The Barretstown experience

The thesis was prompted by a simple clinical observation. Seriously ill children returning from Barretstown Holiday Camp appeared changed. Barretstown ‘magic’ confuses the issue but indicates real and clinically evident transformations. The project sought to understand the experience and place it in a recognisable framework. The data was collected by interviews, observations as camp Paediatrician, memberships of the Child Advisory Committee and the Association’s criteria assessment team, participation in volunteer training and visits to international camps. The research presents evidence that the concepts of rite of passage, graceful mimesis and salutogenesis clarify operative social processes. The passage stages of separation, transition and reaggregation can be identified. Passage rites reorder personal and social upsets to fresh arrangements that facilitate change. Interviews confirm the reordering impact of achievements in play activities. These are challenging experiences closely guided by their Masters of Ceremonies – the Caras. The Cara/camper relationship is crucial and compatible with Girard’s theory of external mimesis. Visits to four camps confirm an inspirational process in contrast to a reported camp with a predetermined formative influence. Charismatic Caras/Councillors inspire playful mimesis and salutogenic transformations. Health is more than correction of pathogenic deficits and restoration of homeostasis. Salutogenic health promotes heterostasis – a desire for optimal experiences underpinned by a sense of coherence and adequate resources. Some evidence is presented that children have an improved sense of coherence after camp, which enables them to cope better with the demands of ill health. The camps enable sick children to up regulate risk taking towards more heterostatic experiences rather than down regulate their expectations. The heterostatic impulse can explain the disability paradox of good quality of life in the presence of severe disability. The salutogenic power of Barretstown can trump the pathogenic effects of childhood cancer and other serious illnesses.

Time use, daily activities, and health-related quality of life of school-going late adolescents in Cork city and county: A cross-sectional study

Aim: This thesis examines a question posed by founding occupational scientist Dr. Elizabeth Yerxa (1993) – “what is the relationship between human engagement in a daily round of activity (such as work, play, rest and sleep) and the quality of life people experience including their healthfulness” (p. 3). Specifically, I consider Yerxa’s question in relation to the quotidian activities and health-related quality of life (HRQoL) of late adolescents (aged 15 - 19 years) in Ireland. This research enquiry was informed by an occupational perspective of health and by population health, ecological, and positive youth development perspectives. Methods: This thesis is comprised of five studies. Two scoping literature reviews informed the direction of three empirical studies. In the latter, cross-sectional time use and HRQoL data were collected from a representative sample of 731 school-going late adolescents (response rate 52%) across 28 schools across Cork city and county (response rate 76%). In addition to socio-demographic data, time use data were collected using a standard time diary instrument while a nationally and internationally validated instrument, the KIDSCREEN-52, was used to measure HRQoL. Variable-centred and person-centred analyses were used. Results: The scoping reviews identified the lack of research on well populations or an adolescent age range within occupational therapy and occupational science; limited research testing the popular assumption that time use is related to overall well-being and quality of life; and the absence of studies that examined adolescent 24-hour time use and quality of life. Established international trends were mirrored in the findings of the examination of weekday and weekend time use. Aggregate-level, variable-centred analyses yielded some significant associations between HRQoL and individual activities, independent of school year, school location, family context, social class, nationality or diary day. The person-centred analysis of overall time use identified three male profiles (productive, high leisure and all-rounder) and two female profiles (higher study/lower leisure and moderate study/higher leisure). There was tentative support for the association between higher HRQoL and more balanced time use profiles. Conclusion: The findings of this thesis highlight the gendered nature of adolescent time use and HRQoL. Participation in daily activities, singly and in combination, appears to be associated with HRQoL. However, the nature of this relationship is complex. Individually and collectively, adolescents need to be educated and supported to create health through their everyday patterns of doing.

Cancer associated malnutrition: prevalence of cachexia, sarcopenia and impact on treatment outcomes, survival and health related quality of life

Malnutrition, sarcopenia and cancer cachexia (CC) are prevalent among cancer patients and can have detrimental effects on clinical outcomes such as quality of life (QoL) and overall survival. Cachexia is associated with lower tolerance for chemotherapy, which limits the total dose that can be delivered, the number of symptomatic responses and any survival advantage that might be accrued. Moreover, for the majority who do not respond, cachexia may be exacerbated by systemic chemotherapy, thus increasing the net symptom burden experienced by patients. The multitude of interactions between cancer location, treatments, nutritional status and QoL has never been thoroughly explored in an Irish cancer cohort. The objectives of this thesis were to further understand nutritional status, especially body composition in ambulatory cancer patients and determine the relationship between nutritional status using different assessment criteria and QoL, chemotherapy toxicity and survival among cancer patients undergoing chemotherapy. Results aimed to identify baseline factors that may be predictive of poor outcome, toxicities to chemotherapy and disease-free and overall survival. This thesis broadly divides into two sections. The first section (Chapters 3 & 4) focuses on improving our knowledge of the nutritional status of Irish cancer outpatients using a cross sectional study design. A study of 517 patients referred for chemotherapy was conducted using computed tomography (CT) imaging (body composition) and a survey that documented oncologic data, weight loss (WL) data and QoL data. We revealed that a significant proportion of Irish cancer patients undergoing chemotherapy experience unintentional WL over the previous 6 months (62%), sarcopenia (45%) and CC (43%), and the distribution of WL and nutritional risk were associated with site of primary tumour and treatment intent. Patients that had sarcopenia, nutritional risk, or CC had significantly reduced functional abilities, more symptoms and adverse global QoL. In the second section of this thesis (Chapters 5 & 6) the potential link between developing toxicity to antineoplastic regimens in patients with sarcopenia was conducted by way of retrospective studies. A retrospective serial CT analysis defined the prevalence of sarcopenia in patients with metastatic renal cell carcinoma (mRCC) and metastatic castrate resistant prostate cancer (mCRPC), which was then correlated with dose limiting toxicities of sunitinib and docetaxel respectively. Sarcopenia was prevalent in patients with mRCC and mCRPC, was an occult condition in patients with normal/high BMI, was associated with less treatment days, was a significant predictor of DLT in patients receiving sunitinib and a significant predictor of neutropenia and neurosensory toxicities in patients receiving docetaxel. This thesis attempted to address the underlying research deficiencies in Irish oncology nutritional data at national level. The findings from this thesis have implications for the planning of cancer care interventions and indicate that further research is required to improve nutritional screening, in particular for CC and sarcopenia, in the hope that timely intervention can improve both patient-centered and oncologic outcomes.

The impact of shame on health-related quality of life among HIV-positive adults with a history of childhood sexual abuse.

Childhood sexual abuse is prevalent among people living with HIV, and the experience of shame is a common consequence of childhood sexual abuse and HIV infection. This study examined the role of shame in health-related quality of life among HIV-positive adults who have experienced childhood sexual abuse. Data from 247 HIV-infected adults with a history of childhood sexual abuse were analyzed. Hierarchical linear regression was conducted to assess the impact of shame regarding both sexual abuse and HIV infection, while controlling for demographic, clinical, and psychosocial factors. In bivariate analyses, shame regarding sexual abuse and HIV infection were each negatively associated with health-related quality of life and its components (physical well-being, function and global well-being, emotional and social well-being, and cognitive functioning). After controlling for demographic, clinical, and psychosocial factors, HIV-related, but not sexual abuse-related, shame remained a significant predictor of reduced health-related quality of life, explaining up to 10% of the variance in multivariable models for overall health-related quality of life, emotional, function and global, and social well-being and cognitive functioning over and above that of other variables entered into the model. Additionally, HIV symptoms, perceived stress, and perceived availability of social support were associated with health-related quality of life in multivariable models. Shame is an important and modifiable predictor of health-related quality of life in HIV-positive populations, and medical and mental health providers serving HIV-infected populations should be aware of the importance of shame and its impact on the well-being of their patients.

Young caregivers in the end-of-life setting: a population-based profile of an emerging group.

PURPOSE: Little is known about young caregivers of people with advanced life-limiting illness. Better understanding of the needs and characteristics of these young caregivers can inform development of palliative care and other support services. METHODS: A population-based analysis of caregivers was performed from piloted questions included in the 2001-2007 face-to-face annual health surveys of 23,706 South Australians on the death of a loved one, caregiving provided, and characteristics of the deceased individual and caregiver. The survey was representative of the population by age, gender, and region of residence. FINDINGS: Most active care was provided by older, close family members, but large numbers of young people (ages 15-29) also provided assistance to individuals with advanced life-limiting illness. They comprised 14.4% of those undertaking "hands-on" care on a daily or intermittent basis, whom we grouped together as active caregivers. Almost as many young males as females participate in active caregiving (men represent 46%); most provide care while being employed, including 38% who work full-time. Over half of those engaged in hands-on care indicated the experience to be worse or much worse than expected, with young people more frequently reporting dissatisfaction thereof. Young caregivers also exhibited an increased perception of the need for assistance with grief. CONCLUSION: Young people can be integral to end-of-life care, and represent a significant cohort of active caregivers with unique needs and experiences. They may have a more negative experience as caregivers, and increased needs for grief counseling services compared to other age cohorts of caregivers.

Ritualizing Barong and Rangda: Repercussions of a Collaborative Field Experience in Kerambitan, Bali.

The dance-drama called Barong and Rangda a ritual, is one of the vital events that breathes life in the small village, Banjar Tista, and extends beyond the boundaries of its "performance" area. In this thesis, I depend on Ronald Grimes' concept of "ritualizing" as a continuum in the context of my fieldwork in Bali, Indonesia. The ritual cycle and the collaborative fieldwork process are analyzed through the impressions of each fieldworker. Barong and Rangda is a well-documented dance-drama and part of the longer Calonarang story. This dance-drama is a mythological battle between the lion, Barong, and the witch, Rangda, and is performed authentically to create spiritual balance and cleanse its community members of evil. This ritual performance reaches beyond the time and place in which the performance originates and creates a ripple affect on the village members, those in trance, musicians and cultural outsiders alike.

A neural biomarker of psychological vulnerability to future life stress.

We all experience a host of common life stressors such as the death of a family member, medical illness, and financial uncertainty. While most of us are resilient to such stressors, continuing to function normally, for a subset of individuals, experiencing these stressors increases the likelihood of developing treatment-resistant, chronic psychological problems, including depression and anxiety. It is thus paramount to identify predictive markers of risk, particularly those reflecting fundamental biological processes that can be targets for intervention and prevention. Using data from a longitudinal study of 340 healthy young adults, we demonstrate that individual differences in threat-related amygdala reactivity predict psychological vulnerability to life stress occurring as much as 1 to 4 years later. These results highlight a readily assayed biomarker, threat-related amygdala reactivity, which predicts psychological vulnerability to commonly experienced stressors and represents a discrete target for intervention and prevention.

The temporal distribution of autobiographical memory: changes in reliving and vividness over the life span do not explain the reminiscence bump.

When autobiographical memories are elicited with word cues, personal events from middle childhood to early adulthood are overrepresented compared to events from other periods. It is, however, unclear whether these memories are also associated with greater recollection. In this online study, we examined whether autobiographical memories from adolescence and early adulthood are recollected more than memories from other lifetime periods. Participants rated personal events that were elicited with cue words on reliving or vividness. Consistent with previous studies, most memories came from the period in which the participants were between 6 and 20 years old. The memories from this period were not relived more or recalled more vividly than memories from other lifetime periods, suggesting that they do not involve more recollection. Recent events had higher levels of reliving and vividness than remote events, and older adults reported a stronger recollective experience than younger adults.

Emotional intensity predicts autobiographical memory experience.

College students generated autobiographical memories from distinct emotional categories that varied in valence (positive vs. negative) and intensity (high vs. low). They then rated various perceptual, cognitive, and emotional properties for each memory. The distribution of these emotional memories favored a vector model over a circumplex model. For memories of all specific emotions, intensity accounted for significantly more variance in autobiographical memory characteristics than did valence or age of the memory. In two additional experiments, we examined multiple memories of emotions of high intensity and positive or negative valence and of positive valence and high or low intensity. Intensity was a more consistent predictor of autobiographical memory properties than was valence or the age of the memory in these experiments as well. The general effects of emotion on autobiographical memory properties are due primarily to intensity differences in emotional experience, not to benefits or detriments associated with a specific valence.

Cumulative early life adversity predicts longevity in wild baboons.

In humans and other animals, harsh circumstances in early life predict morbidity and mortality in adulthood. Multiple adverse conditions are thought to be especially toxic, but this hypothesis has rarely been tested in a prospective, longitudinal framework, especially in long-lived mammals. Here we use prospective data on 196 wild female baboons to show that cumulative early adversity predicts natural adult lifespan. Females who experience ≥3 sources of early adversity die a median of 10 years earlier than females who experience ≤1 adverse circumstances (median lifespan is 18.5 years). Females who experience the most adversity are also socially isolated in adulthood, suggesting that social processes partially explain the link between early adversity and adult survival. Our results provide powerful evidence for the developmental origins of health and disease and indicate that close ties between early adversity and survival arise even in the absence of health habit and health care-related explanations.

A case study of pre-midlife crisis: an extraordinary transformational episode in an ordinary life

This case study explored a single in-depth narrative of an episode of crisis. The participant, an English Jewish man in his late thirties (Guy), was selected using a ‘random purposeful’ design from a sample who had previously participated in a study on the experience of crisis in pre-midlife adulthood. From a subgroup of participants chosen for giving full accounts of both inner and outer dimensions of crisis, the individual was selected randomly. Data collection comprised two interviews followed by an email discussion. The crisis occurred in Guy’s late thirties, just before the midlife transition, and so can be considered a ‘pre-midlife’ crisis. It subsumed the period surrounding leaving a high-profile banking career and a dysfunctional marriage, and the ensuing attempts to rebuild life after this difficult and emotional period. Qualitative analysis found four trajectories of personal transformation over the course of the episode: Firstly there was a shift away from the use of a conventional persona to a more spontaneous and ‘authentic’ expression of self; secondly there was a move away from materialistic values toward relational values; thirdly a developing capacity to reflect on himself and his actions; fourthly an emerging feminine component of his personality. The case study portrays an extraordinary event in the life of an ordinary man approaching middle age. It illustrates the transformative nature of crisis in ordinary lives, the dramatic nature of narrative surrounding crisis, and also illustrates existing theory about the nature of adult crises.

Selecting a measure of health-related quality of life.

Quality of life is becoming recognized increasingly as an important outcome measure which needs to be considered by social workers. However, there does not appear to be a clear consensus about the definition of quality of life. In addition, social workers are likely to experience difficulties choosing and applying an appropriate instrument with which to measure quality of life because of the many available instruments purporting to assess quality of life. This paper discusses the definition of health-related quality of life and explains the main measurement properties of an instrument that must be appraised when considering whether or not an instrument is appropriate. The paper will assist social workers to make an informed choice about measures of health-related quality of life.

Exclusion and Marginalisation in Adolescence: The Experience of School Exclusion on Drug Use and Antisocial Behaviour

Young people excluded from school are a group at an increased risk to drug use and antisocial behaviour during adolescence and later marginalisation and exclusion from society in adulthood (Blyth and Milner, 1993). As part of the Belfast Youth Development Study, a longitudinal study of the onset and development of adolescent drug use, young people who entered post primary school in 2000 (aged 11/12 years) were surveyed annually on four occasions. This paper reports on findings from this survey in relation to a supplementary group of young people who were surveyed because they had been excluded from school. The findings show higher levels of drug use and antisocial behaviour among school excludees, lower levels of communication with their parents/guardians, higher levels of contact with the criminal justice system and increased likelihood of living in communities characterised with neighbourhood disorganisation. This lifestyle perhaps suggests these young people are leading a life that is already taking them towards the margins of society.

Disabled Children Negotiating School Life: Agency, Difference and Teaching Practice

This paper explores the school experiences of seven 11–14 year old disabled children, and focuses on their agency as they negotiated a complex, changing, and often challenging social world at school where “difference” was experienced in negative ways. The paper draws on ethnographic data from a wider three-year study that explores the influence of school experiences on both disabled and non-disabled children’s identity as they make the transition from primary to secondary school in regular New Zealand schools (although the focus of the present paper is only on the experiences of disabled children). The wider study considers how Maori (indigenous people of Aotearoa/New Zealand) and Pakeha (New Zealanders of NZ European descent) disabled children and their non- disabled matched peers (matched for age, gender and classroom) understand their personal identity, and how factors relating to transition (from primary to secondary school); culture; impairment (in the case of disabled children); social relationships; and school experience impact on children’s identities. Data on Maori children’s school experiences is currently being collected, and is not yet available for inclusion in this paper. On the basis of our observations in schools we will illustrate how disabled children felt and were made to feel different through an array of structural barriers such as separate provision for disabled students, and peer and teacher attitudes to diversity. However, we agree with Davis, Watson, Shakespeare and Corker’s (2003) interpretation that disabled children’s rights and participation at school are also under attack from a “deeper cultural division” (p. 205) in schools based on discourses of difference and normality. While disabled students in our study were trying to actively construct and shape their social and educational worlds, our data also show that teachers and peers have the capacity to either support or supplant these attempts to be part of the group of “all children”. We suggest that finding solutions that support disabled children’s full inclusion and participation at school requires a multi-faceted and systemic approach focused on a pedagogy for diverse learners, and on a consistent and explicitly inclusive policy framework centred on children’s rights.

Implementing a resuscitation policy for patients at the end of life in an acute hospital setting: qualitative study

Objective : To explore attitudes and experiences of doctors and nurses regarding cardiopulmonary resuscitation for patients with end stage illness in an acute hospital. Design : Qualitative study; thematic analysis of two audio-taped focus groups and four semi-structured interviews. Setting : Acute district hospital, Northern Ireland. Participants : Seven nurses and nine doctors; varying nationality, gender and years of professional experience; involved in cardiopulmonary resuscitation decision-making. Results : Participants reported different interpretations of resuscitation policy and of what do not attempt to resuscitate (DNAR) decisions meant in relation to practical care for patients. This confusion in translating policy into practice contributed to communication difficulties in initiating, documenting and implementing cardiopulmonary resuscitation decisions. Participants were aware of how clinical conditions could change and reported uncertainty in determining end stage illness; they expressed fears of potential consequences of DNAR decisions for patients' care. The more disease-centred approach of doctors to patients' management, compared to nurses' more patient-centred approach, contributed to inter-professional conflict within teams. Doctors identified training needs in applying resuscitation policy and ethical principles in `real life' and nurses identified a need for ongoing professional support, which was perceived as being less available to junior doctors. Personal relationships between staff and patients, cultural reluctance to address sensitive issues and local community expectations of relatives being involved in decisions added to policy implementation difficulties. Conclusions : The findings indicate a need for ongoing staff support and training in applying resuscitation policy to decisions for patients with end stage illness in an acute hospital. They support suggestions that reviews of local resuscitation policy and of national guidelines should be undertaken with openness and honesty regarding the goals, opportunities and difficulties involved in trying to deliver good end of life care in local settings. Palliative Medicine 2007; 21 : 305—312 Key Words: do not attempt resuscitation (DNAR) • end stage illness • inter-professional • policy • resuscitation decisions