Managing Transition from Curative to Palliative: GP and Bereaved Parent Experiences

Background Children with cancer in the UK are treated in regional childhood cancer centres (RCCC). Families and health care professionals can develop close working relationships over the often-long duration of treatment. Cancer still accounts for largest numbers of childhood disease related deaths and as home is commonly the choice of location for palliative and end of life care, the child and family can face transitions both from curative to palliative care and from hospital to home. This paper reports on findings relating to these transitions from the perspectives of parents and family doctors highlighting implications for both hospital and community based health care practitioners. Aims To explore the experiences of bereaved parents and family doctors following the death of a child with cancer in the family home. Methods Ethical approval was sought and obtained. In this qualitative study one-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents. The parents were those whose child had received treatment for cancer at a RCCC in the UK and who died at home, the GPs were those involved in the palliative care. Chronological comparative data analysis using grounded theory was completed. Results Cessation of contact with the RCCC when the child receives palliative care at home can be traumatic for parents. Hospital and community based health care professionals need to carefully consider how they establish, maintain and end working relationships with the child and family. Conclusions Findings from this study provide a new perspective to the effective management of transition in paediatric oncology palliative care; managing working relationships. Findings highlight the need for hospital and community based staff to identify and employ strategies that ensure working relationships with families are effectively managed prior to, during and following the child’s transition from curative to palliative care.

An Investigation into the Implementation of CYP-IAPT Routine Outcome Measures in their First Year of Integration into Child Psychotherapy Practice

This thesis examines the impact on child and adolescent psychotherapists within CAMHS of the introduction of routine outcome measures (ROMs) associated with the Children and Young People’s Improving access to Psychological Therapies programme (CYP-IAPT). All CAMHS therapists working within a particular NHS mental health Trust1 were required to trial CYP-IAPT ROMs as part of their everyday clinical practice from October 2013-September 2014. During this period considerable freedom was allowed as to which of the measures each therapist used and at what frequency. In order to assess the impact of CYP-IAPT ROMs on child psychotherapy, I conducted semi-structured interviews with eight psychotherapists within a particular CAMHS partnership within one NHS Trust. Each statement was coded and grouped according to whether it related to initial (generic) assessment, goal setting / monitoring, monitoring on-going progress, therapeutic alliance, or to issues concerning how data might be used or interpreted by managers and commissioners. Analysis of interviews revealed greatest concern about session-by session ROMs, as these are felt to impact most significantly on psychotherapy; therapists felt that session-by-session ROMs do not take account of negative transference relationships, they are overly repetitive and used to reward / punish the therapist. Measures used at assessment and review were viewed as most compatible with psychotherapy, although often experienced as excessively time consuming. The Goal Based Outcome Measure was generally experienced as compatible with psychotherapy so long as goals are formed collaboratively between therapist and young person. There was considerable anxiety about how data may be (mis)used and (mis)interpreted by managers and commissioners, for example to end treatment prematurely, trigger change of therapist in the face of negative ROMs data, or to damage psychotherapy. Use of ROMs for short term and generic work was experienced as less intrusive and contentious.

A qualitative study of the emotional coping and support needs of children living with a parent with a brain injury

Primary objective: To examine emotional coping and support needs in children of persons with acquired brain injury, with a view to understanding what interventions would be helpful for these children. Design: The study was qualitative, using a thematic analysis approach. Methods and procedure: Six children between 9 and 18 years of age, six parents (three with ABI), and three support workers were interviewed either at home or at a support centre, using a semi-structured interview guide. Results: Children reported using a variety of adaptive and maladaptive emotional coping strategies, but were consistent in expressing a need for credible validation, i.e. sharing experiences with peers. The results are presented under four overarching themes: difficulties faced; emotions experienced; coping strategies; and reported support needs. Conclusions: The results reveal an interaction between the child’s experiences of complex loss that is difficult to acknowledge, emotional distancing between parent and child, and the children’s need for credible validation. All children expressed a desire for talking to peers in a similar situation to themselves, but had not had this opportunity. Interventions should set up such peer interaction to create credible validation for the specific distress suffered by this population.

Narrative Matters: ‘The third space’ in Adolescent and Young Adult Fiction

In his article ‘Narrative Matters’, Gordon Bates (Bates, 2016) discusses the relevance of the humanities, and in particular that of fiction, in helping us to understand the experiences and problems of adolescents suffering men- tal health problems. Notably, the number of novels pub- lished for children and adolescents that focus on mental health problems has risen considerably since the begin- ning of this century. The ‘Goodreads’ (Goodreads, 2016) website lists more than 1000 fiction titles on matters pertaining to mental illness published for the UK and US markets since 2000.

Sexuality in the media and emotional well-being among lesbian, gay, & bisexual adolescents

LGB teens’ feelings, desires, and physical attractions run contrary to the heteronormative standards of American society. As such, LGB youth often experience feelings of sadness and dejection that can lead to depression and suicidal tendencies (Russell & Joyner, 2001). Evaluating the factors that could possibly influence the emotional well-being of LGB youth would be an important undertaking given the hindrances LGB adolescents face during sexual socialization. The purpose of this dissertation was to study the portrayal of sexuality in media popular with LGB adolescents and to assess the relationship between media exposure and emotional well-being among LGB teens. In particular, this dissertation distinguished between mainstream media and gay- and lesbian-oriented (GLO) media. GLO media were defined as any media outlet specifically designed, produced, and marketed for gay and lesbian audiences. Two studies were conducted to serve as the initial investigation in a program of research that will be designed to better understand the role of media in the lives of LGB individuals. The first study of this dissertation was a content analysis of the television programs, films, songs, and magazines most popular with LGB teens as determined by self-reports of media consumption in a survey of media use. A total of 96 media vehicles composed the content analysis sample, including 48 television programs, 22 films, 25 musical artists, and 6 magazines. Using a coding scheme that was adapted from previous media sex research, Study 1 measured the frequency of sexual instances as well as the type, nature, and source characteristics for each sexual instance. Results of the content analysis suggest that heterosexuality reigns supreme in mainstream media. When LGB sexuality is depicted in mainstream media, it is often sanitized. LGB sexual talk is rarely sexual; rather it is primarily about the social or cultural components of being lesbian, gay, or bisexual. LGB sexual behavior is also rare in mainstream media, which tend to depict LGB individuals as non-sexually as possible. LGB sexuality in mainstream media exists, but is more about proclaiming LGB identity than actually living it. GLO media depicted LGB sexuality more frequently than mainstream media did. GLO media often depict LGB sexuality in a more realistic manner. LGB sexual talk is about LGB identity, as well as the relational and sexual aspects of being a sexual minority. LGB sexual behavior is commonplace in GLO media, depicting LGB individuals as sexual beings. LGB sexuality in GLO media is prevalent and relatively authentic. The second study was a survey that assessed the relationship between media exposure (both mainstream media and GLO media) and LGB teens’ emotional well-being, considering self-discrepancy as an important mediating variable in that relationship. Study 2 also considered age, sex, and sexual identity commitment as possible moderating variables in the relationship between media exposure and emotional well-being. In Study 2, emotional well-being was defined as lower levels of dejection-related emotions. LGB adolescents (N = 573) completed a questionnaire that was used to investigate the relationships between media exposure and emotional well-being. Results of the survey indicated that mainstream media exposure was not significantly associated with dejection-related emotions. In contrast, GLO media exposure was negatively related to feelings of dejection even when controlling for age, sex, race, perceived social support, school climate, religiosity, geographical location, sexuality of peers, and motivation for viewing LGB inclusive media content. Neither age nor sex moderated the relationships between media exposure variables and dejection, but sexual identity commitment did act as a moderator in the relationship between GLO media exposure and dejection. The negative relationship between GLO media exposure and dejection was stronger for participants lower in sexual identity commitment than for participants higher in sexual identity commitment. In addition, the magnitude of discrepancies between the actual self and the ideal self mediated the relationship between GLO media exposure and dejection for LGB adolescents low in sexual identity commitment. However, self-discrepancy did not mediate the relationship between GLO media exposure and dejection for LGB teens highly committed to their sexual identities. Results of both the content analysis and the survey are discussed in terms of implications for theory and method. Practical implications of this dissertation’s findings are also discussed, as well as directions for future research.

Experiences of care and adjustment to change in caregivers of children with autoimmune encephalitis: an interpretative phenomenological analysis

Background: Autoimmune encephalitis (AE) occurs in response to an antibody-mediated central nervous system disease and can lead to significant neurodisability. Prior research on family adjustment has described a reciprocal relationship between caregiver functioning, distress and clinical outcome in parents and children with encephalitis. There has been no previous research exploring the experiences of caregivers with a child with AE. Aims: To explore the perspectives of parents and/or caregivers with a child diagnosed with AE regarding (i) their own adjustment from hospital admission to post-discharge, and (ii) their experiences of care and service provision. Methods: A purposive sampling approach was used. Five parents of children with AE participated in a semi-structured interview exploring their experiences of caring for their child and service provision during acute care and post-discharge. Interpretative Phenomenological Analysis (IPA) was used to analyse the transcripts. Main findings and conclusions: Four shared super-ordinate themes with related subthemes emerged: (a) uncertainty, (b) managing our recovery, (c) changes in my child, (d) experiences of service provision. Participants reported emotional distress, often underpinned by recurrent experiences of uncertainty, and ‘loss’ of the previous child, and mediated by coping strategies and social support. While an overall positive experience of inpatient services was reported, parents often perceived post-discharge services as lacking in co-ordination, communication and formal follow-up, resulting in unmet support needs. Implications and recommendations for services, practitioners and future research are discussed.

Language Outcomes of the Play and Language for Autistic Youngsters (PLAY) Project Home Consultation model—An Extended Analysis

The current study is a post-hoc analysis of data from the original randomized control trial of the Play and Language for Autistic Youngsters (PLAY) Home Consultation program, a parent-mediated, DIR/Floortime based early intervention program for children with ASD (Solomon, Van Egeren, Mahone, Huber, & Zimmerman, 2014). We examined 22 children from the original RCT who received the PLAY program. Children were split into two groups (high and lower functioning) based on the ADOS module administered prior to intervention. Fifteen-minute parent-child video sessions were coded through the use of CHILDES transcription software. Child and maternal language, communicative behaviors, and communicative functions were assessed in the natural language samples both pre- and post-intervention. Results demonstrated significant improvements in both child and maternal behaviors following intervention. There was a significant increase in child verbal and non-verbal initiations and verbal responses in whole group analysis. Total number of utterances, word production, and grammatical complexity all significantly improved when viewed across the whole group of participants; however, lexical growth did not reach significance. Changes in child communicative function were especially noteworthy, and demonstrated a significant increase in social interaction and a significant decrease in non-interactive behaviors. Further, mothers demonstrated an increase in responsiveness to the child’s conversational bids, increased ability to follow the child’s lead, and a decrease in directiveness. When separated for analyses within groups, trends emerged for child and maternal variables, suggesting greater gains in use of communicative function in both high and low groups over changes in linguistic structure. Additional analysis also revealed a significant inverse relationship between maternal responsiveness and child non-interactive behaviors; as mothers became more responsive, children’s non-engagement was decreased. Such changes further suggest that changes in learned skills following PLAY parent training may result in improvements in child social interaction and language abilities.

First-episode psychosis in a 15 year-old female with clinical presentation of anti-NMDA receptor encephalitis: a case report and review of the literature

BACKGROUND: Anti-NMDA receptor encephalitis is an autoimmune disease that was identified in 2007, and manifests in a stepwise manner with psychiatric, neurological and autonomic symptoms. The disease is caused by autoantibodies against NMDA receptors. It can have a paraneoplastic origin, mainly secondary to ovarian teratomas, but it can also be unrelated to the tumor. This disease can affect both sexes and all ages. CASE PRESENTATION: Here, we present a case of a 15 year-old female adolescent with first-episode psychosis with anti-NMDA receptor encephalitis not related to tumor, which manifested with delusion, hallucinations, panic attacks, agitation, and neurological symptoms, and later with autonomic instability. She was treated with immunotherapy and psychiatric medication resulting in improvement of her main psychiatric and neurological symptoms. CONCLUSION: Our main objective in presenting this case is to alert clinicians to this challenging and recent disease that has a clinical presentation that might resemble a functional psychiatric condition and can be underdiagnosed in the context of child and adolescent psychiatry

Risk Factors for Neonatal Sepsis and Method for Reduction of Blood Culture Contamination

Background False-positive blood cultures findings may lead to a falsely increased morbidity and increased hospital costs. Method The survey was conducted as retrospective - prospective study and included 239 preterm infants (born before 37 weeks of gestation) who were treated in Neonatal Intensive Care Unit (NICU) in Institute for Child and Youth Health Care of Vojvodina during one year (January 1st, 2012 to December 31st, 2012). The retrospective part of the study focused on examination of incidence of neonatal sepsis and determination of risk factors. In the prospective part of the study infants were sub-divided into two groups: Group 1- infants hospitalized in NICU during the first 6 months of the study; blood cultures were taken by the ‘’clean technique’’ and checklists for this procedure were not taken. Group 2- neonates hospitalized in NICU during last 6 months of the study; blood cultures were taken by ‘’sterile technique’’ and checklists for this procedure were taken. Results The main risk factors for sepsis were prelabor rupture of membranes, low gestational age, low birth weight, mechanical ventilation, umbilical venous catheter placement, and abdominal drainage. Staphylococcus aureus and coagulase negative Staphylococcus were the most frequently isolated microorganisms in false-positive blood samples. Conclusions Education of employees, use of checklists and sterile sets for blood sampling, permanent control of false positive blood cultures, as well as regular and routine monthly reports are crucial for successful reduction of contamination rates.

Parental feelings face to hospitalization of the child

The hospitalizatíon of a child carnes with it major changes, etther in the child's life or parent. lllness and hospttalizatíon constitute a crisis situation for both the child and the famHy as it incorporates financiai, psychotogical, relational and social changes. The purpose of this work and analyze the satísfactíon and parents' perception on the importance of nursing care during hospttalizatíon and feelings experienced by parents. Objectives: To know the opinions and feelings of the parents in relation to the admlsston of the child 1n the service of Pediatrics at North of Portugal. Methods: Integrated this study parents of chtldren hospttalized in the pediatric inpatíent at the Hospital Trás-os-Montes e alto Douro, Vila Real, whose children were in the service to at least more than 48 hours, In total 33 escorts that replied to the questionnaire. For such a study we chose the type quantitative deschptíve. We proceeded to collect data by conductíng a questíonnaire, and the results of it were drafted in the SPSS program through Quantitatíve model wtth exploratory qualitatíve approach. Results: The age ofthe partícipants is between the 21 and 46 years - old, 75. 8% of respondents were married, 78. 8% of chtldren was hospitalized in the first time. We conclude that the mother is who else accompanies the chtld in the hospital. We had positive feedback regarding the interactíon parent-nurses since many parents stressed the good relatíonship with the nursing team (It reported that "Nurses" and "Nurses and "auxiliaries" were who else helped them, with 30. 3% and 21. 2% respectively). The feelings more mentioned were: anxiety -21 answers, sadness-20, fear-15 and hope with 15. The conditions offered to the parents were considered goodfor60.6%.

Distinguishing predisposing factors for enamel hypoplasia and molar-incisor hypomineralization in children in Ile-Ife, Nigeria

Aim: To determine if the prevalence of enamel hypoplasia, molar-incisor hypomineralisation (MIH) and deciduous molar hypomineralisation (DMH) is associated with the socioeconomic status of the child and to determine the prevalence of enamel hypoplasia and MIH/DMH comorbidity in the study population. Methods: Information was collected on the sex and socioeconomic status of the 1,169 study participants’ resident in Ile-Ife, Nigeria, recruited through a household survey. The children were clinically examined to assess for the presence of enamel hypoplasia, MIH and DMH. Associations between sex, socioeconomic status and the prevalence of enamel hypoplasia, MIH and DMH were determined. The proportion of children with enamel hypoplasia and MIH/DMH co-morbidity was also determined. Results: Among the 1,169 study participants, 47(4.0%) had MIH, 15 (1.3%) had DMH and 161 (13.8%) had enamel hypoplasia. One (0.09%) study participant had MIH/DMH co-morbidity, 12 (1.0%) had DMH/enamel hypoplasia co-morbidity, and 9 (0.8%) had MIH/hypoplasia co-morbidity. There was no significant association between the socioeconomic status and presence of enamel hypoplasia (p=0.22), MIH (p=0.78) or DMH (p=1.00). Conclusions: The socioeconomic status cannot be used as a distinguishing factor for enamel hypoplasia, MIH and DMH. The possibility of co-existence of enamel hypoplasia and MIH/DMH makes it imperative to find ways to distinguish between the lesions.

The Impact of Friends on Newly Immigrant Children’s Emotional and Behavioral Adjustment

Immigration disrupts an individual’s support network; however, the stresses of the immigration process increase the need for social support. The presence of social support becomes essential for immigrant children and adolescents to cope with these important transitional circumstances. Friends are both sources of social support and models for behavior. Furthermore, friendship networks are known to have a significant influence on youths’ functioning. Literature suggests that peer relations become more important in adolescence and friend support is related to child and adolescent well-being. Thus, friend relationships may be particularly important for immigrant youths who experience disruption in their friendship networks during the process of migration to another country. In addition to friendship networks and support, friend characteristics also need to be taken into consideration as important factors for immigrant youth adjustment. My study involved analyses of the effects of friend support and friend problem behaviors on emotional and behavioral functioning for elementary, middle, and high school age newly immigrant children and adolescents. Immigrant children and adolescents (N = 503) were interviewed at schools by interviewers fluent in participants’ languages. Structural Equation Modeling (SEM) analyses revealed that friend support and friend problem behaviors were related to children’s self-esteem and externalizing behaviors. In addition, friend problem behavior alone predicted children’s psychological symptoms and depression scores. Furthermore, age/grade was found to be a moderator for the relation between friend problem behavior and immigrant youth behavioral adjustment such that compared to elementary and high school cohorts, middle school youths showed more externalizing behaviors when they had friends performing problem behaviors. Results supported the idea that both friend support and friend behavior are related to newly immigrant youths’ emotional and behavioral adjustment. This study informs further research and interventions concerning the development of programs to facilitate immigrant youths’ adjustment by revealing friendship factors related to their adaptation.

Parental unemployment and youth life satisfaction: The moderating roles of satisfaction with family life

Abstract While Europe is slowly recovering from the economic recession, its effects on labour markets are still visible. The number of jobless families has increased and previous research has shown that unemployment can affect the wellbeing of both parents and their children. In this study we explored the links between parental unemployment and youth life satisfaction by considering the potential moderating roles played by satisfaction with family life and perceived family wealth. We used descriptive statistics, correlations, simple moderation and moderated moderation models of regression on data from a representative sample of 3937 Portuguese students (Mage = 13.9 years; SD ± 1.7; 48 % boys). Results showed that the negative effects of parental unemployment on youth life satisfaction were moderated by youth perceived satisfaction with family life but not by perceived wealth. This suggested that during family unemployment, young people satisfied with their family life are less vulnerable to the negative effects of parental unemployment on their life satisfaction. The relationship between parental unemployment and youth well-being requires further research, especially during periods of labour market crisis.

Literary reading is a team game: exercices with Carroll and Carle.

This paper will focus on the issue of training future literary reading mediators or promoters. It will propose a practical exercise on playing with intertextuality with the aid of two children literature classics and masterpieces—The Adventures of Alice in Wonderland by Lewis Carroll (1865) and The Very Hungry Caterpillar by Eric Carle (1969). This exercise is not designed to be a pedagogical or didactic tool used with children (that could alternatively be done with the same corpora), but it is designed to focus on issues of literary studies and contemporary culture. The aim of this practical exercise with future reading promoters is to enable graduate students or trainees to be able to recognize that literary reading can be a team game. However, before arriving at the agan stage, where the rules get simplified and attainable by young readers, hard and solitary work of the mediator is required. The rules of this solitary game of preparing the reading of classical texts are not always evident. On the other hand, the reason why literary reading could be (and perhaps should be) defined as a new team game in our contemporary and globalized world derives directly from the fact that we now live in a world where mass culture is definitely installed. We should be pragmatic on evaluating the conditions of communication between people (not only young adults or children) and we should look the way people read the signs on everyday life and consequently behave in contemporary society, and then apply the same rules or procedures to introduce old players such as the classical books in the game. We are talking about adult mediators and native digital readers. In the contemporary democratic social context, cultural producers and consumers are two very important elements (as the book itself) of the literary polissystem. So, teaching literature is more than ever to be aware that the literary reader meaning of a text does not reside only in the text and in its solitary relationship with the quiet and comfortably installed reader. Meaning is produced by the reader in relation both to the text in question and to the complex network of texts invoked in the reading process and plural connections provided by the world of a new media environment.

A comunicação corporal na pre-escola : caminhos e descaminhos

Universidade Estadual de Campinas . Faculdade de Educação Física