Children and adolescents in outpatient chemotherapy: nursing implications

Hospitalization was common in the care to the child with cancer. However, a great focus is being given to dehospitalization, whose viability occurred through the outpatient clinic follow up, the outpatient clinic chemotherapy, the day-hospitals and/or home care. This paper aims at analyzing the difficulties that the families face at the home environment when their children or adolescents are submitted to the outpatient clinic chemotherapy. The study was developed at the chemotherapy room of the University of S?o Paulo Hospital at Ribeir?o Preto School of Medicine and the empirical data were collected through semi-structured interviews with the children's parents in January and February, 2000. Results showed the following difficulties: changes in family daily life, health team inefficient communication; self-image alteration and chemotherapy side effects. This work enabled access to information that is of real interest in the care to children and/or adolescents with cancer and their families. Based on empirical data, authors elaborated a booklet on home 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.     

First experiences with intraperitoneal chemotherapy

Four patients suffering from malignant ascites were treated with the following method: peritoneal lavage and consequent injection of Mitomycin-C (20 mg/body surface m2) was performed for six hours via a catheter put into the peritoneal cavity according to Seldinger's method. One patient died three weeks later because of involvement of other organs by the disease. The other patients have been followed-up ever since for 7, 4 and 3 months now. In their case there was no need for repeated intraperitoneal chemotherapy. There were no side-effects nor complications detected.     

Exciting but exhausting: experiences with participatory research with chronically ill adolescents

Background  Adolescents with chronic conditions are major users of paediatric hospitals, but seldom participate in the evaluation of services or in research. Little is known about the usefulness of the participatory approach in adolescent health research.
Objective  To evaluate the feasibility, benefits and limitations of a participatory research (PR) project involving chronically ill adolescents as co-researchers.
Design, setting and participants  Nine adolescents, aged 15–17 years, acted as co-researchers in a hospital-based PR project. They co-developed an interview protocol and during a disco party held for this purpose interviewed each other and 25 fellow patients (12–19 years). They provided advice on the draft report and participated in the dissemination of the results, but were not involved in the design of the project or analysis of results.
Results  Involving adolescents in participatory health research was feasible and appreciated by researchers and youth alike, but had its drawbacks too. The peer-research attracted few participants, the interviews lacked depth and did not yield substantial new insights. Maintaining a high level of participation of the chronically ill co-researchers also proved difficult.
Conclusions  Adolescents with chronic conditions like to have a say in the design and evaluation of hospital services. But their participation as co-researchers demands ample resources from all parties involved without automatically improving research quality. PR does not seem the most effective and efficient way to make services more responsive. We therefore recommend further exploration of other creative and sustainable ways for involving youth in health-care service development and innovation.     

Transition to adult care: experiences and expectations of adolescents with a chronic illness

Background Effective means of transitioning adolescent patients with chronic illness from paediatric to adult medical care are poorly documented and supported by limited evidence. The purpose of this study is to describe expectations and concerns of adolescents with chronic illness regarding transition from subspecialty paediatric to adult‐centred care during the transition process in order guide effective programme design and implementation. Methods Qualitative content and thematic analysis of semi‐structured individual interviews with 22 adolescents with chronic illness, including cystic fibrosis, sickle cell disease, juvenile rheumatoid arthritis, and inflammatory bowel disease. Interviews took place at 1–3 time points over an 18‐month study period. Results Transition topics included: timing of transfer to adult care, the transition process, attitudes about transition, and factors that might aid transition. During the study period, one‐third of participants made the transition to adult‐oriented health care. All participants who had transitioned to adult‐oriented care reported participating in a structured transition programme. Concerns of those who had not initiated the transition process centred on re‐establishing relationships and bringing a new team ‘up to speed’. Most adolescents anticipating transfer to adult care identified only downsides and felt unprepared to transition at the time of the interview. Subjects who had transitioned noted benefits of the adult‐oriented system, even if they had been ambivalent prior to transfer of care. Participants suggested that earlier discussions about transition, opportunities to meet new healthcare teams and visits to adult‐oriented venues prior to transition might aid in the transition process. Conclusions Subspecialty paediatric providers should anticipate common fears and concerns of adolescents and discuss the benefits of transfer to adult‐oriented care. Further evaluation of existing transition programmes is an area for future study and is necessary for improvement of the continuum of care for adolescents with chronic medical conditions.     

Children with Autism Attending Preschool Facilities: The experiences and perceptions of staff

The home literacy environment (HLE) provided to very young children was examined. A parent with a child under 19 months of age (N = 262) completed a series of checklists and surveys designed to assess literacy experiences and opportunities within the home. In general, children were exposed to a wide range of literacy activities and experiences, but many had relatively little literacy exposure. Shared reading was the most common literacy activity. Activities specifically intended to teach literacy knowledge or skill were in place for many children. Children were much more likely to see mothers engaged in literacy activities than fathers. The implications of these findings for conceptualising the HLE and designing HLE interventions are discussed.     

Children with Autism Attending Preschool Facilities: the experiences and perceptions of staff

Increasing numbers of children are being identified from age 2 years onwards as having autistic spectrum disorders. The majority of parents aspire for their child to attend mainstream education facilities, and many already do so. However, there is limited knowledge about the needs of preschool personnel if they are to support the inclusion of children with autistic spectrum disorders. In particular, what are their experiences of taking such children, what supports are available to them and what help do they require? This survey of fiftysix staff working in thirty-eight preschools of various types in the Greater Belfast area found that a sizeable number had the experience of taking with children with autistic spectrum disorders and that staff do receive some advice and support from a range of professionals. Nearly all were committed to enrolling such children in the future but they felt that a lack of staffing could preclude this. A majority of staff felt they have had inadequate or no training to equip them to meet the children's particular needs, and they report a lack of knowledge and skills to help these children. The implications of these results are discussed in terms of the specific skills required by staff to manage these children and promote their learning; the professional support required and the contribution this could make to the preschool and the training requirements of staff working on these setting in either a paid or voluntary capacity.     

Children and adolescents living with HIV positive parents: Emotional and behavioural problems

Abstract

This study explores the emotional and behavioural problems in children living with an HIV-positive parent, and identifies specific high-risk and protective factors for their psychological well-being. Data were collected on 718 parents living with HIV and on 1136 HIV-affected children in a European multi-centre study (EUROSUPPORT IV) adopting a cross-sectional and retrospective study design. Sociodemographic characteristics, HIV-related stressors, variables relating to caregiving and outcome variables relating to family functioning and children's symptoms were assessed using a self-reported questionnaire. Results indicated a low level of parental HIV disclosure to children, and an elevated level of behavioural symptoms in HIV-affected children as reported by parents. Children had experienced a high degree of distressing life events. In multivariate analysis, perceived healthy family functioning emerged as protective for a low degree of behavioural symptoms in children and adolescents. The results call for a shift towards family-centred service delivery in HIV care and counselling. Service implications are discussed in the light of increasing numbers of women and couples living with HIV who become parents and need tailored support in facing the challenges of being a caregiver living with HIV.     

Children talking: emerging perspectives and experiences of cigarette smoking

Despite efforts to prevent the onset of smoking, the rate among older children remains high. In this article, the authors report on a longitudinal, qualitative study of 11 to 16-year-old children describing children's construction of what it means to be a smoker, the reasons given for children smoking, and their views of smoking behavior. Findings indicate that children adopt broad interpretations of what constitutes smoking behavior; although they strongly disapprove of children who smoke, they are less disapproving of older children or adult smokers and are increasingly tolerant of smoking behavior as they get older. Children's disapproval of smoking acts as a protective mechanism against smoking for younger participants. Participants' broad interpretation of what it means to be a cigarette smoker, their association of smoking with adulthood, and their increasing tolerance of and exposure to smoking behavior as they move into adolescence appears to increase susceptibility to becoming cigarette smokers.     

Growing up under the gun: Children and adolescents coping with violent neighborhoods

Inner-city children are exposed to an environment fraught with violence. They are frequent victims of violence and even more frequent witnesses of violence. Exposure to violence can provoke a variety of responses in exposed children such as crying, tremors, withdrawal, etc. In addition to causing such acute stress reactions, exposure to violence can result in more lasting symptoms—including sleep disturbances, nightmares, anxiety, depression, and recurrent intrusive memories of the traumatic event. In many of these children such symptoms occur in combination and persist for long enough to justify a diagnosis of post-traumatic stress disorder. Children are most likely to cope successfully with community violence if they have an internal locus of control, a strong sense of self-efficacy, and an optimistic and planful attitude toward the future. Parental support is particularly important in helping children to cope with stress. Professional interventions in the family and school can help children to cope with such trauma. Such interventions attempt to help children to cope with violent situations by construing the situations in positive ways, by working toward attainable goals and by not allowing them to be overwhelmed by their fear and frustration, thus preventing the trauma from permanently affecting them.     

Perceived risks and benefits of smoking: differences among adolescents with different smoking experiences and intentions

BACKGROUND: Explanations of adolescent smoking often make reference to adolescents' beliefs that they are invulnerable to harm. However, empirical examination of whether adolescents do acknowledge risks. Further, few studies have considered perceived benefits in adolescents' behavioral decisions. This study examined perceived smoking-related physical and social risks and benefits between adolescents who have vs. have not smoked and do vs. do not intend to smoke. METHODS: Three hundred and ninety-five students (mean age = 14.0) completed a survey concerning their smoking experiences, intentions, and perceived risks and benefits of smoking. RESULTS: Adolescent smokers and those who intend to smoke estimated their chance of experiencing a smoking-related negative outcome as less likely than did nonsmokers and non-intenders. Smokers and intenders also reported the chance of addiction as less likely than did others. In contrast, adolescent smokers and intenders perceived the chance of experiencing a smoking-related benefit as more likely than did nonsmokers and non-intenders. CONCLUSIONS: The data suggest that rather than solely focusing on health risks as a way to deter adolescent smoking, the role of perceived social risks and benefits in adolescents' smoking may be an additional critical focus for intervention. In addition, efforts should be made to increase adolescents' awareness of the addictive nature of cigarettes.     

Children and adolescents with brittle bones — psycho-social aspects

Summary Osteogenesis imperfecta (OI) or brittle bones is a most unusual disease and there is a limited number of people in the whole world suffering from it. Most studies reported from this area are in the medical field and few illuminate the psycho-social effects of the disease.
Three studies of children and young people with brittle bones have been carried out within the psycho-social field in Sweden. They are all based on inquiries and interviews with children and parents engaged in the Swedish National Organization for Physically Disabled Children and Adolescents.     

Children and adolescents who sell sex: a community study

Adolescents who reported to have given sexual favors for payment were investigated. The sample consisted of all adolescents in the public and private school systems in Oslo, the capital in Norway (age group 14-17, response rate 94.3%, N=10,828).Adolescents who had sold sex form 1.4%, three times as many boys as girls. Half the group had done it more than 10 times. Most were under the legal age of sex in Norway (16 years) when this first happened. We found no associations with sociodemographic variables or residential area in Oslo. However, sex sale was associated with low intercourse debut age, conduct problems, alcohol problems, use of drugs (including heroin) and violent victimization.The conclusion is that a small group in the general adolescent population sells sex, and many of the clients are assumed to be homosexual or bisexual men. Adolescents who take part in these activities are often heavily involved in delinquent behaviors and use of drugs, and many probably are in a risk zone for sexually transmitted diseases (including HIV), drug abuse and a delinquent and criminal development.