The role of the pediatrician in rural emergency medical services for children

In rural America, pediatricians can play a key role in the development, implementation, and ongoing supervision of emergency medical services for children. Pediatricians may represent the only source of pediatric expertise for a large region and are a vital resource for rural physicians (eg, general and family medicine, emergency medicine), other rural health care professionals (physician assistants, nurse practitioners, emergency medical technicians), and local emergency medical services medical directors. They can provide education about management and prevention of pediatric illness and injury; appropriate equipment for the acutely ill or injured child; and acute, chronic, and rehabilitative care. In addition to providing clinical expertise, the pediatrician may be involved in quality assurance, clinical protocol development, and advocacy and may serve as a liaison between emergency medical services and other entities working with children (eg, school nurses, child care centers, athletic programs, and programs for children with special health care needs).     

Filling the GAPS: description and evaluation of a primary care intervention for children with chronic health conditions.

OBJECTIVES: Consistent with the "medical home" model, the GAPS program was developed to provide expanded care for children with a range of chronic health conditions within the context of primary care pediatric offices. Parents, pediatricians, and representatives from local Title V agencies participated to assess the child's and family's needs and to identify ways of addressing them. METHODS: Eleven pediatricians in 5 pediatric practices participated in the 4 main activities of the GAPS project: a) needs assessment; b) planning meeting among parents and pediatricians; c) practice-based advisory group; and d) Department of Public Health consultation. A telephone interview of parents and 2 needs assessment questionnaires completed by families were the 2 evaluation methods used. RESULTS: Parents were able to meet desires for "information" and "specific help." Moderate amounts of success were reported for meeting "contact" and "counseling" needs. Parents' explanations of unmet needs included lack of follow-through in obtaining services, unavailability of services, change of mind regarding needs, and pragmatic barriers. Socioeconomic status, the diagnosis and severity of the child's condition, and maternal psychological status were not significant predictors of success in families' ability to get their needs met. CONCLUSIONS: Active collaboration among parents, pediatricians, and Department of Public Health staff helps to ensure comprehensive coordinated care for families of children with chronic health conditions. Considerable challenges remain in implementing effective medical homes.     

The general pediatrician as care coordinator for children with chronic illness

As the number of children with chronic illness increases due to advances in medical technology, general pediatricians are faced with the challenge of providing continuing care for such patients. These children and their families are most in need of a care coordinator to guide them through the complexities of obtaining optimal care in all aspects: medical, emotional, social, and developmental. The primary pediatrician is logically positioned to assumed the role of care coordinator. This undertaking requires a knowledge of the needs of such children and their families, an ability to interact with other professionals as member of a team, a sensitivity to the overall functional status of the child and family, and a commitment of a large amount of time and effort. Although these skills are rarely taught during residency training, they can be acquired through continuing education, thereby allowing the pediatrician to experience the satisfaction that derives from helping someone truly in need.     

Pediatricians’ Knowledge,Attitudes, and Practice Patterns Regarding Special Education and Individualized Education Programs

ObjectiveThe medical community has called upon pediatricians to be knowledgeable about an individualized education program (IEP). We sought to: 1) evaluate pediatricians’ knowledge and attitudes regarding special education; 2) examine the relationship between perceived responsibilities and practice patterns; and 3) identify barriers that impact pediatricians’ ability to provide comprehensive care to children with educational difficulties.MethodsSurveys were mailed to a national sample of 1000 randomly selected general pediatricians and pediatric residents from October 2010 to February 2011.ResultsThe response rate was 47%. Of the knowledge items, respondents answered an average of 59% correctly. The majority of respondents thought pediatricians should be responsible for identifying children who may benefit from special education services and assist families in obtaining services, but less than 50% thought they should assist in the development of an IEP. The majority of pediatricians inquired whether a child is having difficulty at school, but far fewer conducted screening tests or asked parents if they needed assistance obtaining services. Overall, the prevalence of considering a practice a pediatrician’s responsibility is significantly higher than examples of such a practice pattern being reported. Financial reimbursement and insufficient training were among the most significant barriers affecting a pediatrician’s ability to provide care to children with educational difficulties.ConclusionsIn order to provide a comprehensive medical home, pediatricians must be informed about the special education process. This study demonstrates that there are gaps in pediatricians’ knowledge and practice patterns regarding special education that must be addressed.     

Inadequacy of health care for the nation's chronically ill children

There are approximately 750,000 children in the United States with a severe chronic illness. The organization of health services for these children is characterized by diversity, fragmentation, and high expense. Moreover, the sources of financial support for this care typically leave many gaps in coverage. The families of these children face many years of mounting medical bills with little help in sight. A need exists for the establishment of a national policy that will provide an organized system of health care for the nation's chronically ill children. This policy must address current inadequacies and provide comprehensive ongoing care for these children and their families.     

First step in obtaining child health care: selecting a physician

To investigate the process by which families identified and selected their children's current physicians, a close-ended questionnaire was administered to 750 families in a mail panel. Of 630 responses (84.0%), 244 had children in the home; 229 (93.9%) identified a regular and current physician for their youngest child. However, parents did not spend much time or energy selecting a physician and rarely explored medical expertise in their decisions. Families averaged 1.2 sources of information consulted per decision; few considered more than two physician choices and infrequently considered alternative types of doctors (pediatricians v family or general practitioners). Selection priorities ranked in order of importance concerned parents' perceptions of their doctors' communication skills, accessibility, and quality as determined by recommendations of friends or physicians. Parents appeared less concerned with issues of cost and convenience. Families selecting pediatricians differed from those selecting family and general practitioners in sources of information used and selection priorities. The survey also identified 84 families who had changed or seriously considered changing the physician who was caring for their youngest child. The most frequent dissatisfaction was the perception that an illness was not being managed adequately, followed by believing that the doctor or staff were rude or unconcerned. Families unhappy with pediatricians expressed different reasons from those unhappy with family or general practitioners. The study results provide insight about the first step in obtaining child health care services, a relatively unexplored area of patient decision making.     

The impact of child care problems on employment: findings from a national survey of US parents

ObjectivesMany parents struggle to secure high-quality, consistent child care services, and this may impact employment decisions. Our objectives were to determine the type of employment problems that parents attribute to difficulties in securing child care and to identify whether having a child with behavior problems and/or chronic illness is independently associated with child care–related employment problems in the United States.MethodsThis study included parents of children aged 0 to 13 years by using household-level sampling from the nationally representative random digit dial survey Gallup panel. We included 9 measures of child care–related employment problems. Poststratification weights were applied based on census region, income, and education by using Stata’s poststratification commands.ResultsA survey was conducted of 1431 households with at least 1 parent employed. Overall, 46% of households reported 1 or more child care–related employment change. Being absent from work (21%) and changing the work schedule (27%) were the most prevalent changes reported. Two-parent households were significantly less likely to report child care–related employment changes compared with single parent households. Households with a stay-at-home parent were less likely to report child care–related absenteeism but more likely to report recently quitting work compared with households without a stay-at-home parent. Having a child with behavior problems or a serious chronic health condition was associated with double to triple odds of many child care–related employment problems.ConclusionsChild care–related employment problems are common among families with a child with chronic illness or behavior problems. These findings support the need for pediatricians and policy makers to strive for the implementation of more parent-friendly labor conditions.     

Helping families raise children with special health care needs at home

One goal of Healthy People 2010 is to reduce the number of people with disabilities in congregate care facilities, consistent with permanency-planning principles, to 0 by 2010 for persons aged 21 years and under (objective 6-7). Congregate care, in this regard, is defined as any setting in which 4 or more persons with disabilities reside, regardless of whether the residence is located in the community, such as a school, group home, nursing facility, or institution. Although this particular public health objective may reflect an unfamiliar concept for some pediatricians, the American Academy of Pediatrics supports the goals and objectives of Healthy People 2010 as well as the medical home and the provision of community-based, culturally effective, coordinated, and comprehensive care for children with special health care needs and their families. To advise families caring for children with special health care needs effectively, the pediatrician should be familiar with the principles of permanency planning and well informed of local family-support services. The pediatrician should also work with the family to identify the range of long-term supports and services available for their child. These supports may include respite for biological families as well as various additional parenting models such as shared parenting, foster care, alternate parents, and adoption. Although family-based supports are preferable, families may consider other out-of-home placements including group homes, placement in a nursing facility, or other forms of institutional care when sufficient family-based services are not available. Once all the options are understood, issues regarding quality of care can be individualized and judged by the parent or guardian, in close collaboration with the pediatrician and other professionals with expertise in permanency planning and long-term supports and services. The purpose of this clinical report is to educate physicians on the philosophy of providing a permanent family environment (permanency planning) for all children, including those with special health care needs, and the importance of adequate and accessible community services to support and maintain the well-being of all family members.     

Primary care of previously institutionalized retarded children

Medical care of retarded children is a responsibility of pediatricians that is seldom discussed. Past practices of isolating these children in institutions and caring for them in special multidisciplinary clinics are fading. The medical experience with 48 retarded children, the problems that they present, and the system of care that was developed to meet their special needs are described. Previous medical care was often found to be lacking or inappropriate. The spectrum of morbidity resembles that of a general pediatric population although chronic conditions are much more prevalent. Utilization of primary care and consultative services is much higher than for a nonretarded population. Much time is required for their care; a great deal of time is devoted to advising caretakers and schools and to coordinating health services. A prepaid system of care using a health associate as the primary provider was developed, and has been an effective means of providing health care to these children.     

Providing care in chronic disease: the ever-changing balance of integrating palliative and restorative medicine

Caring for children who have a chronic life-limiting illness can be emotionally and physically challenging. Just as families may struggle with whether they are making the right decisions, care providers struggle with whether they are giving the right advice, predicting the medical course correctly, and making the correct medical decisions. Uncertainty is a constant for the family and the care provider. The willingness of the care provider to develop a relationship with the family that involves continuing communication and re-evaluation of the child's condition and the family's perspective can relieve some of the emotional and physical suffering associated with a chronic disease and support the family in times of hope and grief.     

Emergency Care of the Technology-Assisted Child

As more special needs children reside in community settings, emergency physicians will continue to play an important role in the overall care of these children. To this end, emergency medical services providers and ED physicians should have a familiarity in recognizing and managing acute complications of chronic disease states and in troubleshooting equipment problems. In addition to assisting with acute crises, the emergency provider can be instrumental in helping families with CSHCN integrate successfully into the community by reminding families of important measures that they should take to optimize their child's medical care. In particular, families should be encouraged to have medical summary information and go-bags wherever they travel and to develop written emergency care plans in concert with their primary care provider. The Emergency Information Form co-developed by the American Academy of Pediatrics and the American College of Emergency Physicians is an excellent resource for families with CSHCN [45]. In addition, it is important for families of chronically ill and technology-assisted children to notify community emergency medical services departments and local utility companies of their residence [5]. Together, the medical community and families can partner to ensure optimal medical care and community integration of special needs children.     

Behavioral aspects of chronic illness in children and adolescents

Despite the detail that is provided on the potential negative outcomes of children and families who have chronic illnesses, most of these families show admirable resilience. Most children adjust to their illnesses within 1 year and most families achieve healthy stable functioning with accommodations for the illness. The challenge of adjusting to a chronic illness can provide an excellent opportunity for a child or adolescent to master crucial skills, such as emotion regulation and problem-solving. Mastery of these skills can engender strong self-esteem and confidence. As our knowledge about the predictive factors for positive behavioral outcomes increases, the pediatrician can be in the position to minimize the negative behavioral aspects of chronic illness and facilitate adjustment. Attention to the behavioral aspects of chronic illness in the three critical areas of psychosocial adjustment of the patient, adjustment of the family, and adherence to regimens, allows pediatricians to play a crucial role in prevention, early identification, and early interventions. We hope that the material that is included in this review provides a starting point for clinicians to understand and to begin to assess these critical factors in chronic illness in children and adolescents.     

Culture and the care of children with chronic conditions: their physicians' views.

BACKGROUND: Little is known about physicians' perceptions of the influence of culture on the health care of children with chronic and disabling conditions. OBJECTIVE: To identify physicians' perceptions of the impact of the family's ethnocultural background on the health care of school-aged children with chronic conditions and recommendations for improving care. DESIGN: Qualitative study in 2 midwestern metropolitan areas. SETTING: General community. PARTICIPANTS: Convenience sample of 52 physicians nominated by 60 African American, Hispanic, and European American families of school-aged children with chronic conditions. METHODS: In-depth interviews were conducted with the physicians. Content analytic techniques were used to analyze the data. RESULTS: In 44% of the responses, the physicians reported that ethnocultural background did not influence the care the child received, noting that comparable care was provided to all of their patients. In 14% of the responses, the effect was unknown. The overall effect was negative in 26% of the responses and positive in 16%. Physicians' recommendations focused on 4 topics: improving the training and education of health care professionals and families; ensuring good communication between the child, family, and health care professionals; supporting families; and improving the access and provision of services for children from diverse cultural backgrounds. CONCLUSION: Although the majority of participants reported that ethnocultural background did not affect the care the child received from the health care system, physicians' recommendations reflected awareness of the influence of culture on the care of children with chronic conditions and the need for further training on this issue.     

Stress and coping in families with ill or disabled children: application of a model to pediatric therapy

Chronic illness or disability of a child is a specific stressor affecting the entire family. To analyze the factors influencing the family's stress response, the ABCX and Double ABCX Models of Family Stress are reviewed. Four factors of the model which are particularly relevant when applied to the experience of the family with a chronically ill or disabled child are discussed: the specific characteristics of the child's disorder, the family's perception of the stressor, the chronicity of the problem, and the social network of the family. Therapists having frequent and intimate contacts with families may benefit from knowledge of the factors of the model to enhance their ability to reduce family stress. Specific therapist roles in reducing stress are respecting the parents' emotional and social needs, interpreting and anticipating medical and developmental events, and facilitating functional adaptation of the child. Health care professionals in pediatrics frequently encounter families under tremendous stress related to serious health problems in a child. The professionals' words and actions, their management of the family and the child, their responses to the parents' behaviors all are potential sources for ameliorating or increasing stress on the family. Professionals who deal with children with chronic disabilities or illnesses, and with their families, must empathize with the experience of parents in the foreign world of medicine and disability, respect the immediacy and gravity of their concern, and tolerate their occasional confusion and irrational behavior. Physical therapists and occupational therapists in pediatrics have both the opportunity and responsibility to enhance the effective coping of parents who struggle to deal with their child's difficulties and the stress their child's problems place on the entire family. To be effective, therapists must understand the factors and processes of family coping. Models which structure family response to stressors and coping efforts have been developed to facilitate analysis of the complex processes. Hill developed the original ABCX model of family stress, which McCubbin and Patterson expanded into the Double ABCX Model of Adaptation, identifying factors affecting a family's adjustment to a severe ongoing stressor (Figure 1). The expanded model includes the family's adjustment to cumulative effects of the stressor after the impact of the original crisis. Both the original ABCX and the expanded Double ABCX models identify variables which account for observed differences among families' adaptations to stressful situations.     

Family adaptation in childhood chronic illness: a case report

When a child is diagnosed with a chronic illness, families adapt by drawing on the perceptions of individual family members, on the family's existing resources, and on new resources. This method of family adaptation has been described by McCubbin and Patterson in their Family Adaptation Model. The Family Adaptation Model is illustrated through a case study of a family's experience with type I diabetes. The model and case study yield a list of nursing assessments and interventions for families with a chronically ill child.     

Managed care and children with special health care needs.

Providing care to children with special health care needs within a managed care environment presents special challenges for providers and parents alike. The goal of managed care is to contain costs by encouraging or requiring members to obtain services through a designated network. In managed care programs, children and families may experience limited access to specialized care and services, along with decreased fragmentation inherent in fee-for-service care. For providers, managed care creates financial risk while offering opportunities for acquiring new skills and knowledge. The primary care provider assumes a central role in creating a medical home that links the child and family to a single provider who is an ongoing resource and partner in care. To provide comprehensive, coordinated, family-centered care, the medical home provider must learn about a variety of services available within the community and guide parents in learning how to access the services that meet their child's needs. Pediatric nurse practitioners can play a significant role in ensuring that children receive the most appropriate care.     

The changing pattern of primary pediatric care: update for one community

The changing pattern of pediatric practice in the Rochester, New York, community between the late 1960s and the late 1970s is described, and some extrapolations for the next decade are discussed. The child population shrunk from 243,000 in 1970 to 192,000 in 1980 and is expected to decrease further to 160,000 in 1990, possibly stabilizing at 140,000 by 2000. The number of pediatric beds as well as occupancy rates declined, but the number of full-time equivalent practicing pediatricians increased slightly. One third of them are now practicing out of neighborhood health centers or health maintenance organizations. Problems of manpower shortage and inadequate access to care for the inner city residents have long since disappeared. Utilization rates by race and socioeconomic area are similar once the children enter the care system. For "well child" care, however, there may still be lower utilization for blacks, especially for older children. The high "market penetration" for child health services by pediatricians, and the high proportion of well child visits (40%) among all visits, may be atypical for the nation as a whole, but is probably indicative of what pediatric care elsewhere will be in the future. Fewer children, and less acute care per child, will allow pediatricians to focus increasingly on preventive, developmental, and psychosocial needs.     

Provision of educationally-related services for children and adolescents with chronic diseases and disabling conditions. American Academy of Pediatrics. Committee on Children with Disabilities

Children and adolescents with chronic diseases and disabling conditions often need related services. As medical home professionals, pediatricians can assist children, adolescents, and their families with the complex federal, state, and local laws, regulations, and systems associated with these services. Expanded roles for pediatricians in Individual Family Service Plan, Individualized Education Plan, and 504 Plan development and implementation are recommended. The complex range of federal, state, and local laws, regulations, and systems for special education and related services for children and adolescents in public schools is beyond the scope of this statement. Readers are referred to the policy statement "The Pediatrician's Role in Development and Implementation of an Individual Education Plan (IEP) and/or an Individual Family Services Plan"(1) by the American Academy of Pediatrics for additional background materials.