Acute inpatient palliative medicine in a cancer center: clinical problems and medical interventions--a prospective study

The clinical characteristics and medical interventions of the 100 consecutive cancer admissions to the acute care inpatient palliative medicine unit at the Cleveland Clinic for 2 months are described. Median age was 62 years (range, 31 to 92 years). The male-female ratio was 1:1. Most admissions were referred by hematology-oncology and had prior antineoplastic therapy. Reasons for admission were symptom control and cancer-related complications. Patients underwent invasive diagnostic and therapeutic procedures, hydration, transfusions, radiation, or chemotherapy, or a combination, during their admission. Most were discharged home with hospice care or had outpatient clinic follow-up. The mortality rate was 20%. Aggressive multidisciplinary management of symptoms, disease complications, comorbid conditions, and psychosocial problems were provided. Palliative medicine physicians provided continuity of care in the outpatient clinic and at home. An acute inpatient palliative medicine unit within a tertiary level medical center has a definable and important role in comprehensive cancer care.     

Caring for children and adolescents with cancer: the intrathecal chemotherapy phase

This study aims to explore the experiences of children and adolescents with cancer during the intrathecal chemotherapy phase, by means of a qualitative approach. Empirical data were collected on the basis of semi-structured interviews. Study participants were eleven children/adolescents who received intrathecal chemotherapy, between 07 and 16 years old, from both genders, attended at a hospital school in the interior of S?o Paulo State, Brazil. Results converged towards the following issues: intrathecal routine; fear, pain and relief fantasies and strategies. This study gave access to important information with a view to caring for children/adolescents during the intrathecal chemotherapy phase, which is considered as one of the most stressing situations. With respect to nursing implications, we identified the vital nature of information for children/adolescents with cancer since this makes it possible to minimize uncertainties and negative feelings and makes them collaborate and participate in treatment.     

Analysis of quality-of-care indicators for physically abused children and adolescents

There has still been limited evaluation in Brazil on the care provided to physically abused children and adolescents. The current study aimed to analyze indicators used in research on services that provide care to such children and adolescents. An exploratory study was conducted, selecting five studies in four services: two nongovernmental organizations in two cities in the interior of S?o Paulo State and two organizations, one nongovernmental and the other governmental, in the city of Rio de Janeiro. The analysis aimed to identify the indicators used (structure, process, or result) and which aspect of care they proposed to measure (dynamics of care, treatment adherence, case-resolving capacity, and integration with the network). Eighteen process indicators and nine results indicators were identified. A minimum set of essential indicators is recommended to evaluate care for children and adolescents and their families.     

Fatherhood: The male experience from a gender focus

Pregnant and postpartum women frequently complain about the limited involvement of their partners with their children, beginning in pregnancy. The current study thus aimed to understand men's feelings towards fatherhood during this period of their lives. The research adopted a qualitative approach and a gender-theory focus. The universe included men whose children were being treated at a pediatric outpatient clinic, and data were collected through semi-structured home interviews. Subjects' testimony was analyzed using discourse analysis, the basic principle of which is to recognize the most abstract levels of the text, identified by themes organized in blocks of meaning and allowing the construction of empirical categories. Study subjects' social position towards fatherhood shows that the model that men assume as father-providers coexists with that of the man who seeks to be a "new father", whose affective bond with the son or daughter begins during pregnancy, thus representing a break with traditional fatherhood.     

Rural/Urban Differences in Barriers to and Burden of Care for Children With Special Health Care Needs

PURPOSE: To examine the barriers and difficulties experienced by rural families of children with special health care needs (CSHCN) in caring for their children. METHODS: The National Survey of Children with Special Health Care Needs was used to examine rural-urban differences in types of providers used, reasons CSHCN had unmet health care needs, insurance and financial difficulties encountered, and the family burden of providing the child's medical care. We present both unadjusted and adjusted results to allow consideration of the causes of rural-urban differences. FINDINGS: Rural CSHCN are less likely to be seen by a pediatrician than urban children. They are more likely to have unmet health care needs due to transportation difficulties or because care was not available in the area; there were minimal other differences in barriers to care. Families of rural CSHCN are more likely to report financial difficulties associated with their children's medical needs and more likely to provide care at home for their children. CONCLUSIONS: Examining results from both unadjusted and adjusted odds ratios shows that the burden of care for families of rural CSHCN stems both from socioeconomic differences and health system differences. Policies aimed at achieving equity for rural children will require focusing on both individual factors and the health care infrastructure, including increasing insurance coverage to lessen financial difficulties and addressing the availability of providers in rural areas.     

Trends in der Inanspruchnahme ambulant-ärztlicher Leistungen im Kindes- und Jugendalter

This article provides information on trends in the utilization of outpatient medical care in childhood and adolescence in Germany on the basis of data from two waves of the KiGGS study (prevalences and odds ratios). In the period 2009–2012, 91.9?% (95?% CI 91.1–92.7?%) of children and adolescents used outpatient medical services at least once a year. In the 12 months prior to the interview, 67.9?% (95?% CI 65.9–69.8?%) of the 0- to 17-year-olds consulted a pediatrician and 34.1?% (95?% CI 31.6–36.3?%) a general practitioner. Whereas there was no change in the use of either overall outpatient or general practice medical care compared to 2003–2006, a significant increase of 8.7?% points in the utilization of pediatricians was found. This could be explained by, among other factors, an expansion of pediatric services (additional vaccinations and health screening examinations) in recent years. It may also be related to a significantly greater participation in the health screening program in early childhood (U3-U9 examinations), which was seen especially when comparing the youngest birth cohorts and in children from families with low social status (from U7 onwards). The increased use of health screening examinations can probably be attributed to the invitation, reminding and reporting procedures that have been introduced in recent years. Whereas at KiGGS baseline urban-rural differences in participation in health screening examinations could be seen, these were no longer apparent in KiGGS Wave 1. Similarly, differences between rural and urban regions in the use of general and pediatric medical services have also diminished. Nevertheless, currently children and young people in rural areas use outpatient general medical care to a greater extent than those in urban areas.     

The impact of a complex care clinic in a children's hospital

Background The number of medically complex and fragile children (MCFC) cared for in children's hospitals is growing, necessitating the need for optimal care co‐ordination. The purpose of this study was to describe the impact of a nurse practitioner/paediatrician‐run complex care clinic in a tertiary care hospital on healthcare utilization, parental and primary care provider (PCP) perceptions of care and parental quality of life. Methods MCFC and their parents were recruited for ambulatory follow‐up by the hospital team to complement care provided by the PCP in this mixed methods single centre pre‐ or post‐evaluative study. Parents participated in semi‐structured interviews within 48 h of discharge; further data were collected at 6 and 12 months. Healthcare utilization was compared with equal time periods pre‐enrolment. Parental health was assessed with the SF‐36; parental perceptions of care were assessed using the Larsen's Client Satisfaction Questionnaire and the Measure of Processes of Care; PCPs completed a questionnaire at 12 months. Parental and PCP comments were elicited. Comparisons were made with baseline data. Results Twenty‐six children and their parental caregivers attended the complex care clinic. The number of days that children were admitted to hospital decreased from a median of 43 to 15 days, and outpatient visits increased from 2 to 8. Mean standardized scores on the SF‐36 increased (improved) for three domains related to mental health. A total of 24 PCPs responded to the questionnaire (92% response); most found the clinic helpful for MCFC and their families. Parents reported improvements in continuity of care, family‐centredness of care, comprehensiveness and thoroughness of care, but still experienced frustrations with access to services and miscommunication with the team. Conclusion A collaborative medical home focused on integrating community‐ and hospital‐based services for MCFC is a promising service delivery model for future controlled evaluative studies.     

Chronic dependence on mechanical pulmonary ventilation in pediatric care: a necessary debate for Brazil's Unified Health System

People with prolonged dependence on mechanical ventilation require permanent care and the use of equipment that can result in longer term hospital internment. This can lead to difficulty of access for patients with acute injuries, as well as personal difficulties and stress with reduced quality of life for their families or caregivers due to such longer hospital internment. This critical review of publications dealing with dependence on mechanical ventilation among children and adolescents aimed at making information organized in a systematic manner available in order to support discussion on the subject. It should be borne in mind that changes in epidemiological profile and growing technological access determine needs such as intensive therapy hospital beds and complex home care for chronic patients, which still have limits of supply and regulatory restrictions in the Brazilian public health system.     

Intrafamily violence during adolescence in the city Puno--Peru

This epidemiological case-control study aimed to describe the epidemiological profile of intrafamily violence against pregnant and non pregnant adolescents. The study was carried out at the outpatient clinic for central care to adolescents of the Regional Hospital Manuel Nu?ez Butrón and at secondary schools in the city of Puno--Peru. The results were obtained by means of statistical analysis, verifying statistically significant differences for the occurrence of physical violence (p = 0.008) and sexual-rape violence (p = 0.01). The majority of the adolescents were victims of different types of aggression, executed either by members of the family (intrafamily) or by individuals outside the family (extrafamily). The most frequent causes associated to this aggression were disobedience, late arrival at home, having friends/boyfriends and doing domestic chores slowly.     

The meaning of ‘place’ in families’ lived experiences of paediatric outpatient care in different settings: A descriptive phenomenological study

Health service reforms in the United Kingdom have sought to ensure that children and young people who are ill receive timely, high quality and effective care as close to home as possible. Using phenomenological methods, this study examined the experience and impact of introducing new, community-based paediatric outpatient clinics from the perspective of NHS service-users. Findings reveal that paediatric outpatient ‘care closer to home’ is experienced in ways that go beyond concerns about location and proximity. For families it means care that ‘fits into their lives’ spatially, temporally and emotionally; facilitating a sense of ‘at-homeness’ within the self and within the place, through the creation of a warm and welcoming environment, and by providing timely consultations which attend to aspects of the families’ lifeworld.     

Taking the call-bell home: a qualitative evaluation of Tele-HomeCare for children

Tele-HomeCare (THC) delivers health care at home using telephone technologies. A THC service was developed as an adjunct to existing hospital and community care systems. It connected healthcare providers to children and families at home, during the initial transition from hospital to home, using video-conferencing phones and remote vital signs monitors. The goal was to support the transition from hospital to home, for children with subacute healthcare needs. This paper reports the qualitative evaluation of THC and describes the experiences of families supported by THC. A total of 16 mothers, four fathers and two adolescents from 16 families participated in a series of interviews conducted before, during and after THC. The interviews focused on the impact of THC on the children, on the families, and on their overall healthcare experience. Analysis of their accounts identified three subthemes: the stable child, a sense of security, and the healthcare-proficient parent. These subthemes were consistent across all time points and participants. Together they contributed to the overall effect of THC: the timely reunification of the family at home. THC was consistently reported to be an important resource that supported children and families during the transition from hospital to home. The benefits to children and families observed in this study may have also been a consequence of returning to their home environment, since THC allowed these children to be discharged home at a much earlier period. However, our findings are consistent with previous reports of the benefits of THC. Thus, THC is a successful method of healthcare service delivery that enables a safe return home with professional support provided remotely.     

Profile of public dental care for children and adolescents in São Luís, Maranhão State

This profile of public dental care for children/adolescents in S?o Luís, Maranh?o State, Brazil, is based on a survey conducted through interviews, designed to identify these services and help upgrade Health Services available in this city. It describes the pediatric dental care available and the age groups attended, the qualifications of the practitioners involved, the types of treatment for primary and permanent teeth and oral health education programs run at the Municipal Healthcare Units with dental facilities, analyzed through visits and structured interviews. The findings show that dental care was available for children/adolescents (mainly between 6 and 12 years old) at 91.1% of the Healthcare Units offering daily and universal care (65.75%), as well as at those whose services are limited to certain specialties and/or specific days (34.15%). All the public Healthcare Units offered surgical treatment for permanent teeth. Fillings are used more for permanent teeth than primary teeth. Among the public Healthcare Units, 25 (55.5%) did not offer or run oral health programs. At most (75.5%) of the Units visited, dental treatment for children and adolescents is limited to basic care and directed mainly to permanent teeth. The traditional welfare model of providing care as freely demanded remains in place.     

Maternity in adolescence: a challenge to face

This study acknowledged how maternity interfered on the life project of adolescent mothers. Data were collected from a maternity hospital in a city located in the countryside of S?o Paulo state, Brazil, over a three-month period. One hundred and forty adolescents participated in this study, 77% of them were in a marital relationship. Most adolescents had elementary school education, 31.4% were attending school when they became pregnant. At the end of pregnancy, 60% quit school in order to take care of their children. Those who went back to school could count on support from their families. Most of them will remain out of the labor market and those who do work rely on family support for the care of their children. Results showed the need to reorganize services with differentiated methodological approaches aiming at achieving the precepts provided in the guidelines for sexual and reproductive rights.     

The PedsQL™ Family Impact Module: Preliminary reliability and validity

Background

The PedsQL? Measurement Model was designed to measure health-related quality of life (HRQOL) in children and adolescents. The PedsQL? 4.0 Generic Core Scales were developed to be integrated with the PedsQL? Disease-Specific Modules. The newly developed PedsQL? Family Impact Module was designed to measure the impact of pediatric chronic health conditions on parents and the family. The PedsQL? Family Impact Module measures parent self-reported physical, emotional, social, and cognitive functioning, communication, and worry. The Module also measures parent-reported family daily activities and family relationships.

Methods

The 36-item PedsQL? Family Impact Module was administered to 23 families of medically fragile children with complex chronic health conditions who either resided in a long-term care convalescent hospital or resided at home with their families.

Results

Internal consistency reliability was demonstrated for the PedsQL? Family Impact Module Total Scale Score (α = 0.97), Parent HRQOL Summary Score (α = 0.96), Family Functioning Summary Score (α = 0.90), and Module Scales (average α = 0.90, range = 0.82 – 0.97). The PedsQL? Family Impact Module distinguished between families with children in a long-term care facility and families whose children resided at home.

Conclusions

The results demonstrate the preliminary reliability and validity of the PedsQL? Family Impact Module in families with children with complex chronic health conditions. The PedsQL? Family Impact Module will be further field tested to determine the measurement properties of this new instrument with other pediatric chronic health conditions.

     

A Home Care Program for Children with Chronic Illness

Pediatric Home Care (PHC) of Albert Einstem College of Medicine was designed as a special ambulatory care unit for children who are seriously or chronically ill and whose needs were not being met successfully through conventional programing Services include monitoring the patient's care, delivering direct services in the home, clinic, and hospital, teaching therapeutic programs to the family and patient, coordinating services, patient advocacy, health education, and supportive counseling Each patient has a core team consisting of a generalist pediatrician, a PNP, and the patient's family Visits are provided in the patient's home as needed, as well as in the traditional locations of the clinic, the inpatient units, and the PHC office The program accepts patients with serious medical problems and who face any of a series of other difficulties, including especially complex management problems that cannot be handled well in the customary outpatient settings, unstable family settings, or extended hospitalizations Because it is not restricted to any single type of disease, the PHC provides a model that is applicable in a wide range of medical and community settings Results of a program evaluation show that PHC is an effective intervention that has positive mental health outcomes and improves satisfaction with care.     

Doing things together: adolescent health and family rituals

STUDY OBJECTIVES: (1) To describe the union and life cycle of family rituals, such as specific habits of sharing daily meals, special events or other family activities, and (2) to analyse the relation between the practice of family rituals and the use by adolescents of mental health related ambulatory care services. DESIGN: A cross sectional study. SETTING: A public mental health care outpatient clinic, secondary educational centres and Alicante University (School of Social Workers and Nursing School) in Spain. PARTICIPANTS: A total of 282 living at home youngsters were included in the study. The case group, n=82, was sequential and consecutively drawn from the first consultation in a public mental health outpatient clinic attending a downtown area of Alicante. The comparison group (n=213) was made up of a conglomerate from various educational centres in the same metropolitan area. MAIN RESULTS: There was a significant difference (p=0.027) between the frequencies with which parents ate together with their offspring in the two study groups. The families of the adolescents comparison group significantly (p=0.00007) shared more family celebrations than the case group-also, the extended family was included more frequently. Moreover, differences between both groups were found in other activities and situations-adolescents in the case group reported carrying out less family activities than the adolescents in the comparison group (p=0.00001). The lower level of satisfaction in the adolescent's perception of family function led to a higher probability of presenting mental health complaints (p=0.00001). CONCLUSIONS: The youngsters with mental health complaints ate less frequently with both parents than the youngsters in the comparison group. They also shared less activities and practised less family rituals-union and life cycle-than the families of the youngsters in the comparison group, and showed a lower level of satisfaction in perceived family function.     

Utilization of oral health care for Down syndrome patients

OBJECTIVE: From a perspective of comprehensive care, the purpose of the study was to evaluate factors associated to dental care provided to Down syndrome children and adolescents. METHODS: A cross-sectional study was carried out including 112 pairs of mothers/Down syndrome children aged between 3 and 18 years who attended a public hospital genetics clinic in Rio de Janeiro, Southeastern Brazil, in 2006. Dental care was not provided at the clinic. Data were collected through a questionnaire administered to the mothers and oral examinations of their children. Multiple logistic regression was used for data analysis. The dependent variable was "dental care of the Down syndrome child or adolescent" and the independent variables included demographic, socioeconomic and behavioral characteristics. RESULTS: Most children (79.5%) had had at least one dental visit (90% CI: 72.3; 87.8). Dental experience of the children was associated to the following variables: mothers who reported being advised by their children's health provider to take them to the dentist's (OR=6.1 [2.5; 15.1]); children with prior history of surgery (OR=2.5 [0.9; 7.1]); and age between 12 and 18 years (OR=13.1 [2.0; 86.9]). CONCLUSIONS: Dental care provided to Down syndrome children and adolescents was associated to advice given by their health providers, a part of comprehensive care.