Parental experience of childhood cancer using Interpretative Phenomenological Analysis

Whilst survival rates for childhood cancer have improved dramatically over the past three decades, it is still a devastating diagnosis for family members and an illness which severely disrupts the lifestyle of the family unit. Developing an understanding of the impact of the illness on the family is crucial to better support families’ deal with the demands of the illness. In this study 9 families in which a child was diagnosed with cancer were interviewed twice over a 12 month period, approximately 6 months apart. Using Interpretative Phenomenological Analysis (IPA), a semi-structured interview was used to explicate parent’s experience of childhood cancer. The results revealed 5 super ordinate themes; (1) a pivotal moment in time, (2) the experience of adaptation in relation to having a sick child, (3) the nature of support, (4) re-evaluation of values during a critical life experience and (5) the experience of optimism and altruism. Findings indicate that parents express both negative and positive experiences as they re-evaluate the meaning and purpose of life, seek to redefine themselves, often in terms of priorities, relationships, sense of community, and achieve degrees of optimism and altruism. Implications for addressing the needs of parents and for further research are discussed.

'My grandchild has a disability' : impact on grandparenting identity, roles and relationships

Being a grandparent is an important and valued role for many older adults, who often have strong views about the type of grandparent they will be and what they will teach their grandchild. When their grandchild has a disability, grandparents may have to significantly adjust their expectations and interactions. This research explores if and how having a grandchild with a disability influences grandparents’ sense of identity and enactment of the grandparent role. Using qualitative purposive sampling, semi-structured interviews were conducted with 22 grandparents of children with an intellectual and/or physical disability residing in Brisbane, Australia. A thematic analysis identified three key themes characterising grandparent’s views: formation of grandparenting identity, styles of grandparenting, and role enactment. The results highlight the critical role of grandparents when a child has a disability, illustrating that the grandparenting experience and role enactment may be universal with only the context and delivery varying.

Parental responsibility and removal of life sustaining treatment : Re Baby D

The case of Re Baby D (No. 2) has been described as a “landmark decision” as to whether parents themselves can authorise medical staff to withdraw life-sustaining treatment from their child or are required to seek the permission of a court or tribunal. The reasons for the decision that the removal of an endotracheal tube from the airway of Baby D was to treat “a bodily malfunction or disease” and therefore could be authorised by the parents will be explored.

Laughing & disability : comedy, collaborative authorship and Down Under Mystery Tour

This thesis is an exploration of representation, authorship and creative collaboration in disability comedy, the centre piece of which is a feature-length film starring, co-created and co-written by three intellectually-disabled people. The film, entitled Down Under Mystery Tour, aims to entertain, and be accessible to, a mainstream audience, one that would not normally care about disability or listen to disabled voices. In the past, the failure of these voices to reach audiences has been blamed on poor training, marginal timeslots and indifferent audiences. But this project seeks an alternative approach, building collaboration between disabled and non-disabled people to express voice, conceive, construct and produce a filmed narrative, and engage willing audiences who want to listen.

Community psychology : panic or panacea

The growing social upheaval and intensifying tensions in South Africa have by their very nature evoked concern and panic among mental health professionals. In an attempt to alleviate the concomittant anxiety and appear to be more responsive to the majority, many psychologists have boarded the community psychology wagon to cross the great divide between the comfortable consultancy room and the masses. In assessing whether community psychology is the appropriate vehicle for crossing the rubicon, we will start with an overview of different models of community psychology focusing on their different conceptualizations of mental illness and how each model sees the role of the psychologist in the context of psycho-social change.

Diagnosed artist : what is the understanding of 'artist' held by a person with a mental illness?

What is the understanding of ‘artist’ held by a person with a mental illness? Being diagnosed with a mental illness often results in social isolation. Art programs are often used to address this isolation, and to expedite positive mental health and wellbeing. In these programs the cultural value of art can be moderated and replaced with therapeutic meanings or used for purposes of community integration. Some individuals develop artistic identities within these programs. These artists personify representative tensions within the art world. Artists with mental illness are symbolically positioned within the history of art as holding special creative providence and, yet are also viewed as having a peripheral position outside the cultural framework of the art world. This research engaged with eight artists to determine the understanding of artist held by a person with a mental illness. Through shared activities around the curatorial aspects of an exhibition entitled "Artist Citizen" the impact of illness, culture and alterity were examined. Overlapping approaches of Community Cultural Development and Participatory Action Research have been used. A perspective of alterity is given which was apparent in transformative processes of the research. This thesis shows that alterity and difference are both important social resources as well as positions of isolation and discrimination. Finally, conclusions are presented that indicated that a more nuanced understanding of alterity offers potential to discussions of the complex experiences of a person with a mental illness to negotiate subjective constructions of an identity for participation in broader political, social, health and cultural contexts.

“That you would post such a thing implies that you are a despicable human being”: spectatorship, social media, & the struggle for meaning in disability performance

Artists with disabilities working in Live Art paradigms often present performances which replay the social attitudes they are subject to in daily life as guerilla theatre in public spaces – including online spaces. In doing so, these artists draw spectators’ attention to the way their responses to disabled people contribute to the social construction of disability. They provide different theatrical, architectural or technological devices to encourage spectators to articulate their response to themselves and others. But – the use of exaggeration, comedy and confrontation in these practices notwithstanding – their blurry boundaries mean some spectators experience confusion as to whether they are responding to real life or a representation of it. This results in conflicted responses which reveal as much about the politics of disability as the performances themselves. In this paper, I examine how these conflicted responses play out in online forums. I discuss diverse examples, from blog comments on Liz Crow’s Resistance on the Plinth on YouTube, to Aaron Williamson and Katherine Araneillo’s Disabled Avant-Garde clips on YouTube, to Ju Gosling’s Letter Writing Project on her website, to segments of UK Channel 4’s mock reality show Cast Offs on YouTube. I demonstrate how online forums become a place not just for recording memories of an original performance (which posters may not have seen), but for a new performance, which goes well beyond re-membering/remediating the original. I identify trends in the way experience, memory and meaningmaking play out in these performative forums – moving from clarification of the original act’s parameters, to claims of disgust, insult or offense, to counter-claims confirming the comic or political efficacy of the act, often linked disclosure of personal memory or experience of disability. I examine the way these encounters at the interstices of live and/or online performance, memory, technology and public/private history negotiate ideas about disability, and what they tell us about the ethics and efficacy of the specific modes of performance and spectatorship these artists with disabilities are invoking.

The assessment of mental health in children with intellectual disability

Aim: Individuals with intellectual disability (ID) have higher rates of mental health problems than the general population. Assessment tends to rely heavily on self-report, but persons with ID often have difficulties in identifying and describing their own thoughts and feelings. Measures that are psychometrically sound with typically developing populations may not be as robust in samples with ID. The aim of the current study was to examine a range of self-report measures for assessing the mental health of children with ID, and to consider the appropriateness of minor modifications to those instruments. Method: The participants were 58 children with ID (mean 11.7 years) attending Year 6 in mainstream primary schools. At the first time point they completed four established measures of depression, anxiety and mood. Minor modifications were made to wording and format at re-administration six months later. Results: Internal consistency varied considerably across measures. Modifications resulted in small or no improvements, but the results were relatively consistent over time and across similar measures. Some gender differences were evident. Conclusions: The findings confirm the difficulties that children with ID may have when responding to self-report measures of mental health, and suggest that care should be taken in choice of instruments. While modifications can produce small improvements, it is clear that more robust measures of mental health are needed for persons with ID.

Alcohol and the foetus

The foetal alcohol syndrome (FAS) was first identified as a syndrome in 1973. Since then a large body of research has accumulated. The full syndrome in which heavy alcohol use in pregnancy results in growth retardation, a characteristic facial dysmorphology and brain damage will be described. FAS is the commonest preventable, known cause of intellectual handicap, however, a large proportion of people with partial foetal alcohol syndrome have an intelligence in the normal range. Those with the full syndrome and with identified and diagnosed, intellectual handicap are more likely to receive appropriate services. Those with an intelligence in the normal range, suffer from severe psycho- social disabilities resulting in homelessness, mental illness and frequently criminality. There is a larger number of people with a partial syndrome who also suffer from high rates of secondary disability including learning problems and 70% of FAS people also have ADD or ADHD...

Symptoms of heat illness in surface mine workers

Objective: To assess the symptoms of heat illness experienced by surface mine workers. Methods: Ninety-one surface mine workers across three mine sites in northern Australia completed a heat stress questionnaire evaluating their symptoms for heat illness. A cohort of 56 underground mine workers also participated for comparative purposes. Participants were allocated into asymptomatic, minor or moderate heat illness categories depending on the number of symptoms they reported. Participants also reported the frequency of symptom experience, as well as their hydration status (average urine colour). Results: Heat illness symptoms were experienced by 87 and 79 % of surface and underground mine workers, respectively (p = 0.189), with 81–82 % of the symptoms reported being experienced by miners on more than one occasion. The majority (56 %) of surface workers were classified as experiencing minor heat illness symptoms, with a further 31 % classed as moderate; 13 % were asymptomatic. A similar distribution of heat illness classification was observed among underground miners (p = 0.420). Only 29 % of surface miners were considered well hydrated, with 61 % minimally dehydrated and 10 % significantly dehydrated, proportions that were similar among underground miners (p = 0.186). Heat illness category was significantly related to hydration status (p = 0.039) among surface mine workers, but only a trend was observed when data from surface and underground miners was pooled (p = 0.073). Compared to asymptomatic surface mine workers, the relative risk of experiencing minor and moderate symptoms of heat illness was 1.5 and 1.6, respectively, when minimally dehydrated. Conclusions: These findings show that surface mine workers routinely experience symptoms of heat illness and highlight that control measures are required to prevent symptoms progressing to medical cases of heat exhaustion or heat stroke.

Associations exist between food insecurity, poor diet, chronic illness and obesity among an Australian population

Food insecurity is the limited availability of, or access to, sufficient amounts of nutritious, culturally-appropriate and safe foods, or the inability to access such foods by socially-acceptable means. Evidence from the United States and Canada suggests that food insecurity may be associated with poor dietary intakes, obesity, and chronic disease including depression and diabetes, thus constituting a significant public health issue. Currently, no existing studies have investigated the dietary and health factors associated with food insecurity among the general Australian population. The current study investigated the potential associations between food insecurity, diet and health among Australian adults (18 years and over) participating in the cross-sectional National Health Survey (n = 19,500). Data were analysed by logistic regression adjusting for sociodemographic covariates. Those from food insecure households were 50% less likely to consume the recommended number of servings of fruit, 60% more likely to report poor health and experienced a 6-fold increase in the risk of severe depressive disorders, compared to their food secure counterparts. Furthermore, food insecurity was associated with a 50% increase in the risk of being diagnosed with ‘high sugar levels’. Finally, women from food insecure households were 30% more likely to be obese compared to their food secure counterparts. These findings suggest that food insecurity may play an important role in preventing adherence with national dietary recommendations, and may increase the risk of obesity and chronic illness. This has important implications for both clinical practice, and the development of interventions and policy to address food insecurity.

Ambulance use is associated with higher self-rated illness seriousness : user attitudes and perceptions

Objectives The objective was to study the role and effect of patients' perceptions on reasons for using ambulance services in Queensland, Australia. Methods A cross-sectional survey was conducted of patients (n = 911) presenting via ambulance or self-transport at eight public hospital emergency departments (EDs). The survey included perceived illness severity, attitudes toward ambulance, and reasons for using ambulance. A theoretical framework was developed to inform this study. Results Ambulance users had significantly higher self-rated perceived seriousness, urgency, and pain than self-transports. They were also more likely to agree that ambulance services are for everyone to use, regardless of the severity of their conditions. In compared to self-transports, likelihood of using an ambulance increased by 26% for every unit increase in perceived seriousness; and patients who had not used an ambulance in the 6 months prior to the survey were 66% less likely to arrive by ambulance. Patients who had presented via ambulance stated they considered the urgency (87%) or severity (84%) of their conditions as reasons for calling the ambulance. Other reasons included requiring special care (76%), getting higher priority at the ED (34%), not having a car (34%), and financial concerns (17%). Conclusions Understanding patients' perceptions is essential in explaining their actions and developing safe and effective health promotion programs. Individuals use ambulances for various reasons and justifications according to their beliefs, attitudes, and sociodemographic conditions. Policies to reduce and manage demand for such services need to address both general opinions and specific attitudes toward emergency health services to be effective.

The impact of chronic childhood illness on family stress : a comparison between autism and cystic fibrosis

Compared the different patterns of stress reported by mothers of children (aged 5–12 yrs) with either a chronic physical illness (cystic fibrosis) or a chronic psychological disorder (autism), and children without a physical or psychological disorder. 24 mothers from each of these 3 groups completed a short form of the Questionnaire on Resources and Stress. Each clinical group exhibited different patterns of stressful response consistent with the nature of the disorder and the requirements of care imposed on the families. Autism contributed significantly more to family stress than did cystic fibrosis. The number of children in the family was not a significant variable. Implications for the development of family intervention programs are discussed

Hospital and home : strange bedfellows or new partners?

This paper addresses the hospital/community interface as an emerging context of health care practice. As a consequence of industry reforms health service managers are looking to the community space as a location for delivery of acute health care. This focus on the community is sharpened by the promise of cost savings and enhanced by the seemingly limitless potential of biomedical technology. The paper argues that the interface of hospital and community is a conceptual space where two different types of health services meet, bringing with them different cultural practices and expectations. The ‘hospital in the home’ programs that structure health care at this interface provide the delivery of acute nursing and medical care and the accoutrements of this care in the community, the neighbourhood, the home. Consequently, the home is becoming the new site for high technology ‘hospital’ care. This domestication of illness technology is contrasted with the notion of home as a place of sanctuary, familiarity and belonging.

Making sense of mental illness as a full human experience : Perspective of illness and recovery held by people with a mental illness living in the community.

Recovery is a highly contextualized concept amid divergent interpretations and unique experiences. There is substantial current interest in building evidence about recovery from mental illness in order to inform best practice founded in the ways people find to live productive and meaningful lives. This paper presents some accounts related to recovery and illness expressed by eight people through a Participatory Action Research project. The research facilitated entry to the subjective experiences of living in the community as an artist with a mental illness. The people in the research shared an integrated understanding of illness, recovery and identity. Their understanding provided insight into mental illness as an inseparable aspect of who they were. Further, specific issue was raised of recovery as a clinical term with a requirement to meet distinct conventions of recovery. This paper emphasizes that being ill and being well, for the person with a mental illness, is a dynamic and complex development not easily explained or transformed into uniform process or outcomes. Attempts to establish an integral or consensual approach to recovery has, to date, disregarded mental illness as a full human experience. This paper argues that broader frameworks for thinking and responding to the dynamic processes of mental illness and recovery are needed and require acknowledgment of competing and contradictory ideas.