Psychosocial Care For Children Research Articles

Recruitment and retention challenges and strategies in randomized controlled trials of psychosocial interventions for children with cancer and their parents: a collective case study.

In pediatric oncology there are few examples of successful recruitment and retention strategies in psychosocial care research. This study aims to summarize experiences, challenges, and strategies for conducting randomized controlled trials (RCTs) of psychosocial intervention studies among children with cancer and their parent(s). We conducted a collective case study. To identify the cases, Pubmed and two trial registries were searched for ongoing and finished RCTs of psychosocial intervention studies for children with cancer and their parents. Online semi-structured expert interviews discussing recruitment and retention challenges and strategies were performed with principal investigators and research staff members of the identified cases. Nine studies were identified. Investigators and staff from seven studies participated, highlighting challenges and strategies within three major themes: eligibility, enrollment and retention. Regarding eligibility, collaborating constructively with healthcare professionals and involving them before the start of the study were essential. Being flexible, training the research staff, enabling alignment with the participants' situation, and providing consistency in contact between the research staff member and the families were important strategies for optimizing enrollment and retention. All studies followed a stepped process in recruitment. Conclusion: Although recruitment and retention in some selected studies were successful, there is a paucity of evidence on experienced recruitment and retention challenges in pediatric psychosocial research and best practices on optimizing them. The strategies outlined in this study can help researchers optimize their protocol and trial-implementation, and contribute to better psychosocial care for children with cancer and their parents. Trial Registration: This study is not a clinical trial. What is Known: • Performing RCTs is challenging, particularly in pediatric psychosocial research when both the child and parent are targeted. Recruitment and retention are common concerns. In pediatric oncology, there are few examples of successful recruitment and retention strategies in psychosocial care research. What is New: • Key strategies to collaborate constructively with healthcare professionals were outlined. Being flexible, training the research staff, alignment with the participant's situations and providing consistency in contact between the research staff member and the families were considered as essential strategies.

Quality of Life of Patients with Extra-Ocular Retinoblastoma in Abidjan

Extra-ocular retinoblastoma has a significant impact on children’ well being and their families. This condition poses a real public health problem like most neoplastic conditions, hence the importance of public awareness and psychosocial care for children and their respective families

From the psychiatric to the psychosocial crisis: the views present in the Child and Adolescent Psychosocial Care Centers

This article aims to identify the signs of crisis present in the discourses of Child and Adolescent Psychosocial Care Centers (CAPSij) workers and managers, in the light of the current paradigms in the field, indicating possible impasses and advances in psychosocial care for children and adolescents. We present the results of three exploratory and qualitative studies, which address the theme of the crisis in the CAPSij in the city of São Paulo, Brazil. We used as data collection instruments: a questionnaire, semi-structured interview scripts, and a focus group. We used the Thematic Content Analysis for data analysis, identifying two main categories: psychiatric crisis and psychosocial crisis. The notion of psychiatric crisis refers to the presence of acute symptoms and discusses how insufficient this conception is to respond to the complexity of crisis situations. The notion of a psychosocial crisis inscribes suffering as a singular and social experience revealing the importance of micro (family, school, other institutions, and community) and macro-social (social, historical, cultural, political, and economic) contexts in understanding the crisis. It is understood that the presence of both notions evidences the coexistence of psychiatric and psychosocial paradigms, revealing the process of paradigmatic transition in which these services are inserted. Finally, it is reiterated that the production of psychic suffering in children and adolescents is complex and that, to the same extent, their resources and responses should also be complex, thus protecting them from processes that produce more suffering such as institutionalization, pathologization, medicalization, and stigmatization.

The role of the teacher in identifying (non-Western) children in need for psychosocial care

Abstract Background The prevalence of mental health problems in Europe is higher among children with a non-Western than a Western background. Nevertheless, non-Western children use less psychosocial care. A possible explanation is the differences in parents' perceived need for care. Non-Western parents generally have a lower perceived need, which calls for other significant adults in the children's life to identify this need. This study investigates whether teachers could fulfil a role in identifying mental problems, especially in non-Western children, to improve the access to care. Methods The study sample of 9-year-old children was retrieved from the Generation R Study (N = 3,084), a population-based cohort of children born in Rotterdam, the Netherlands. Teacher- and mother-reported problems were measured at 6 years via questionnaires. Psychosocial care use was mother-reported at the research centre at 9 years (8.1% used care). Results Our findings showed that, among children who used care, elevated problem levels at 6 years were reported for 10% by mothers and teachers, for 16% by mothers only and for 22% by teachers only. Hierarchical logistic regressions showed that having teacher-reported problems was associated with psychosocial care use (OR:3.06, p<.05), also after adjusting for mother-reported problems (OR:2.83, p<.05). Ethnic background did not moderate this association. Nonetheless, non-Western children did use significantly less care than Western children (OR:.58, p<.05), irrespective of their problem level. Conclusions The association between teacher-reported problems and psychosocial care use suggests that teachers can play a role in identifying mental problems in children, in addition to parents. The role of the teacher might be particularly important for non-Western children in Western countries as their parents report on average a lower need for care, irrespective of the actual need. This calls for prevention strategies that focus on the teacher's unique position. Key messages Teachers have an important role in the identification of mental health problems and access to psychosocial care for children. The signalling function of teachers is extra important for children with a non-Western migrant background as this group uses less care, irrespective of their problem level.

Child Friendly Juvenile Police through Social Work Approach

The police are the first agency of contact for children in conflict with the law and children in need of care and protection. These children undergo varied problems that are bio-psychosocial, which is beyond their coping, which will lead to children resorting to unacceptable behaviors such as involving in unlawful activities. Department of Women and Child Development, Kerala, with support from NIMHANS, initiated a novel program to provide psychosocial care and support for children in conflict with the law. As part of the program, Special Juvenile Police Officials were trained in psychosocial care for children in need of care and protection and children in conflict with the law. Incorporating social work techniques in training police and skills in practice, especially among the special juvenile police units, will sensitize police on psychosocial problems and care for children that will support better execution of law in favor of children.

Advances in pediatric psychooncology.

This article reviews the current literature on psychosocial care of children with cancer with particular focus on evidence-based standards of care, including developments in systematic distress screening, utilization of patient-reported outcomes, evidence-based interventions, survivorship, palliative care and bereavement. Although attention to the psychosocial needs of the child and family is increasingly recognized as an essential element of care for children with cancer, implementing evidence-based care remains suboptimal. Recent efforts have focused on utilizing technology to improve the reach of these interventions and to enhance engagement with special populations, such as adolescents and young adults. Increasing data elucidate the long-term psychological and physical late effects of childhood cancer survivorship and the impact of cancer on siblings and the family. Gaps in clinical care and important directions for future research include the needs of infants and toddlers, overlooked minorities, and patients with hereditary tumor predisposition syndromes, and attention to the psychosocial impact of exciting new treatments, such as autologous chimeric antigen receptor (CAR) T-cell therapy. The evidence base for the psychosocial standards of care for children with cancer and their families continues to grow, but more work is needed to successfully implement these standards across pediatric cancer centers.

Prevalence of palliative care consultations in phase I pediatric oncology trials.

108 Background: In 2015 the Psychosocial Standards of Care Project for Childhood Cancer published 15 evidence-based standards for pediatric psychosocial care for children with cancer and their families. One standard endorses incorporation of palliative care to “reduce suffering throughout the disease process, regardless of disease status”. Patients enrolling on phase I studies represent a unique cohort within pediatric oncology, as they generally represent a patient population that has not responded to standard therapies and a chance of cure is limited. Phase I trials, primarily designed to test safety and feasibility, offer a low chance of therapeutic benefit and high risk of death. This study aims to define the prevalence of palliative medicine consultation for phase I patients. Methods: A retrospective chart review of pediatric patients enrolled in a National Cancer Institute (NCI) Pediatric Oncology Branch Phase I clinical trial between 2015-present, using the NIH Biomedical Translational Research Information System (BTRIS). Palliative Care Consult Notes, Advance Directive information, diagnoses and medications were captured. Results: We reviewed the records of 126 phase I patients; 66% were male, 47% were >18 years, 67% had relapsed/refractory leukemia, and 46% are now recorded as deceased. Palliative medicine was consulted in <20% of patients; all consultations were for symptom management, primarily pain control (91%). Only 9% of patients had an advance directive prior to enrollment at the NCI. During therapy at the NCI, an additional 20% of patients completed an advance directive, just over a third (35%) of which were patients who received palliative medicine consultation. Conclusions: Palliative care was infrequently consulted in a highly vulnerable patient population where survival outcomes are poor and disease or therapy side effects are substantial. Efforts to increase the use of palliative care services in this population may improve the quality of life for children and families. Future directions include working to standardize the involvement of palliative medicine for pediatric patients enrolling onto phase I clinical trials.

Disorders of Sex Development/Intersex: Gaps in Psychosocial Care for Children.

* Abbreviation: DSD — : disorder and/or difference of sex development Access to psychosocial care is currently inadequate for patients and families affected by a disorder of sex development (DSD; some individuals prefer the terms “intersex” or “differences of sex development,” and some do not identify with any of the labels). In 1 recent study of parents of infants with a DSD, only half of those parents who identified a need for emotional support received what they perceived to be adequate psychological care.1 This is troubling in that a case can be made that the primary challenges faced by parents of children newly diagnosed with a DSD are informational and psychosocial, not medical or surgical. Even in the case of life-threatening congenital adrenal hyperplasia, the most common cause of a 46,XX DSD, clinical management pathways are well established and driven by clinical practice guidelines not dissimilar from, for example, type 1 diabetes. In a DSD, however, families grapple with a variety of challenges beyond understanding complex medical and/or genetic information, including stigma-related concerns, coping with anatomical differences (whether or not surgery has occurred), surgical complications, lack of clarity regarding gonadal tumor risk, uncertainty about the stability of the child’s gender identity, fertility potential, and the disruptions and burdens associated with repeated medical visits. Detection of a DSD at birth is commonly a time of particularly acute distress; parents report high levels of emotional upheaval and cognitive confusion that often occurs concomitant with medical and surgical decision-making. There are close to 80 single-gene etiologies for isolated or syndromic DSDs.2 Major categories include genes affecting sex determination (eg, … Address correspondence to Michelle M. Ernst, PhD, Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave, Cincinnati, OH 45229. E-mail: michelle.ernst{at}cchmc.org

A Summary of Pediatric Palliative Care Team Structure and Services as Reported by Centers Caring for Children with Cancer.

Little is known about the composition, availability, integration, communication, perceived barriers, and work load of pediatric palliative care (PPC) providers serving children and adolescents with cancer. To summarize the structure and services of programs to better understand successes and gaps in implementing palliative care as a standard of care. Cross-sectional online survey about the palliative care domains determined by the Psychosocial Care of Children with Cancer and Their Families Workgroup. A total of 142 surveys were completed with representation from 18 countries and 39 states. Three-fourths of sites reported having a PPC program available for the pediatric cancer population at their center. Over one-fourth (28%) have been in existence less than five years. Fewer than half of sites (44%) offered 24/7 access to palliative care consultations. Neither hospital-based nor local community hospice services were available for pediatric patients at 24% of responding sites. A specific inpatient PPC unit was available at 8% of sites. Criteria for automatic palliative referrals ("trigger" diagnoses) were reported by 44% respondents. The presence of such "triggers" increased the likelihood of palliative principle introduction 3.41 times (p < 0.003). Six percent of respondents perceived pediatric oncology patients and their families "always" were introduced to palliative care concepts and 17% reported children and families "always" received communication about palliative principles. The most prevalent barriers to palliative care were at the provider level. Children and adolescents with cancer do not yet receive concurrent palliative care as a universal standard.

Psychosocial care for children with haemophilia and their parents in the Netherlands.

Children growing up with haemophilia are at greater risk for psychosocial problems than their healthy peers. Providing psychosocial care to children with haemophilia and their families is indispensable, since psychosocial factors can have a significant impact on health and health-related quality of life (HRQOL). Our aim was to give a description of psychosocial care provided by the multidisciplinary team of the Hemophilia Comprehensive Care Centre (HCCC) at the Emma Children's Hospital in Amsterdam, the Netherlands. With this overview, other caregivers and hospitals can benefit in organizing their psychosocial care for children with haemophilia. The focus of the psychosocial care provided by the multidisciplinary team is on preventing psychosocial problems and medical-related stress, and supporting and equipping the child with haemophilia and its parents with as many skills as possible to lead an independent life with a high HRQOL. Core elements of the psychosocial care are therefore monitoring and screening of HRQOL (e.g. in daily clinical practice via www.hetklikt.nu), psychoeducation (haemophilia camp, haemophilia school, disease-specific activities, meetings for girls, parent meetings), practical help (Emma at Work, an employment agency for adolescents and young adults; Educational Facility and school visits), psychosocial interventions (the On Track group intervention and the Haemophilia Coping and Perception Test) and individual care (psychological counselling and referrals). By providing this overview of psychosocial support offered and by sharing this knowledge, psychosocial care can become more structured and consistent between HCCCs around the world. Potentially, processes and outcomes of care can be improved.

Less reduction of psychosocial problems among adolescents with unmet communication needs

Patient-professional communication has been suggested to be a major determinant of treatment outcomes in psychosocial care for children and adolescents. However, the mechanisms involved are largely unknown and no longitudinal studies have been performed. Our aim was, therefore, to assess over the course of 1 year, the impact of patient-centered communication on psychosocial problems of adolescents in psychosocial care, including the routes mediating this impact. We obtained data on 315 adolescents, aged 12–18 years, enrolled in child and adolescent social or mental health care. We assessed patient-centered communication by comparing the needs and experiences of adolescents with regard to three aspects of communication: affective quality, information provision, and shared decision-making. Changes in psychosocial problems comprised those reported by adolescents and their parents between baseline and 1 year thereafter. Potential mediators were treatment adherence, improvement of understanding, and improvement in self-confidence. We found a relationship between unmet needs for affective quality, information provision, and shared decision-making and less reduction of psychosocial problems. The association between the unmet need to share in decision-making and less reduction of psychosocial problems were partially mediated by less improvement in self-confidence (30 %). We found no mediators regarding affective quality and information provision. Our findings confirm that patient-centered communication is a major determinant of treatment outcomes in psychosocial care for adolescents. Professionals should be aware that tailoring their communication to individual patients’ needs is vital to the effectiveness of psychosocial care.

Educating Residents in Behavioral Health Care and Collaboration: Integrated Clinical Training of Pediatric Residents and Psychology Fellows

Pediatric residency practices face the challenge of providing both behavioral health (BH) training for pediatricians and psychosocial care for children. The University of Rochester School of Medicine and Dentistry and Rochester General Hospital developed a joint training program and continuity clinic infrastructure in which pediatric residents and postdoctoral psychology fellows train and practice together. The integrated program provides children access to BH care in a primary care setting and gives trainees the opportunity to integrate collaborative BH care into their regular practice routines. During 1998-2008, 48 pediatric residents and 8 psychology fellows trained in this integrated clinical environment. The program's accomplishments include longevity, faculty and fiscal stability, sustained support from pediatric leadership and community payers, the development in residents and faculty of greater comfort in addressing BH problems and collaborating with BH specialists, and replication of the model in two other primary care settings. In addition to quantitative program outcomes data, the authors present a case example that illustrates how the integrated program works and achieves its goals. They propose that educating residents and psychology trainees side by side in collaborative BH care is clinically and educationally valuable and potentially applicable to other settings. A companion report published in this issue provides results from a study comparing the perceptions of pediatric residents whose primary care continuity clinic took place in this integrated setting with those of residents from the same pediatric residency who had their continuity clinic training in a nonintegrated setting.

Internet resources on the mental health and psychosocial care for children and adolescents

Internet resources on the mental health and psychosocial care for children and adolescents

Psychosocial services in pediatric oncology. Results of a country-wide survey

8 years after the beginning of a german state financed project concerning the psychosocial care of children with cancer and their families 52 german children's oncology units were asked about their present psychosocial staff. The situation of psychosocial care in children with cancer is very good, as most of the staff are employed on a long term basis, financed by the german health insurance companies.

Developmentally appropriate psychosocial care for children affected by parental chemical dependence.

Developmentally appropriate psychosocial care for children affected by parental chemical dependence.

Child life in the 1990s: changing roles, changing times.

This article presents an overview of the many changes that have occurred in the health care delivery system in the United States over the past few decades and their impact on the child life profession. It focuses upon four key factors: changing technology, rising health care costs, risk management and liability, and alternative health care delivery systems. Throughout the discussion, potential threats to the traditional child life model are described, as well as opportunities for the survival, growth, and expansion of the child life profession and its commitment to the provision of high-quality psychosocial care for children in health care settings.

Siblings of paediatric cancer patients: a population at risk.

The psychosocial care of children with cancer has received increasing and welcome emphasis in the medical literature. However, the current and future status of siblings of such patients has been an underestimated area of concern. We examine the general importance of sibling relationships and present the literature regarding siblings of paediatric oncology patients. Donors and recipients of bone marrow transplants are considered specifically. Preliminary results of original research, supported by available published studies, suggest important disturbances in the mental health of siblings. Implications for paediatricians and other health professionals as well as prevention and intervention strategies are indicated.

Psychosocial care of children with cancer and their families: requirements and reality

Psychosocial care of children with cancer and their families: requirements and reality