An exploration into the palliative and end-of-life experiences of carers of people with Parkinson's disease

Although most people with Parkinson's disease are cared for in the community, little is known about family members' lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers' lived experiences of palliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson's disease were interviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had not been fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring for someone with Parkinson's disease not accessing specialist palliative care services. Participants also reflected upon the physical and psychological impact of caring in the advanced stage of Parkinson's. A multi-disciplinary team-based approach was advocated by participants. These findings provide important insights into the experience of caregiving to patients with Parkinson's disease in the home at the end-of-life stage. According to palliative care standards, patients and their carers are the unit of care; in reality, however, this standard is not being met.

The complex construction of psychological identities in Palestine: Integrating narratives and life experiences

Palestinian youth is challenged by multiple discourses in the process of constitution of its identity. This discursive multiplicity, characteristic of contemporary global societies, is confronted with personal life experiences, giving meaning to primarily nebulous affective impacts in the social environment. Starting from a semiotic-cultural perspective in cultural psychology one can establish a link between the notion of master narrative used by Hammack (2010) and the notion of myth-using the conception of ideology as a bridge that articulates both. Antinomies in the self-biographic narratives presented and discussed by Hammack (2010) support the master narrative of Palestinian identity and enter into interactions with other psychological identities of the interviewed youngsters, such as their religious tradition and secular education. Symbolic elements that are brought to the identity-making process by the diverse narratives are to be seen as resources for the comprehension of life experiences, demanding an integrative effort in the face of what is known and unknown in relation to alterity.

Life Experiences of People Affected by Crohn’s Disease and Their Support Networks Scoping Review

This scoping review identifies and describes relevant studies related to the evidence published on life experiences and perceived social support of people affected by Crohn’s disease. Twenty-three studies were definitely selected and analyzed for the topics explored. The overall findings show patients’ needs and perceptions. There is a lack of evidence about patients’ perceived needs as well as the understanding of social support that has contributed to improve their life experiences with that chronic illness. Lack of energy, loss of body control, body image damaged due to different treatments and surgeries, symptoms related to fear of disease, feeling burdened loss related to independence, and so on are some of the concerns with having to live with those affected by the Crohn. To underline those experiences through this scoping review provides valuable data for health care teams, especially for the nursing profession, considered by those affected as one of the main roles along the whole pathological process. This review provides the basis for developing broader research on the relatively underexplored topics and consequently improves specific programs that could address patients’ needs.

The bright side of prison life; experiences, in prison and out, of an involuntary sojourner in rebeldom.

Mode of access: Internet.

A Study of How Economic Attitudes Are Shaped by Environmental Shocks and Life Experiences

Social attitudes, attitudes toward financial risk and attitudes toward deferred gratification are thought to influence many important economic decisions over the life-course. In economic theory, these attitudes are key components in diverse models of behavior, including collective action, saving and investment decisions and occupational choice. The relevance of these attitudes have been confirmed empirically. Yet, the factors that influence them are not well understood. This research evaluates how these attitudes are affected by large disruptive events, namely, a natural disaster and a civil conflict, and also by an individual-specific life event, namely, having children.

By implementing rigorous empirical strategies drawing on rich longitudinal datasets, this research project advances our understanding of how life experiences shape these attitudes. Moreover, compelling evidence is provided that the observed changes in attitudes are likely to reflect changes in preferences given that they are not driven just by changes in financial circumstances. Therefore the findings of this research project also contribute to the discussion of whether preferences are really fixed, a usual assumption in economics.

In the first chapter, I study how altruistic and trusting attitudes are affected by exposure to the 2004 Indian Ocean tsunami as long as ten years after the disaster occurred. Establishing a causal relationship between natural disasters and attitudes presents several challenges as endogenous exposure and sample selection can confound the analysis. I take on these challenges by exploiting plausibly exogenous variation in exposure to the tsunami and by relying on a longitudinal dataset representative of the pre-tsunami population in two districts of Aceh, Indonesia. The sample is drawn from the Study of the Tsunami Aftermath and Recovery (STAR), a survey with data collected both before and after the disaster and especially designed to identify the impact of the tsunami. The altruistic and trusting attitudes of the respondents are measured by their behavior in the dictator and trust games. I find that witnessing closely the damage caused by the tsunami but without suffering severe economic damage oneself increases altruistic and trusting behavior, particularly towards individuals from tsunami affected communities. Having suffered severe economic damage has no impact on altruistic behavior but may have increased trusting behavior. These effects do not seem to be caused by the consequences of the tsunami on people’s financial situation. Instead they are consistent with how experiences of loss and solidarity may have shaped social attitudes by affecting empathy and perceptions of who is deserving of aid and trust.

In the second chapter, co-authored with Ryan Brown, Duncan Thomas and Andrea Velasquez, we investigate how attitudes toward financial risk are affected by elevated levels of insecurity and uncertainty brought on by the Mexican Drug War. To conduct our analysis, we pair the Mexican Family Life Survey (MxFLS), a rich longitudinal dataset ideally suited for our purposes, with a dataset on homicide rates at the month and municipality-level. The homicide rates capture well the overall crime environment created by the drug war. The MxFLS elicits risk attitudes by asking respondents to choose between hypothetical gambles with different payoffs. Our strategy to identify a causal effect has two key components. First, we implement an individual fixed effects strategy which allows us to control for all time-invariant heterogeneity. The remaining time variant heterogeneity is unlikely to be correlated with changes in the local crime environment given the well-documented political origins of the Mexican Drug War. We also show supporting evidence in this regard. The second component of our identification strategy is to use an intent-to-treat approach to shield our estimates from endogenous migration. Our findings indicate that exposure to greater local-area violent crime results in increased risk aversion. This effect is not driven by changes in financial circumstances, but may be explained instead by heightened fear of victimization. Nonetheless, we find that having greater economic resources mitigate the impact. This may be due to individuals with greater economic resources being able to avoid crime by affording better transportation or security at work.

The third chapter, co-authored with Duncan Thomas, evaluates whether attitudes toward deferred gratification change after having children. For this study we also exploit the MxFLS, which elicits attitudes toward deferred gratification (commonly known as time discounting) by asking individuals to choose between hypothetical payments at different points in time. We implement a difference-in-difference estimator to control for all time-invariant heterogeneity and show that our results are robust to the inclusion of time varying characteristics likely correlated with child birth. We find that becoming a mother increases time discounting especially in the first two years after childbirth and in particular for those women without a spouse at home. Having additional children does not have an effect and the effect for men seems to go in the opposite direction. These heterogeneous effects suggest that child rearing may affect time discounting due to generated stress or not fully anticipated spending needs.

Life Experiences of Youth Who Were Born with HIV Infection in Puerto Rico: The Voices of Young Survivors

The effectiveness of antiretroviral therapy (ART) transformed the pediatric HIV epidemic. The disease changed significantly over the course of three decades: while early in the epidemic it was almost always fatal, it has become a chronic condition. This study examined how perinatally-infected youth experience the impact of HIV in their lives. A qualitative study using interpretative phenomenological analysis (IPA) was conducted. Twenty in-depth interviews were carried out among 12 women and 8 men aged 18 to 30 years in Puerto Rico. These were conducted in Spanish, audio-recorded, transcribed and translated into English. While narrating their experiences, participants were interpreting what the situation meant to them and how they make sense of it. Three topics emerged: (1) perception and response to treatment and illness, particularly their lived experiences with ART; (2) disclosure experiences; and (3) family matters. Most participants challenged their therapy, in most cases to force their caregivers to disclose their status. Problems with adherence were attributed to busy schedules or forgetfulness. Participants experienced the disfiguring adverse effects of ART, which they endured for years without being informed that ART was the cause of these. Participants’ experiences with disclosure demonstrated the importance of validating them as individuals capable of managing their health. The paternalistic approach of withholding their diagnosis to spare them suffering resulted in increased anxiety. Participants acknowledged the difficulties of revealing their HIV status to their partners. They referred to family and friends as essential in coping with HIV. However, some encountered discrimination and stigma within their families. Participants who had suffered the loss of their parents found other parental figures such as adoptive parents or other family members. Most participants expressed a desire to have children. Perinatally HIV-infected youth will require health services for the rest of their lives. The adult health care into which they transition should consider their needs and journey. Services should consider including family members. This study underscores the need for improved access to mental health services. It is also essential to transcend medical treatment and develop a broader perspective of health care. Health care services should include reproductive decision-making counselling services.

End-of-life care in the intensive care setting : a descriptive exploratory qualitative study of nurses' beliefs and practices

Background: End-of-life care is a significant component of work in intensive care. Limited research has been undertaken on the provision of end-of-life care by nurses in the intensive care setting. The purpose of this study was to explore the end-of-life care beliefs and practices of intensive care nurses. Methods: A descriptive exploratory qualitative research approach was used to invite a convenience sample of five intensive care nurses from one hospital to participate in a semi-structured interview. Interview transcripts were analysed using an inductive coding approach. Findings: Three major categories emerged from analysis of the interviews: beliefs about end-of-life care, end-of-life care in the intensive care context and facilitating end-of-life care. The first two categories incorporated factors contributing to the end-of-life care experiences and practices of intensive care nurses. The third category captured the nurses’ end-of-life care practices. Conclusions: Despite the uncertainty and ambiguity surrounding end-of-life care in this practice context, the intensive care setting presents unique opportunities for nurses to facilitate positive end-of-life experiences and nurses valued their participation in the provision of end-of-life care. Care of the family was at the core of nurses’ end-of-life care work and nurses play a pivotal role in supporting the patient and their family to have positive and meaningful experiences at the end-of-life.Variation in personal beliefs and organisational support may influence nurses’ experiences and the care provided to patients and their families. Strategies to promote an organisational culture supportive of quality end-of-life care practices, and to mentor and support nurses in the provision of this care are needed.

A longitudinal study of the impact of chronic psychological stress on health-related quality of life and clinical biomarkers : protocol for the Australian Healthy Aging of Women Study

BACKGROUND: Despite advancements in our understanding of the importance of stress reduction in achieving good health, we still only have limited insight into the impact of stress on cellular function. Recent studies have suggested that exposure to prolonged psychological stress may alter an individual's physiological responses, and contribute to morbidity and mortality. This paper presents an overview of the study protocol we are using to examine the impact of life stressors on lifestyle factors, health-related quality of life and novel and established biomarkers of stress in midlife and older Australian women.The primary aim of this study is to explore the links between chronic psychological stress on both subjective and objective health markers in midlife and older Australian women. The study examines the extent to which exposure frightening, upsetting or stressful events such as natural disasters, illness or death of a relative, miscarriage and relationship conflict is correlated with a variety of objective and subjective health markers.Methods/design: This study is embedded within the longitudinal Healthy Aging of Women's study which has collected data from midlife and older Australian women at 5 yearly intervals since 2001, and uses the Allostastic model of women's health by Groer and colleagues in 2010. The current study expands the focus of the HOW study and will assess the impact of life stressors on quality of life and clinical biomarkers in midlife and older Australian women to explain the impact of chronic psychological stress in women. DISCUSSION: The proposed study hypothesizes that women are at increased risk of exposure to multiple or repeated stressors, some being unique to women, and the frequency and chronicity of stressors increases women's risk of adverse health outcomes. This study aims to further our understanding of the relationships between stressful life experiences, perceived quality of life, stress biomarkers, chronic illness, and health status in women.

‘A contributing life’: Living a contributing life as ‘a person’, ‘an artist’ and ‘an artist with a mental illness’

The Australian National Mental Health Commission, recently adopted a focus on ‘a contributing life’ to acknowledge the importance of full and meaningful participation in community life. This concept compels new conversations about the complex nature of every day and whole of life experiences for people with lived experience of mental illness. This article reflects on narratives by eight artists with lived experience of mental illness, in Australia to understand how opportunities are available through art for people with lived experience of mental illness to lead a contributing life. A twelve month study gained insight of how participants saw themselves, made meaning and sense of their experiences, and how each person asserted their choice to be an artist. This article shares a common premise held by the participants to choose a “way of life as ‘who I am’”. This declaration emphasised the relevance of living a contributing life as ‘a person’, ‘an artist’ and ‘an artist with a mental illness’. A number of conceptual issues are raised in light of the findings, not least how opportunities for participation are framed and available, or otherwise, to live a contributing life.

Safe spaces and sense of identity: views and experiences of lesbian, gay and bisexual young people

Empirical data on the life experiences of contemporary school-age lesbian, gay and bisexual (LGB) young people in Britain remains somewhat sparse. This paper reports the preliminary findings of a study conducted at a recently-initiated LGB youth Summer School. To further an appreciation of issues of concern to today's LGB teenagers, in-depth interviews were conducted with 10 Summer School participants (five female and five male, aged 15-18 years). The aim was to elicit their views and experiences relating to their need for support such as that offered by the Summer School. Themes drawn from participants' interviews are presented. Key issues included: being positioned as different by their majority heterosexual peers; feelings of isolation and loneliness in their peer groups and families; difficulties in finding others like themselves for companionship; and the importance of meeting more LGB people of their own age.

Perceptions of stressful life events in Northern Irish school children: a longitudinal study.

Adults’ perceptions of stressful life events have been acknowledged as important moderators of the stress adjustment relationship. Until recently, however, there has been a lack of research on children's perceptions of negative life events. This study assesses children's own perceptions of the stressfulness of negative familial, academic and social events as well as events related to the political conflict in Northern Ireland. Method: Developmental changes in children's perceptions of events are traced over time. One hundred and sixty 8-year-old children completed a self-report measure of the perceived stressfulness of a range of negative life events. The sample was drawn from schools in the Greater Belfast area to include children of both genders, primary religious affiliations in Northern Ireland (i.e., Protestant and Roman Catholic) and of varying socio-economic status. Three years later, 113 of these children, then aged 11, were traced through the school system and completed the same measure. Results: Children's perceptions of stressful events are related to a host of social factors. Girls viewed many negative events as more stressful than their male counterparts. Roman Catholic and Protestant children differed in their perceptions of conflict-related events. Perceptions of various types of negative experiences were differentially related to socio-economic status and age. Conclusion: Personal, social and situational factors differentially determine children's perceptions of negative life experiences.

Literary Love Making in Nicholas Sparks Novels: Finding the Balance Between the Writer's Life and Writer's Work in Bestselling Romantic Love

For almost a decade now Nicholas Sparks has been writing love stories. Not only has he been publishing his stories, but they have received high acclaim in each of their installments. Several of his novels have been made into major motion pictures and increased his popularity quite significantly. His status as a successful romantic fiction writer is undeniable, but the question is, why? What is it about Nicholas Sparks that makes his novels so engaging, and personally, what do I need to do as an aspiring novelist to try and acquire the same literary status? Sparks’s novels reach readers at a number of different levels, thus giving them appeal no matter the intellectual intent of the reader. Theoretically, Sparks engages reader response techniques as well as formalist processes such as “habitualization” and “defamiliarization,” while also developing engaging plot lines that represent many of the experiences from his own life. His writing is not only academically redeemable, but it is also creatively stimulating; between the two, Sparks represents the thunder and lightning combination all writers strive for while trying to achieve literary success. This project also offers a creative element in which I attempt to exemplify many of the traits discussed in the analytical sections of this document, by recreating them in a creative, fictitious fashion. Themes such as: motion versus stasis, life versus death, and the ordinary versus the extraordinary all exist within the narrative structure of my short story “Trip to Fall.” Besides these thematic elements, the creative section strives to represent the balance Sparks achieves between the experiences of his own life and the fictitious world he creates. Overall, this project delves into the life of Nicholas Sparks to better understand the inspiration for his writing at the level of form as well as content, while also paying tribute to Sparks’s style through a representation of his work in my own words.