What is health and what is important for its achievement? : A qualitative study on adolescent boys’ perceptions and experiences of health

Few qualitative studies have explored adolescent boys’ perceptions of health. Aim: The aim of this study was therefore to explore how adolescent boys understand the concept of health and what they find important for its achievement Methods: Grounded theory was used as a method to analyse interviews with 33 adolescent boys aged 16 to 17 years attending three upper secondary schools in a relatively small town in Sweden. Results: There was a complexity in how health was perceived, experienced, dealt with, and valued. Although health on a conceptual level was described as ‘holistic’, health was experienced and dealt with in a more dualistic manner, one in which the boys were prone to differentiate between mind and body. Health was experienced as mainly emotional and relational, whereas the body had a subordinate value. The presence of positive emotions, experiencing self-esteem, balance in life, trustful relationships, and having a sense of belonging were important factors for health while the body was experienced as a tool to achieve health, as energy, and as a condition. Conclusion: Our findings indicate that young, masculine health is largely experienced through emotions and relationships and thus support theories on health as a social construction of interconnected processes. 

Fetal Movements in late Pregnancy : Categorization, Self-assessment, and Prenatal Attachment in relation to women’s experiences

Aim: To explore how pregnant women experience fetal movements in late pregnancy. Specific aims were:  to study women’s experiences during the time prior to receiving news that their unborn baby had died in utero (I), to investigate women’s descriptions of fetal movements (II), investigate the association between the magnitude of fetal movements and level of prenatal attachment (III), and to study women’s experiences using two different self-assessment methods (IV). Methods: Interviews, questionnaires, and observations were used. Results: Premonition that something had happened to their unborn baby, based on a lack of fetal movements, was experienced by the participants. The overall theme “something is wrong” describes the women’s insight that the baby’s life was threatened (I). Fetal movements that were sorted into the domain “powerful movements” were perceived in late pregnancy by 96 % of the participants (II). Perceiving frequent fetal movements on at least three occasions per 24 hours was associated with higher scores of prenatal attachment in all the three subscales on PAI-R. The majority (55%) of the 456 participants reported average occasions of frequent fetal movements, 26% several occasions and 18% reported few occasions of frequent fetal movements, during the current gestational week.  (III). Only one of the 40 participants did not find at least one method for monitoring fetal movements suitable. Fifteen of the 39 participants reported a preference for the mindfetalness method and five for the count-to-ten method. The women described the observation of the movements as a safe and reassuring moment for communication with their unborn baby (IV). Conclusion:  In full-term and uncomplicated pregnancies, women usually perceive fetal movements as powerful. Furthermore, women in late pregnancy who reported frequent fetal movements on several occasions during a 24-hour period seem to have a high level of prenatal attachment. Women who used self-assessment methods for monitoring fetal movements felt calm and relaxed when observing the movements of their babies. They had a high compliance for both self-assessment methods. Women that had experienced a stillbirth in late pregnancy described that they had a premonition before they were told that their baby had died in utero. 

Patients' experiences of support for learning to live with diabetes to promote health and well-being : A lifeworld phenomenological study

Learning to live with diabetes in such a way that the new conditions will be a normal and natural part of life imposes requirements on the person living with diabetes. Previous studies have shown that there is no clear picture of what and how the learning that would allow persons to incorporate the illness into their everyday life will be supported. The aim of this study is to describe the phenomenon of support for learning to live with diabetes to promote health and well-being, from the patient's perspective. Data were collected by interviews with patients living with type 1 or type 2 diabetes. The interviews were analysed using a reflective lifeworld approach. The results show that reflection plays a central role for patients with diabetes in achieving a new understanding of the health process, and awareness of their own responsibility was found to be the key factor for such a reflection. The constituents are responsibility creating curiosity and willpower, openness enabling support, technology verifying bodily feelings, a permissive climate providing for participation and exchanging experiences with others. The study concludes that the challenge for caregivers is to create interactions in an open learning climate that initiates and supports reflection to promote health and well-being.

The Broader Impact of Disability Research: Aligning Public Policy with the Experiences of People with Disabilities and Healthcare Providers

Thesis (Ph.D.)--University of Washington, 2016-07

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

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

Searching for Masculine Capital: Experiences Leading to High Drive for Muscularity in Men

Studies on the drive for muscularity (DFM) have primarily been quantitative, focused on identifying correlates. Currently little is known about men’s experiences leading them to desire high levels of muscle and engage in behaviours to increase their masculine capital. Our purpose was to explore the stories of men with high DFM revealing the socio-cultural and personal factors leading to DFM and their search for masculine capital. In-depth life-history interviews and multiple in-the-field conversations were undertaken with twenty men (Mean age=28.45, SD=6.96, years) scoring ≥ 3 on the Drive for Muscularity Scale (Mean=4.30, SD=0.70). Men’s stories focused on a set of dysfunctional childhood and adolescent socio-cultural interactions, including forms of symbolic violence, between them and significant others. In these interactions men were exposed to dominant social narratives of masculinity, and through comparisons and reinforcement they identified discrepancies between themselves and these narratives. In late adolescence and early adulthood men came to believe that they lacked masculine capital. Men struggled to increase their masculine capital through engagement with other traditional masculine activities (e.g., sport) and driven by activating events, they compensated through DFM desires and behaviours. This study advances knowledge by revealing the socio-cultural and personal processes participants believed led to their high DFM. Findings disclose that men’s search for masculine capital may have led them to develop and maintain high levels of DFM.

Exploring Intrinsic Gender Identity Using Second Life

Virtual Worlds (VWs) provide an environment to understand and explore notions of gender and identity, particularly given the ability for users to experiment with gender in online worlds. Our study analyses gender identity using the virtual space of Second Life (SL) to explore experiences and responses to gender in an avatar. We introduced 46 novice users to the VW of SL in order to see if real life gender influenced their choices of avatar. Participants selected the gender of their original avatar and once they were used to SL, they were then asked to change the gender of that avatar. We used mixed methods research consisting of paper based questionnaires (n=34) and focus groups (n=46) conducted in SL. Nearly all participants chose an initial avatar that reflected their real-life gender with females (n=22) reporting higher levels of identification with this initial avatar. Females were significantly more concerned with the gender-specific appearance of their initial avatar. On swapping gender, females reported higher levels of discomfort and many changed back before 7 minutes. Males (n=24) did not report significant discomfort with their changed-gender avatar and did not revert back to their original avatar as quickly. Our findings suggest that female participants in this study tended to reinforce gender binaries through such things as clothing, hairstyles and behaviors of their avatars. Male participants were less likely to experience discomfort through changing the gender of their avatar (with the males noting they still perceived an avatar with a female appearance as male).

Health-related quality of life: implications for critical care interventional studies and why we need to collaborate with patients.

Purpose of review: Health-related quality of life (HRQoL) is an important patient-reported outcome measure following critical illness. ‘Validated’ and professionally endorsed generic measures are widely used to evaluate critical care intervention and guide practice, policy and research. Although recognizing that they are ‘here to stay’, leading QoL researchers are beginning to question their ‘fitness for purpose’. It is therefore timely to review critiques of their limitations in the wider healthcare and social science literatures and to examine the implications for critical care research including, in particular, emerging interventional studies in which HRQoL is the primary outcome of interest. Recent findings: Generic HRQoL measures have provided important yet limited insights into HRQoL among survivors of critical illness. They are rarely developed or validated in collaboration with patients and cannot therefore be assumed to reflect their experiences and perspectives. Summary: Collaboration with patients is advocated in order to improve the interpretation and utility of such data. Failure to do so may result in important study effects being overlooked and the dismissal of potentially useful interventions.

The Lifelong Impacts of Adverse Experiences in the Early Years: Final Report

This report is an outcome of a half-day workshop that was held at The Lantern in St. John's on June 1st, 2016. “The Lifelong Impact of Adverse Experiences in the Early Years” brought together about 150 people who are in some way involved with the issue of adverse childhood experiences – that is, chronic neglect or abuse in the early years that is likely to have a negative impact over the entire course of a person’s life. A list of the attendees is provided in appendix, and it shows the wide variety of perspectives represented at the session, including that of clinicians, social workers, health care professionals, academic researchers, teachers, policy advisors and persons with lived experience.

The relationship of early social, mental, and behavioral experiences with adult obesity and Alcohol Use Disorder

Stressful life events early in life, including symptoms of mental disorders or childhood maltreatment, may increase risk for worse mental and physical health outcomes in adulthood. The purpose of this dissertation was to examine the effects of childhood Attention Deficit Hyperactivity Disorder (ADHD) symptoms and maltreatment experience on two adult outcomes: obesity and alcohol use disorder (AUD). Mediational effects of adolescent characteristics were explored. This dissertation used Waves I, III, and IV of the National Longitudinal Study of Adolescent to Adult Health. In Paper 1 (Chapter 3), we investigated the association between multiple types of child maltreatment and adult objective (body mass index; BMI) and subjective (self-rated) obesity, as well as mediating effects by adolescent characteristics including depressive symptoms and BMI. Results showed that after adjusting for sex, race/ethnicity, and maternal education, physical maltreatment was moderately associated with adulthood obesity as measured by BMI and self-reported obesity, while sexual maltreatment was more strongly associated with the objective measure but not the subjective measure. The indirect effects of mediation of adolescent BMI and depressive symptoms were statistically significant. In Paper 2 (Chapter 4), the objective was to examine mediation by adolescent depressive symptoms, alcohol consumption, peer alcohol consumption, and delinquency in the relationship between ADHD symptoms and adult AUD. The indirect effects of mediation of adolescent delinquency, alcohol consumption, and peer alcohol consumption were statistically significant in single and multiple mediator models. In Paper 3 (Chapter 5), the objective was to assess the joint effects of maltreatment/neglect on adult AUD. After adjusting for sex, race/ethnicity, child maltreatment, and parental AUD, ADHD symptoms were significantly associated with increased odds of AUD. There was no strong evidence of multiplicative interaction by maltreatment. This association was stronger for males than females, although the interaction term was not statistically significant. This dissertation adds to the literature by examining relationships between several major public health problems: ADHD symptoms, childhood maltreatment, AUD, depressive symptoms, and obesity. This project has implications for understanding how early life stress increases risk for later physical and mental health problems, and identifying potential intervention targets for adolescents.

PERCEPTIONS AND EXPERIENCES OF FAMILY CAREGIVERS OF BEDRIDDEN ELDERLY

Objective: To know the perceptions and experiences of family caregivers of bedridden elderly. Methods: A qualitative descriptive exploratory study conducted in January 2015 with four caregivers in a Family Health Center in the municipality of Araripe, CE. Data were collected through semi-structured interviews and the information was organized using the content analysis technique. A total of three categories emerged from the analysis of the reports of caregivers: the dependence process of the elderly; daily difficulties experienced by the caregiver; and satisfaction with the home care service. Results: The dependence process of the elderly took place as a consequence of pathological processes such as neoplasm, cerebrovascular accident and dementia. However, it could also be observed that physiological phenomena – common in old age – can also make individuals dependent on caregivers. As to the difficulties faced by the caregivers, they reported the need for greater involvement by the family, given that the centralization of work generates an overload and hence affects the care of the elderly. Teamwork in the home care context is fundamental, given that it allows a complementary and comprehensive care to the ledrely/caregiver binomial. Conclusion: Healthy aging is a major challenge to be overcome given that the development of a healthy lifestyle is difficult in all social strata. It is necessary to improve home care in order to provide support to caregivers so that the quality of life of bedridden elderly and caregivers is improved.

Caregivers' experiences and coping strategies relating to patient's subjective treatment-related cognitive impairment following Haematopoietic Stem Cell Transplant (HSCT)

The treatments involved in cancers of the blood and bone marrow can be physically and psychologically challenging and be associated with adverse secondary effects, including cognitive impairment. The incidence and severity of treatment-related cognitive impairment varies widely, however it can significantly impact quality of life by interfering with patients’ activities of daily living, relationships and future plans. It can also pose challenges for the patients’ caregivers, an area which has received comparatively less research attention. The aim of this study was to investigate caregivers’ experiences of treatment-related cognitive impairment in patients who have undergone Haematopoietic Stem Cell Transplant (HSCT); how they coped, both practically and emotionally, and what supports they believe could help them. Participants were caregivers to individuals who had undergone HSCT within the past 20 years and who had reported cognitive changes at the HSCT Late Effects Clinic, Beatson West of Scotland Cancer Centre. Five participants completed a single semi-structured interview. The data was then analysed using Interpretative Phenomenological Analysis (IPA). Results of this analysis illustrated four super-ordinate themes: noticing change; managing expectations, managing personal feelings and commitment. Findings from the current study highlighted the importance of caregiver education regarding post HSCT cognitive and behavioural changes and providing caregiver emotional support. Future research should explore the mutual needs of both care recipient and caregiver.

Cyber foraging for green computing, improving performance and prolonging battery life of mobile devices

The increasing dependency of everyday life on mobile devices also increases the number and complexity of computing tasks to be supported by these devices. However, the inherent requirement of mobility restricts them from being resources rich both in terms of energy (battery capacity) and other computing resources such as processing capacity, memory and other resources. This thesis looks into cyber foraging technique of offloading computing tasks. Various experiments on android mobile devices are carried out to evaluate offloading benefits in terms of sustainability advantage, prolonging battery life and augmenting the performance of mobile devices. This thesis considers two scenarios of cyber foraging namely opportunistic offloading and competitive offloading. These results show that the offloading scenarios are important for both green computing and resource augmentation of mobile devices. A significant advantage in battery life gain and performance enhancement is obtained. Moreover, cyber foraging is proved to be efficient in minimizing energy consumption per computing tasks. The work is based on scavenger cyber foraging system. In addition, the work can be used as a basis for studying cyber foraging and other similar approaches such as mobile cloud/edge computing for internet of things devices and improving the user experiences of applications by minimizing latencies through the use of potential nearby surrogates.

INFORMATION PRACTICES DURING LIFE TRANSITION: KOREAN IMMIGRANT WOMEN’S EVERYDAY LIFE INFORMATION SEEKING AND ACCULTURATION

In this dissertation, I explore information practices during life transition in the context of immigration. This study aims to understand how their unique personal, social, and life contexts shape immigration experiences, and how these diverse contexts are related to various information practices that they engage in to resolve daily information needs and achieve immigration goals. In my study I examined daily information needs and acquisition of Korean immigrant women. Data were collected through two interview sessions, diary entries on everyday information seeking up to three weeks, post-diary debriefing interviews to reveal contexts surrounding information practices, and observation sessions. My study shows that one’s accumulated experiences with information-related situations shape the person’s attitudes toward diverse information resources and habitual information practices. Both personal and social contexts surrounding immigrant women change during life transition and shape how they interpret their immigration experiences, what information they need to deal with both daily and long-term goals, and how they modify their information practices to obtain the relevant information in an unfamiliar information environment. Also, life transition of immigration entails changes in immigrant women’s social roles, which engender their daily responsibilities in the new society. These daily responsibilities motivate immigrant women’s everyday interactions with a variety of communities in order to exchange information and conduct their social roles in the new sociocultural environment. While immigrant women had common information needs around culture learning, social roles and associated responsibilities explain differences in their differing information needs and tend to direct daily information practices. The advancement of ICTs allows immigrant women to conduct their social roles in a remote city as well as to maintain multiple connections with both the heritage and host society. Limited cultural knowledge influences immigrant women’s evaluation and use of the obtained information as well as their acquisition of relevant information. This study provides understandings on the role of information during life transition as well as Korean immigrant women’s information practices.

Quality of life in institutionalized elderly undergoing an active aging program

Living with quality is a growing concern of the old population. There is an increasing institutionalization of the elderly, and it is in this context that active aging programs assume relevance, allowing the elderly the contact with experiences that allow them to age with quality of life, by maintaining their autonomy and promoting their physical, mental and emotional well-being. This study aims to assess the quality of life of institutionalized elderly undergoing to an active aging program. Methods: We have developed a semi-experimental study that considers the quantitative methodology in which the following instruments were used to measure the quality of life: Eurohis-Qol-8 (Pereira, Melo, Gameiro, & Canavarro, 2011) and Whoqol-Old (Vilar et al., 2010), to which sociodemographic and clinical questions were added. Assessments were made in two different moments, before and after the intervention program, in a sample of 37 institutionalized elderly. Results: Concerning the assessment of quality of life related to health (Eurohis-Qol-8), significant higher scores were obtained in the second moment (p = 0.004). Regarding the quality of life related to the elderly significant better scores were also obtained in the second assessment (p = 0.001). Conclusions: The results obtained allow us to conclude that using either of the measuring scales of Eurohis-Qol-8 or Whoqol-old, there is a perceived improvement in quality of life in those using the active aging program. Thus, institutionalized elderly must be the main target in the design and implementation of active aging programs.