Background/Purpose: Healthcare transition is the “purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.” The American College of Physicians has partnered with national organizations, including the ACR, to develop guidelines and tools to promote a smooth transition to adult care. We aim to assess current transition practices and beliefs among North American pediatric rheumatology providers and to identify differences from a 2010 provider survey published by Chira et al. Methods: In April 2018, Childhood Arthritis and Rheumatology Research Alliance (CARRA) members received a 25-item online survey about healthcare transition. Got Transition’s Current Assessment of Health Care Transition Activities for Transitioning Youth to Adult Health Care Providers was used to measure clinical transition processes on a scale of 1 (basic) to 4 (comprehensive). Bivariate data analysis was used to compare 2010 and 2018 survey findings. Results: Over half of CARRA members completed the 2018 survey. Participants included pediatric rheumatologists (74%), adult- and pediatric-trained rheumatologists (4%), pediatric rheumatology fellows (18%), and other (4%), including emeritus faculty and mid-level providers. Most belonged to university-affiliated practices (87%) in the U.S. (91%). Providers aim to transfer patients at age 18 (23%) or 21 (33%), but the actual age of transfer is often 21 or older (56%). The most common target age to begin transition planning was 15-17 (49%). Few providers use the ACR transition tools (31%) or have a dedicated transition clinic (23%). Only 17% have a transition policy in place; 63% do not consistently address healthcare transition. Transition outcomes of interest included an adult rheumatology visit within 6 months of the last pediatric visit (80%), adherence to medications and plan of care (78%), continuous insurance coverage (78%), and patient-reported gaps in access to care (76%). When compared to the 2010 survey, improvement was noted in 3 of 12 transition barriers: availability of adult primary care providers, availability of adult rheumatologists, and transition knowledge and skills of pediatric staff (p<0.001). However, more providers cited the close bond among adolescents, parents and pediatric providers as a barrier (Figure 1). Conclusion: This survey of pediatric rheumatology providersdemonstrates some improvement in transition barriers since 2010, though most practices still maintain minimal support for patients and providers around healthcare transition. Further research is needed to understand how to effectively facilitate transition to adult care for young adults with childhood-onset rheumatic diseases.

The Swedish child health services (CHS) have a unique position in that they reach almost all children 0-6 years of age. The child health nurse has the main responsibility for developmental surveillance. Twelve scheduled visits with the nurse during the child’s first year of life make this an ideal setting to systematically identify infants with motor problems, ranging from asymmetric head positioning that may lead to plagiocephaly to more severe forms such as cerebral palsy (CP). However, the CHS lack evidence-based methods to assess motor development. The Structured Observation of Motor Performance in Infants (SOMP-I) assesses motor performance in two domains, i.e. level of motor development and quality of motor performance. SOMP-I is quick, non-invasive, requires minimal handling, and is suitable for a busy clinical setting when applied by physiotherapists. Given the importance of early detection, the increased likelihood of detecting motor problems when using evidence-based assessment methods and the key role of nurses within the CHS, the overall aim of this thesis was investigate the psychometric properties and clinical utility of SOMP-I when used by child health nurses. Furthermore, we aimed to establish the ability of SOMP-I to detect CP. Our results show that child health nurses can reliably assess the level of motor development in infants using SOMP-I. More variability was found when they assessed the infants’ quality of motor performance. Although the nurses expressed concern about introducing a more time-consuming assessment in an already tight schedule, they were able to integrate the SOMP-I assessment in routine care. The nurses reported that barriers to using SOMP-I were mostly logistic and practical in nature, and they pointed out the necessity of education and practice in order to become proficient assessors. Using SOMP-I appears to have supported the nurses in the decision-making process regarding motor performance in routine care. SOMP-I detected CP during the first months of life in neonatal intensive care recipients. To our knowledge, these studies are the first to evaluate child health nurses’ assessment of early motor performance using an evidence-based assessment method in routine care. The results are promising, but further research is warranted.

The present thesis reports on the experience of children and their carers who have been subject to interpersonal violence. Chapter one is a systematic literature review of qualitative research studies investigating the experiences of children and adolescents who have witnessed domestic violence in their families. Empirical evidence was critically evaluated from 11 studies in order to identify what the various research findings tell us about children and adolescents experiences from their own perspectives. Reviewing this body of literature revealed three themes: impact of domestic violence, coping with domestic violence and life after domestic violence. A number of additional sub-themes were found. Findings are discussed and consideration is given to future research directions as well as the clinical implications of the review findings. Chapter two is an empirical study exploring the lived experience of staff exposed to violence from Looked after Children (LAC) in residential care. This qualitative study used Interpretative Phenomenological Analysis methodology to analyse data from eight semi-structured interviews with residential staff. Three superordinate and eight subordinate themes emerged from the data analysis. Each theme is explored and consideration is given to the implications for future research and clinical practice. Chapter three presents a reflective paper of the researcher's personal experiences while conducting this research. It explores the challenges faced during the research process as well as the way in which the researcher's personal and professional development has been shaped for the future. Additionally, the role of Clinical Psychology in LAC services is discussed.

Background: Adolescence is a time of dynamic change during which puberty transition occurs, which is characterised as bringing profound psychological transformation to adolescents' identity, mental health and to impact on their overall behaviour. Literature has identified male adolescents to be less engaged in health promotion activities, and considered them a high risk population, particularly during puberty influencing their physical and psychological health outcomes, which may last longer. It is therefore essential that these young boys have good puberty experiences, as that will help to ensure better psychosocial adjustment in later life. However, socio-cultural factors play a significant role in Pakistan and other similar countries to create several barriers to puberty awareness and understanding of adolescent males, where only limited support is available for them in terms of enhancing their puberty experiences. It is because of these cultural factors that puberty and related topics have not been adequately researched in Pakistan, despite having enormous significance of puberty transition in male adolescents' life. Instead, studies that are more general have been conducted to assess the sexual and reproductive health (SRH) knowledge, attitudes and behaviours of adolescents of both sexes. In case where reproductive health (RH) needs of adolescent males are explored, puberty has only been a small part of it. It could be argued that understanding young males' puberty experience in predominantly patriarchal cultures such as Pakistan is particularly important in order to investigate and propose appropriate measures to provide good puberty experiences to adolescent males. As it may improve role-relationships in adult life, and reduces the cost of many preventable and chronic diseases, such as mental illnesses and sexually transmittable infections (STIs) as these adolescents make better choices regarding their SRH in the future. Aim: This study aimed to explore how young males aged 18-21 years from an urban city of Pakistan perceived their puberty experiences, by addressing the following objectives: 1. To explore the overall experiences of puberty from young males living in Pakistan. 2. To explore the barriers/challenges/difficulties Pakistani young males encountered during puberty, and how they may have overcome these. 3. To explore potential facilitating factors for Pakistani young males during adolescence that contributed to positive puberty experiences.   Method: An exploratory, generic qualitative study using an interpretive-social constructionist approach was conducted. The study included 22 participants from two study sites using convenient sampling, followed by snowball technique. Data was collected through individual semi-structured face-to-face and Skype interviews, each interview lasted between 60-240 minutes. Interviews were transcribed verbatim into their original languages (English and Urdu both) and data analysed thematically. NVivo10 and 11 software was used to manage the data. Ethical approval was received from the University of Nottingham, UK and official permissions were granted by the respective institutions approached, with written informed consent received from all the participants. Findings: The findings showed that the puberty phase was challenging for young males, and often resulted in negative psychological impacts, along with concerns related to their identity development. The negative effects mainly resulted from being unprepared and uninformed about pubertal changes, which was due to the socio-cultural factors, considering puberty a 'taboo' subject. As a result of which, there was a lack of awareness about puberty and difficulties in accessing trustworthy information. Consequently, participants during puberty felt confused, fearful, anxious and embarrassed of their experiences, which often resulted in isolation and depression. Alongside these experiences, participants were found to have adopted several coping strategies; nevertheless, they highlighted the need for additional material and health promotion programmes to aid the transition process. Participants also described the diverse puberty experiences challenged by the societal expectations and gender norms, as they sought power, acceptance and defined their sexual orientation whilst gaining social status and identity development. Their concerns about masculinity, sexual identity and developing an adult outlook along with stereotyped gender roles and responsibilities were shared which often resulted in personal tensions while negotiating through these societal expectations. Conclusion: This study is the first known study to explore the contextualised puberty experiences of young males in Pakistan. The study has established that young males' experienced and shared significant concerns regarding their puberty transition phase. These were related to information gathering, negative psychological impacts, coping strategies and identity formation in the patriarchal Pakistani context. The findings further demonstrated that currently the puberty transition does not necessarily provide positive experiences for the male adolescents, since the conjunction of personal and social worlds exposed participants to both negative and positive psychological impacts during their puberty and influenced their identity formation as an adult male. Findings from this study provide a new theoretical insight into the complex social and ecological factors at play in Pakistan during male adolescents' puberty transition, using social and ecological model (SEM) of human development. These findings can therefore be used to understand the gender appropriate educational needs of adolescent males around puberty and develop future health promotion programmes around male adolescents' puberty. Introducing and developing appropriate health promotion programmes around puberty could improve future male adolescents' experiences and may therefore impact positively on their long-term health and well-being, and assist them in developing a vibrant adult identity.

Background: The number of children with life-limiting conditions in England is increasing. Families and professionals caring for such children face difficult care and treatment decisions. However, little is known about the factors which influence such decision making and the processes through which decisions are made. Aim: To explore the process of decision making and future planning for children with life-limiting conditions. Methods: This study employed a longitudinal, qualitative case study approach, involving eleven cases. Cases were centred around a child and their family, and additional interview participants, including healthcare professionals and extended family members, were nominated by the family to participate in interviews. Data sources included 46 interviews, 72 observations and review of medical notes. Data were analysed using narrative analysis. Findings: Key findings pertained to the importance of relationships and communication, the nature of decision making and strategies used within the process, and the role of best interests’ discussions during disagreements. Good relationships and communication were essential in decision making, as the process often involved multiple stakeholders. Poor inter-professional communication however was common and presented challenges for decision making. Analysis demonstrated that individuals recognise little practical or emotional difference between decision making and future planning, suggesting that they conceptualise both, simply as decision making. Within the process of decision making, numerous strategies were identified which aimed to achieve agreement between stakeholders. These were information framing, persuasion, appeals to evidence and justification. During protracted disagreements, occasionally reference to the child’s ‘best interests’ was made and occurred when professionals were concerned about harm to the child. Consequently the possible limits to parental decisional involvement through application to the courts, was highlighted, yet never actually implemented. Predominantly collaboration, which was indicative of shared decision making, was observed and reported. Conclusion: This study revealed the complex and nuanced nature of decision making. This research has highlighted the necessity of good quality relationships between families and professionals, and also communication in the inter-professional relationship. For those involved in decision making for children with life-limiting conditions, an understanding of each individual’s holistic wishes and values, alongside their perception of decisional risks to the child are important considerations, particularly during sustained disagreements. This study suggests that despite the policy drive towards shared decision making and the widespread perception that parents are the ultimate decision makers for their children, these assumptions are bounded. It calls for a professional awareness of the moral work undertaken by families in decision making, in order to further promote collaboration and prevent sustained disagreement.

Introduction: This thesis seeks to explore the feasibility and effectiveness of using text messages (SMS) to improve psychological wellbeing amongst young people involved in the Youth Justice System. As this group are likely to be exposed to risk factors impacting on their psychological health, yet unlikely to access mainstream health services, the provision of alternative and accessible interventions for this group should be a key priority for service providers, commissioners and academics alike. Method: A systematic review of the literature and meta analyses to explore current findings in relation to the use of text message interventions to improve psychological wellbeing in the broader adolescent population is presented in Chapter Two. In total 2,496 studies were identified, ten of which met full inclusion criteria. No significant pooled differences were evident between intervention and control groups. Reported effects and the feasibility of the approach are discussed. Findings indicate that, to date, there is no available research in relation to the use of an SMS approach to promote wellbeing amongst young people in the YJS. In preparation for a feasibility study to explore this, the psychometric properties of the KIDSCREEN questionnaires are considered in Chapter Three. Here the reliability and the validity of the tool is evidenced indicating its appropriateness for the use in the proceeding empirical research. The rationale and development of an SMS intervention to encourage self-determination and improve psychological wellbeing, co-designed with service users, are discussed in Chapter Four. In Chapter Five, the findings of the mixed methods feasibility study are presented. Conclusion: No significant differences in wellbeing were found between participants’ pre and post KIDSCREEN scores. Significant findings indicate that the intervention may be more acceptable for those with poorer wellbeing and for those subject to diversionary intervention as VAS scores (assessing acceptability of the approach) correlated with lower KIDSCREEN scores (pre intervention) and type of intervention (diversionary or statutory) respectively. Five themes emerged from the semi- structured interviews highlighting important factors to consider when designing or implementing an intervention of this nature for this hard to reach population. A synthesis of the findings is presented in the concluding chapter where recommendations for future enquiry are considered.

Art is assumed to possess therapeutic benefits of healing for children, as part of patient-focused design in healthcare. Research on adult patients suggests that by infusing art into the healthcare setting, the design may reduce stress that could impede the healing process. Since the psychological and physiological well-being of children in healthcare settings is extremely important in contributing to the healing process, it is vitally important to identify what type of art supports stress reduction. Nature art was anticipated to be the most preferred and have stress-reducing effects on pediatric patients. The objective of this study was to investigate what type of art children prefer, and what type of art has potentially stress-reducing effects on pediatric patients. This study used a three-phase, multimethod approach: a focus group study, a randomized study, and a quasi-experimental study design. Findings from three phases were evaluated. The objective of Phase 1 was to discern what type of art school children prefer, Phase 2 focused on what type of art hospitalized children prefer and to compare these preferences identified in Phase 1. Phase 3 was a quasi-experimental study to determine if nature art has a potentially healing effect on pediatric patients when compared to abstract art or no art at all. The findings of this study demonstrate that nature art is the preferred type of art by children from age 5 to 17. But there were no significant differences among the three art intervention groups of pediatric patients. These findings led to design recommendations regarding what art should be placed in children'€™s hospital rooms in order to create a stress-reducing, healing environment.

Art is assumed to possess therapeutic benefits of healing for children, as part of patient-focused design in healthcare. Research on adult patients suggests that by infusing art into the healthcare setting, the design may reduce stress that could impede the healing process. Since the psychological and physiological well-being of children in healthcare settings is extremely important in contributing to the healing process, it is vitally important to identify what type of art supports stress reduction. Nature art was anticipated to be the most preferred and have stress-reducing effects on pediatric patients. The objective of this study was to investigate what type of art children prefer, and what type of art has potentially stress-reducing effects on pediatric patients. This study used a three-phase, multimethod approach: a focus group study, a randomized study, and a quasi-experimental study design. Findings from three phases were evaluated. The objective of Phase 1 was to discern what type of art school children prefer, Phase 2 focused on what type of art hospitalized children prefer and to compare these preferences identified in Phase 1. Phase 3 was a quasi-experimental study to determine if nature art has a potentially healing effect on pediatric patients when compared to abstract art or no art at all. The findings of this study demonstrate that nature art is the preferred type of art by children from age 5 to 17. But there were no significant differences among the three art intervention groups of pediatric patients. These findings led to design recommendations regarding what art should be placed in children'€™s hospital rooms in order to create a stress-reducing, healing environment.

Inaug.-Diss.--Universität Erlangen-Nürnberg, Erlangen. / Vita.

Background: Despite having limited access to specialist palliative care, countries can successfully satisfy palliative care needs by ensuring all health professionals are properly trained and educated in their respective roles. Effective communication is a fundamental element in ensuring the quality of care provided to children with palliative care needs and has a considerable effect on the well-being of children as well as their relatives and care professionals. Nonetheless, a broad overview of the existing literature reveals that nurses often feel inadequately trained or prepared in terms of the communication skills needed to deal with the difficult situations. They often lack the confidence to communicate properly with parents or to deal with difficult questions or issues of conflict. Whilst this seems to echo studies previously conducted across a range of countries worldwide, research shows that countries with an Arab culture face slightly different issues in terms of disclosing serious prognoses to families. The current study is the first to examine communication between children, parents, and health professionals, in the care of children with non-malignant life-threatening and life-limiting illnesses in Jordan, and in particular the cultural and spiritual context that affects this communication. Purpose: The purpose of the current study is to explore the experience of communication in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan. Methods: this study employed a collective qualitative case study approach. It was conducted in three paediatric units in a Jordanian hospital. Each case comprised a child aged 1-12 years, their most involved family carer (mothers), physician(s) and nurse(s). Two data collection methods were employed: participant observation and semi-structured interviews with three categories of participants: mothers, physicians, and the nurses who cared for the children that participated in this study. Findings: the study was based on 15 cases, with a total of 197 observational hours and 60 interviews (conducted with 15 mothers, 12 physicians and 21 nurses). The findings indicate that a protective approach was taken by the study participants as they communicated together regarding their children’s care. The children attempted to shelter their parents from distress by not disclosing any anxiety or fear they were experiencing and parents similarly protected their children by not providing them with the all the details of their condition. In addition, parents avoided any situations where illness might be mentioned. Professional boundaries were adhered to by nurses as they cared for children and their families to avoid becoming emotionally involved. The nurses concentrated on routine care tasks as opposed to providing emotional support to children in order to avoid the significant emotional distress associated with the inevitable passing of the child. Doctors behaved similarly and avoided discussing death or other bad news with children to protect the well-being of children and families as well their own. Conclusion: These findings have implications. In the first instance, investigating the reasoning behind parents’ decisions to talk (or not) to their children about the details of their illnesses is a substantial issue. The findings of the current study indicate that while open and honest communication between parents and children is crucial, not all mothers agree with open communication about death with their children. Therefore, any future intervention planned for them should respect their autonomy and decisions. However, the role of health professionals could be significant, especially increasing the parents’ awareness of their children’s protective approach and its consequences on their mental and psychological health could be one of the most important interventions to improve mutual communication between parents and children.