identified as novel and key attributes of family-centred care and contributed to a new standardised framework for the processes of implementation of family-centred care. Future research should address whether mapping family-centred care to the International Classification of Function model helps families and health professionals identify meaningful participation and activity outcomes, which in turn may guide the processes of implementation of family-centred care interventions.

Family-Centered Care for Children and Families Impacted by Neonatal Seizures: Advice From Parents

BackgroundParents of neonates with seizures are at risk of mental health symptoms due to the impact of illness on family life, prognostic uncertainty, and the emotional toll of hospitalization. A family-centered approach is the preferred model to mitigate these challenges. We aimed to identify strategies to promote family-centered care through an analysis of parent-offered advice to clinicians caring for neonates with seizures. MethodsThis prospective, observational, and multicenter (Neonatal Seizure Registry) study enrolled parents of neonates with acute symptomatic seizures. Parents completed surveys about family well-being at 12, 18, and 24 months corrected gestational age. Parents were asked open-ended questions eliciting their advice to clinicians caring for neonates with seizures. Responses were analyzed using a conventional content analysis approach. ResultsAmong the 310 parents who completed surveys, 118 (38%) shared advice for clinicians. These parents were predominantly mothers (n = 103, 87%). Three overarching themes were identified. (1) Communicate information effectively: parents appreciate when clinicians offer transparent and balanced information in an accessible way. (2) Understand and validate parent experience: parents value clinicians who display empathy, compassion, and a commitment to parent-partnered clinical care. (3) Providesupportand resources: parents benefit from emotional support, education, connection with peers, and help navigating the health care system. ConclusionsParents caring for neonates with seizures appreciate a family-centered approach in health care encounters, including skilled communication, understanding and validation of the parent experience, and provision of support and resources. Future interventions should focus on building structures to reinforce these priorities.

How Storylistening Promotes Family-centered Care for Children with Cochlear Implants

How Storylistening Promotes Family-centered Care for Children with Cochlear Implants

Service Providers’ Perception of Providing Family-Centered Care for Children with Developmental Disabilities: A Meta-Analysis

ABSTRACT Understanding service providers ‘ perceptions of family-centred care (FCC) is essential to improve the processes and outcomes of children’s services in early intervention. A systematic review and meta-analysis of the research on the Measure of Processes of Care-Service Provider (MPOC-SP) were performed to determine the extent service-providers of children with developmental disabilities perceive while they provided FCC. A comprehensive literature search was conducted on three databases. A total of 446 studies were retrieved, and 14 met the criteria of the current research. Meta-analysis for 2,094 service-providers of children with developmental disabilities that were included in 14 studies was conducted based on the four scales of the MPOC-SP. The aggregated means of the four factors of the MPOC-SP, showing interpersonal sensitivity, providing general information, communicating specific information, and treating people respectfully, is from 4.26 to 5.77. The result shows that treating people respectfully has the highest score while providing general information has the lowest one. Service providers are encouraged to focus on children’s and their families’ needs for general information. Further research on better understanding inter-professional service providers’ perspectives of providing family-centred care and engaging professionals in intervention processes are recommended.

Family-centered care for children with medical complexity: A goal-planning initiative.

NPs piloted a family-centered goal-planning tool with a medically complex pediatric population during outpatient clinic visits. The tool was an effective reminder to discuss goals after trust and rapport are established between provider and family.

Effectiveness of parent training in improving stress-coping capability, anxiety, and depression in mothers raising children with autism spectrum disorder.

PurposeRaising a child with autism spectrum disorder (ASD) can be a stressor, and mothers of ASD children often present with high levels of stress and depression. Interventional steps to enhance parental coping skills and resiliency are more important for parental mental health and the family-centered care of children with ASD than merely reducing parental stress. Although the importance of stress-coping skills is well established, only a few studies have investigated interventional steps to improve parental coping or resiliency. Parent training (PT) is known to improve a mother’s mental health. Here, we aimed to assess the effectiveness of PT in improving the stress-coping style of mothers raising children with ASD.Patients and methodsThirty mothers of children with ASD aged 4–11 years participated in this study. The mothers underwent PT based on the Hizen Parenting Skills Training in Japan, which comprised seven sessions. Each session included education on behavior therapy, individual consultation, and workshops in small groups. Sixteen mothers completed psychological assessment, including the Stress Coping Inventory, the Beck Depression Inventory Second Edition, the State–Trait Anxiety Inventory, and the Child Behavior Checklist conducted before and after 2 months of PT.ResultsThe outcomes before and after the PT program were compared using the paired t-test and Pearson’s correlation. After the PT program, the mothers’ stress-coping strategy “positive appraisal” significantly increased (P<0.01) and “escape/avoidance” significantly decreased (P<0.01). The Beck Depression Inventory Second Edition (P<0.05) and the trait anxiety scores (P<0.01) also significantly decreased. The change in the stress-coping strategy “distancing” had a significantly negative correlation with the change in the externalizing Child Behavior Checklist T-scores of children with ASD (Pearson r=−0.518, P<0.05).ConclusionPT may be effective for mothers of children with ASD to improve their stress-coping style and to decrease their depression and trait anxiety.

It Takes A Village: Harnessing the power of strategic partnerships to improve health outcomes for children and young people in Queensland

Introduction: It is well recognised in business that strategic partnerships can facilitate the realisation of important objectives and build profitability. Key partnerships can bring significant opportunities and speed the progress of new initiatives. This is true also of public healthcare where the development of cooperative relationships is critical to staying on the leading edge of new technology and developing long-term sustainable capabilities. By bringing together partners with different skillsets and a shared vision, we can leverage scarce resources and specialist skills to reach our integrated care objectives. Children’s Health Queensland (CHQ) is a specialist state wide hospital and health service providing high-quality, family-centred care for children and young people from across Queensland and northern New South Wales, Australia. We partner with hospitals, health services and non-government organisations to ensure every child and young person has access to the best possible care. Families are a vital part of our team and we place the child and family at the heart of all we do. Children’s Health Queensland’s Strategic Plan 2016-2020 identifies partnerships as one of the key strategies in improving service coordination and integration, and optimising health outcomes for children and young people. This includes partnering with adult services to ensure continuity of care into adulthood; partnering with health sector providers locally and state wide to inform state and national policy; strengthening emphasis on Aboriginal and Torres Strait Islander child and family access to eliminate barriers to services, promote shared leadership, grow the Indigenous workforce and build cultural competency; partnering with public, primary health organisations and agencies to encourage further development of protection, promotion, prevention and early intervention services; and working with non-government organisations and charities to provide targeted support services to children, young people and their families. CHQ has developed a unique suite of partnerships, which are all directed at providing enhanced family-centred care. This suite includes clinical, nonclinical, research, educational and arts-in-health partnerships which all combine to create innovation in integrated care delivery. Being open to partnerships and networking underpins the foundations of integrated care, and aligns with the CHQ values of Imagination and Care. Aim: This presentation showcases CHQ’s portfolio of partnerships and our approach to integrating care. We present the key ingredients required to realise the benefits of successful strategic partnerships. The presentation will also explore some of the drawbacks of strategic partnerships and lessons learned along our journey. Targeted Population: Children and young people across Queensland moving across primary and tertiary levels of care. Key Stakeholders: Key Stakeholders include patients, families, clinicians and partner organisations across Australia. Timeline: CHQ’s partnerships work will be sustainable across the long-term with medium to long-term impacts realised over the next 5-10 years. Transferability: Information from this presentation will be transferable to other hospitals and health services. Conclusions: Take home messages include identifying partnership opportunities; defining the partnership value; giving relationships time to develop to fruition; respecting differences and diversity; recognising the importance of creating clear expectations and boundaries; and aligning organisational vision and values.

Paediatric Optometry Alignment Project: towards interprofessionalilty between paediatric eye care providers

The Paediatric Optometry Alignment Project (POAP) was established in response to unsustainable demand for paediatric ophthalmology services in Queensland. In June 2015, 1700 children waited for an ophthalmology appointment at the Lady Cilento Children’s Hospital (LCCH), many longer than clinically recommended. Multiple factors contributed to this, including large numbers of children with stable, treated conditions returning for monitoring. It was apparent that collaboration with community optometrists reviewing these patients would improve access. However, a long history of mistrust exists between ophthalmology and optometry, creating a barrier to implementation. Change implemented : LCCH held a workshop on evidence-based paediatric eye care for community optometrists. Optometrists paid to attend the course, consisting of lectures and case discussions. They received referral guidelines, templates and access to online education. Following the workshop, optometrists could become ‘aligned’ with LCCH. Alignment was conditional upon having current registration/insurance, agreeing to follow clinical pathways, and having no affiliation with the Australasian College of Behavioural Optometry (ACBO). Communication channels were established to facilitate discussion and re-referral if necessary. The department began discharging to these optometrists in May 2016. Aim : To develop a shared model of outpatient care for children with specific chronic eye conditions; to manage tertiary hospital demand, improve access to specialist care and improve interprofessionality between ophthalmologists and optometrists. Targeted population/stakeholders : Children over 8yrs with stable, treated strabismus and amblyopia. Stakeholders include: patients/ families, community optometrists, Optometry Australia, Optometry Queensland Northern Territory, Royal Australian and New Zealand College of Ophthalmologists, Children’s Health Queensland and Queensland Department of Health. Timeline : • September 2015 – funding received • October 2015 - project officer recruited • March 2016 – workshop held • May 2016 – 42 optometrists aligned • May 2016 - discharge commenced • June 2016 - interim evaluation Highlights : First Australian project demonstrating collaboration between paediatric ophthalmologists and community optometrists. First international project demonstrating shared management of children with strabismus and amblyopia. Sustainability : Low ongoing costs: • optometrists pay to attend course; bill under Medicare • project officer cost offset by fewer travel subsidies for patients attending LCCH • future workshops planned in regional centres Transferability : The range of conditions discharged should expand over time as ophthalmologists’ trust in the model grows. Training of community providers to align with specialist management has been based on the success of antenatal shared-care programs. The model can be replicated in other specialties. Conclusions : POAP addressed a gap in optometry education, improved family-centredness of care, enhanced access to services and improved collaborative working arrangements between ophthalmologists and optometrists. Lessons learned : We failed to address the potential reputational and clinical risks involved in aligning with behavioural optometrists – a subset of ‘conventional optometrists’ before commencement of the project. Following legal advice, stricter inclusion and exclusion criteria were developed. Discussions : Formal evaluation will occur 12 months post-implementation, including clinical outcomes, wait list analysis and family and clinician satisfaction surveys. Final evaluation should demonstrate cost-effective, family-centred care for children with stable eye disease has been delivered, with excellent clinical outcomes and high family and clinician satisfaction.

FAMIlY-CENTRED HEAlTH CARE IN A PSYCHIATRIC HOSPITAl FOR CHIlDREN WITH SUICIDAl BEHAVIOR PHENOMENON

The study aims at identifying the organizational and methodological aspects of family-centered care in a psychiatric hospital for children with suicidal behavior. The objectives of the study were to assess the readiness of the parents/legal representatives to participate in correctional and rehabilitation activities in the period of hospitalization of the child, identify the key needs of the family, to formulate practical recommendations on organizational and methodological issues of family-centered care for children with suicidal behavior. The study involved all the girls (57), hospitalized in January-October 2014 about suicidal symptoms in the only psychiatric children hospital in Moscow, and 98 of their parents/legal representatives. There were used anamnestic (including the study of family history a suicide), analysis if diseases histories, clinical and psychopathological methods, system analysis of the level of family functioning and parental questionnaire during the child's hospitalization. 98 % of the parents are willing to be involved in medical activities in a varying degree. Main needs of majority of families are as follows: "Information about the state of the child, especially the development, diagnosis and prospects" (98 %) and "Training in new forms of behavior and education, which can be used at home after discharge" (92 %). Methodological basis and recommendations on the formation of organizational conditions of family-centered medical care for children with suicidal behavior were obtained and stages of family therapy were described. Readiness and needs of the family to participate in correctional and rehabilitation activities in children suggests the need to include families into prevention and treatment of suicidal behavior in children. Implementation of the concept of family-centered health care for a child with suicidal behavior suggests revising the rules adopted in the practice of child psychiatrists, psychotherapists and medical aid organization as a whole. Using not only the rehabilitation potential of the child but also his micro-social environment (the family) creates conditions for qualitative changes in the prevention, treatment and social adaptation of children with suicidal symptoms.

Health-Related Quality of Life in Children with HIV Infection—A Cross-Sectional Study from South India

Assessment of health-related quality of life (HRQoL) in children with HIV is crucial to improve the psychosocial well-being of this vulnerable population. The objective of this study was to assess the HRQoL of children with HIV infection aged between 5 and 18 years. The study was conducted in 144 children with HIV attending an antiretroviral therapy (ART) center in Karnataka to assess the HRQoL, using the PedsQL questionnaire. Total 144 children were included in the study, who had HRQoL with good physical (75.99 ± 13.46), psychosocial (71.01 ± 12.83), and total (72.43 ± 12.73) scores according to the child's perspective. Number of boys and children raised in foster homes were 51.3% (74) and 56% (81), respectively. Even though all children had complete adherence and had a good immunologic and clinical profile, we found that their HRQoL did not vary with stage of infection, duration of treatment, or immunologic status. Our findings underscore the importance of family-centered care for children living with HIV and advocate enhancing psychosocial and mental development to improve the HRQoL of children.

Family-centred care for children with long-term conditions

Family-centred care for children with long-term conditions

One Size Care Does Not Fit All Patients Undergoing a Spinal Fusion.

Spinal fusion (SF) surgery is a complex procedure that affects children with and without underlying disabilities. The purpose of this article was to describe the necessary steps when preparing a child, specifically with cerebral palsy (CP), and family for an SF, while also emphasizing the postoperative care during discharge planning. Literature review on pediatric patients undergoing SF and those who have CP. Literature was searched using the CINAHL database, from 2009 to 2016. Key terms included spinal fusion, cerebral palsy, pediatrics, orthopedic surgery, team approach, management and developmental disability, or disability. Literature was reviewed to provide recommendations on caring for children undergoing an SF who also have CP as little literature supports exact care measures on this cohort of patients. Variations exist in the surgery type, specification, and approach, as well as history, growth, and developmental capabilities of the child and caregiver's expectations. Nurses must be aware of all of these factors to promote safe, effective, timely, and patient-centered care. In particular, patients with an underlying condition of CP may be more likely to experience complications that make understanding these processes essential to the surgery itself. Although an SF may be a necessary surgery to correct a curve or spine deformity, there are many complications that a child with CP might encounter. The health care team must work closely with the child and the family to ensure that all treatment recommendations are met to minimize any unnecessary complications. Each surgery must focus specifically on meeting the child's and family's needs to ensure success while incorporating the health care team's approach. Providing patient and family-centered care for children having an SF is essential to optimize outcomes and improve quality of life for patients and caregivers.

Patient- and Family-Centered Care of Children in the Emergency Department

Patient- and family-centered care is an approach to the planning, delivery, and evaluation of health care that is grounded in a mutually beneficial partnership among patients, families, and health care professionals. Providing patient- and family-centered care to children in the emergency department setting presents many opportunities and challenges. This revised technical report draws on previously published policy statements and reports, reviews the current literature, and describes the present state of practice and research regarding patient- and family-centered care for children in the emergency department setting as well as some of the complexities of providing such care.

Family-centered care for children with cerebral palsy: conceptual and practical considerations to advance care and practice.

This article focuses on conceptual and practical considerations in family-centered care for children with cerebral palsy and their families. In the last 5 years, there have been important advances in our understanding of the components of family-centered care, and initial attempts to understand the client change processes at play. Recent research elaborates on family-centered care by delving into aspects of family-provider partnership, and applying family-centered principles to organizational service delivery to bring about organizational cultures of family-centered care. Recent research has also begun to consider mediators of client change, and new practice models have been proposed that embrace family-centered principles and illustrate the "art" of practice. Future research directions are discussed, including explorations of causal relationships between family-centered care principles, elements of caregiving practice, client change processes, and child and family outcomes. The meaning of the recent literature for pediatric neurology practice is considered.

Overheard: Getting Parents on Your Side

Overheard: Getting Parents on Your Side