Doctor of Philosophy (PhD) / Healthcare services and health research aim to improve the physical and psychosocial well being of consumers, and to offer responsive services needed and valued by them. Research in chronic kidney disease (CKD) has predominantly focused on investigating biomedical aspects and evaluating technological or pharmacological treatment interventions to improve medical management. While research into assessing patients’ and caregivers’ quality of life, and symptom burden, is growing minimal attention has been given to gaining a broad and in-depth understanding about the experiences, psychosocial issues and needs of patients and their caregivers. These need to be considered when planning and delivering patient-centred care and health research across the whole trajectory of CKD. The studies that form the major part of this thesis explore the perspectives, needs and experiences of CKD patients and their caregivers, within a broad and multidimensional framework encompassing aspects of the nature of the health and illness experiences and consumer perspectives. In Chapter 2, to understand what is known about parental experiences of caring for a child with CKD, the relevant qualitative literature was systematically reviewed and synthesized. Three inter-related clusters were identified: intrapersonal, interpersonal and external experiences. In Chapter 3, to gain a more detailed and broader understanding of this topic, in-depth interviews were conducted with parents of 20 children with CKD and 4 major themes were identified: absorbing the clinical environment, medicalising parenting, disrupting family norms, and coping strategies and support structures. In Chapter 4, to assess the effectiveness of support interventions for caregivers of patients with CKD, a systematic review was conducted which identified only three eligible studies that assessed only the effect of educational material on caregiver knowledge, not other domains. In Chapter 5, to describe and compare the broad range and depth of experiences and perspectives from predialysis, dialysis and transplantation patients, data from patient focus groups were analysed. The 5 themes that emerged from this data were: personal meaning of CKD, managing and monitoring health, lifestyle consequences, family impact, and informal structures. In Chapter 6, the focus groups were also used to elicit research priorities and identify reasons that patients used to develop their research priorities. A patient focused research agenda was elicited for CKD and 5 reasons that patients used to develop their research priorities were identified: normalisation of life, altruism, economic efficiency, personal concerns and clinical outcomes. During the focus groups, participants repeatedly expressed frustration about the poor public profile, and lack of community-based information on CKD prevention. So in Chapter 7, to assess how Australian news media covered prevention and early detection of CKD, I analysed television and newspaper stories that referred to CKD prevention or early detection. Kidney disease in general, and particularly the prevention and early detection of CKD, received virtually no media attention. When mentioned, it was mainly in the context of transplantation and donor stories, and seldom prevention or early detection, which appears largely unnewsworthy in its current form. At best, CKD received peripheral mention as a secondary concern in diabetes and obesity news stories which focused on lifestyle solutions. In Chapter 8, to develop a checklist for explicit and comprehensive reporting of qualitative studies (in-depth interviews and focus groups), I performed a comprehensive search in relevant publications for existing checklists used to assess qualitative studies. Seventy-six items from 22 checklists were compiled into a comprehensive list. All items were grouped into three domains: 1) research team and reflexivity, 2) study design, and 3) data analysis and reporting. The overarching purpose of these studies was to gain a better understanding about the needs, experiences and perspectives of CKD patients and their caregivers. The findings describe the permanent, profound and pervasive impact of CKD on the lives of patients and caregivers across the whole illness trajectory. A more detailed and broader understanding about patient and caregiver perspectives, as presented in this thesis, can support a move towards advancing patient-centred healthcare and research in CKD.

Doctor of Philosophy (PhD) / Healthcare services and health research aim to improve the physical and psychosocial well being of consumers, and to offer responsive services needed and valued by them. Research in chronic kidney disease (CKD) has predominantly focused on investigating biomedical aspects and evaluating technological or pharmacological treatment interventions to improve medical management. While research into assessing patients’ and caregivers’ quality of life, and symptom burden, is growing minimal attention has been given to gaining a broad and in-depth understanding about the experiences, psychosocial issues and needs of patients and their caregivers. These need to be considered when planning and delivering patient-centred care and health research across the whole trajectory of CKD. The studies that form the major part of this thesis explore the perspectives, needs and experiences of CKD patients and their caregivers, within a broad and multidimensional framework encompassing aspects of the nature of the health and illness experiences and consumer perspectives. In Chapter 2, to understand what is known about parental experiences of caring for a child with CKD, the relevant qualitative literature was systematically reviewed and synthesized. Three inter-related clusters were identified: intrapersonal, interpersonal and external experiences. In Chapter 3, to gain a more detailed and broader understanding of this topic, in-depth interviews were conducted with parents of 20 children with CKD and 4 major themes were identified: absorbing the clinical environment, medicalising parenting, disrupting family norms, and coping strategies and support structures. In Chapter 4, to assess the effectiveness of support interventions for caregivers of patients with CKD, a systematic review was conducted which identified only three eligible studies that assessed only the effect of educational material on caregiver knowledge, not other domains. In Chapter 5, to describe and compare the broad range and depth of experiences and perspectives from predialysis, dialysis and transplantation patients, data from patient focus groups were analysed. The 5 themes that emerged from this data were: personal meaning of CKD, managing and monitoring health, lifestyle consequences, family impact, and informal structures. In Chapter 6, the focus groups were also used to elicit research priorities and identify reasons that patients used to develop their research priorities. A patient focused research agenda was elicited for CKD and 5 reasons that patients used to develop their research priorities were identified: normalisation of life, altruism, economic efficiency, personal concerns and clinical outcomes. During the focus groups, participants repeatedly expressed frustration about the poor public profile, and lack of community-based information on CKD prevention. So in Chapter 7, to assess how Australian news media covered prevention and early detection of CKD, I analysed television and newspaper stories that referred to CKD prevention or early detection. Kidney disease in general, and particularly the prevention and early detection of CKD, received virtually no media attention. When mentioned, it was mainly in the context of transplantation and donor stories, and seldom prevention or early detection, which appears largely unnewsworthy in its current form. At best, CKD received peripheral mention as a secondary concern in diabetes and obesity news stories which focused on lifestyle solutions. In Chapter 8, to develop a checklist for explicit and comprehensive reporting of qualitative studies (in-depth interviews and focus groups), I performed a comprehensive search in relevant publications for existing checklists used to assess qualitative studies. Seventy-six items from 22 checklists were compiled into a comprehensive list. All items were grouped into three domains: 1) research team and reflexivity, 2) study design, and 3) data analysis and reporting. The overarching purpose of these studies was to gain a better understanding about the needs, experiences and perspectives of CKD patients and their caregivers. The findings describe the permanent, profound and pervasive impact of CKD on the lives of patients and caregivers across the whole illness trajectory. A more detailed and broader understanding about patient and caregiver perspectives, as presented in this thesis, can support a move towards advancing patient-centred healthcare and research in CKD.

Bakgrund: Bedside rapportering kan göra patienterna mer delaktiga i vården vilket kan medföra ett patientcentrerat förhållningssätt.  Både sjuksköterskan och patienten involveras genom bedside rapportering som kräver likväl ett patientcentrerat förhållningssätt som en god kommunikativ förmåga hos sjuksköterskan. Studier visar att patienter kan uppleva brister i sjuksköterskans kommunikativa förmåga, som att sjuksköterskan inte delger tillräcklig information samt gör egna antaganden om patientens behov. Kunskap om erfarenheter av bedside rapportering behöver därmed belysas. Syfte: Syftet var att beskriva erfarenheter av bedside rapportering ur ett sjuksköterske- och patientperspektiv samt beskriva de undersökningsgrupper som valdes ut i de granskade studierna. Metod: Beskrivande litteraturstudie med tio vetenskapliga studier av kvalitativ eller mixad ansats som kodades och kategoriserades. Litteratursökningarna gjordes i PubMed med fritext och MeSH-termer. Resultat: Resultatet visade att sjuksköterskornas kommunikativa förmåga i samband med bedside rapportering är viktig för att göra patienterna delaktiga. Bedside rapportering gav en stärkt relation mellan sjuksköterskorna och patienterna samt minskade risken för felaktig information. Bedside rapporten ansågs vara mer effektiv men väckte frågor angående konfidentialitet och sekretess. De flesta deltagarna i de inkluderade studierna var kvinnor. Nio av tio utfördes i Australien på olika avdelningar, exempelvis medicinavdelningar. Slutsats: Patienter ville veta vad som pågick i deras vård och sjuksköterskor beskrev att bedside rapportering ökade patienternas delaktighet. Bedside rapportering väckte även frågor angående konfidentialitet och patientcentrerad vård och kräver att sjuksköterskan har en god kommunikativ förmåga. / Background: Bedside handover can make the patients more involved in their care wich can contribute to a patient-centered approach. Both nurses and patients can get involved through the bedside handover wich requires a patient-centered appoach and puts demands on the nurses communicative ability. Studys show that the patients experience flaws in the nurses ability to communicate, like if the nurse doen’t provide enough information and makes assumption about the patients needs. Knowledge about experiences of bedside handover is therefore required. Aim: The aim was to describe experiences of bedside handover through a nurse and patient perspective and also to describe the sample group used in the audited studies. Method: A descriptive literature review with ten scientific articles using a qualitative and mixed method approach that were coded and categorized. The search for literature were made in PubMed using free text and MeSH- terms. Result: The nurses communicative abilities associated with bedside handover was important in making the patients more involved in their care. Bedside handover provided a strengthened relationship between the nurses and the patients and also limited the risks of incorrect information. The bedside handover was concidered beeing more effective but raised questions regarding confidentiality and secrecy. Most of the participants in the included studys were women. Nine out of ten were conducted in Australia on different wards, for example medicinewards.  Conclusion: The patients wanted to know whats going on regarding their care and the nurses described that bedside handover increaced the patients inolvment in care. Bedside handover raised questions about confidentiality and patient-centered care wich demands that the nurses have a good communicative ability.

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abstract: Communication between parents and school personnel plays a significant role in student achievement. Spanish-speaking parents are rather hesitant to seek assistance from their child’s school as cultural and language barriers have created a mindset that they are not supported, understood, or valued. Key stakeholders in education therefore need to acquire a clearer understanding of the Latino culture in a dire effort to better serve Hispanic students in high school and their families. This study examined the perceptions of first-generation Latino parents of high school students while identifying parental needs to improve their child’s college readiness upon completion of high school. It also investigated high school graduation rates and student dropout rates across the United States as well as effective and efficient ways in which the school can enhance the provision of school-related resources to their students. There is wide consensus that parental involvement (including home-based involvement, home-school communication, and school-based involvement) is essential for student success. Despite this understanding, there exists a gap in literature regarding the information, resources, and support available to first-generation Latino parents with children in high school. Using a conceptual framework that draws on theories of cultural and social capital, and a qualitative approach that included field notes, focus groups, and interviews, this study investigated the expectations, lived experiences, perceptions, and practices of 29 Latino immigrant parents of high school students in relation to their child’s secondary school. The findings of this study, which suggest varying levels of parental involvement, were organized around four themes: aspirations, parental support, school-based knowledge, and student preparation. / Dissertation/Thesis / Doctoral Dissertation Educational Administration and Supervision 2016

The main objective of the study was to investigate the relationship between parent-related, acculturation-related, and substance use-related variables found within individual, familial/parental, peer and school adolescent ecological domains, in a clinical sample (i.e. adolescents who met criteria for a Diagnostic Statistical Manual-IV [DSM-IV] clinical diagnosis of substance abuse/dependence) of Hispanic adolescents from Miami, Florida. The sample for this study consisted of 94 adolescent-mother pairs. The adolescent sample was 65% male, and 35% female, with a mean age of 15 years. More than half of the adolescents were born in the United States (60%) and had resided in the U.S. for an average of 12 years; 80% of the caregivers (primarily mothers) were foreign-born and lived in the U.S. for an average of 21 years. Correlation and hierarchical regression were used to answer the research questions. The findings indicate that the hypothesized model and corresponding anticipated effect of the relationship between parental school and peer involvement on adolescents’ frequency of alcohol, marijuana and cocaine use was not supported by the data. Parental “acculturation-related” variables did not explain any of the variance in adolescent substance use frequency in this sample. Mediation and moderation models were not supported either. However, some interesting relationships were found: The larger the acculturation gap, the lower the parental involvement in school tended to be (r = -.21, p < .05). Adolescents who experienced a greater acculturation gap with their parents (-.81, p >.01) had an earlier onset of marijuana (-.33, p < .01) and cocaine use (r = -.24, p .05), they also reported using marijuana more frequently than females (.21, p >.05).

An enterprise resource planning system (ERP-system) is a data system that connects modules within several administrative areas. ERP-systems can give companies the opportunity for increased efficiency since all administrative areas can be managed through one system. However, ERP-systems do not always meet the expectations that the companies have, where it is estimated that only half of the companies manage to realize the benefits that ERP-systems offer. This raises the question why some companies fail in their implementation and how this can be avoided. The purpose is thus to investigate what experiences organizations have taken with them from failed ERP-implementations and through this gain an increased understanding of the causes of critical failure factors and how they can be counteracted. The study has been carried out using a qualitative method where data has been collected through semi-structured interviews with people who have experience in implementing ERP-systems. This is also complemented by previous research which is compiled into a framework used to better understand the collected data. The study states that leadership is often the basis for many of the problems but also the solution to the problems that arise in the implementation, the central aspects of leadership are discussed with the help of previous research as well as empirical findings. One of the most frequently discussed factors by the respondents is involvement, which refers to the difficulties for companies in determining how many and which people should be involved in the implementation. Success in this has a major impact on the internal attitude and receptivity to change. Furthermore, it is stated that there are certain differences between larger and smaller companies, where the smaller companies are more vulnerable to institutional forces. Also, that many organizations experience difficulties in communication with their supplier of the ERP-system, where the system does not meet all the client's needs as a result.

The construct of educational accountability formally originated in 2001 as a means to improve education standards by holding teachers accountable for student academic progress; however, the definition of educational accountability for parents continues to be illusive. The purpose of this generic, qualitative study was to explore the perceptions of educational accountability among single, African American mothers of high school-aged children. The research question asked about how the beliefs of educational accountability among single African American mothers related to any involvement in their children's education. Azjen's theory of planned behavior, which outlines the relation of intention to action, was the framework used to analyze the attitudes and perceived behavior control of the participants regarding parental involvement. Data collected from one-on-one interviews with 5 single African American mothers were transcribed and analyzed using manual open coding and thematic analysis. The results of the study indicated that the mothers' intentions to be more involved in their children's education played a significant role in the outcome of their children's academic success, whether or not they were actively present in the school. Parental involvement may be explained by the overall socialization of children toward these intentions. It is recommended that educational institutions explore alternate options of parental involvement tailored to meet the needs of parents to be involved. This study contributes to social change by informing educators and African American families to collaborate to instill positive involvement in children's' educational planning.

The purpose of this study is to examine parent-adolescent relationships as perceived by adolescents and its relationship with adolescents’ adjustment. In order to measure parent-adolescent relationships psychological control, involvement, parental warmth and communication have been used as variables. Furthermore, self-esteem, school adjustment, substance use and depression are used as measures of adolescents’ adjustment outcomes. The study’s cross sectional survey design utilized a stratified random sample with structured questionnaires for the collection of quantitative data involving multiple variables that are examined to detect patterns of association and prediction. The participants comprise 809 adolescents (Males = 427 and Females = 382) from four private and government high schools and the average age of participants is 16.8. The participants were randomly selected from Grade Level 9, 10, 11 and 12. Independent t-test, correlation, and regression analyses are used to analyse the data in this research. The results of the independent sample t-test on the perception of adolescents’ relationship with their parents showed that male adolescents perceive their mothers and fathers as more psychologically controlling than female adolescents. On the other hand, female adolescents perceive their mothers and fathers as warmer; more involved in their schooling; and engage in a more positive communication than do the male adolescents. In addition, the independent sample t-test also shows that male adolescents exhibit more adjustment problems than do female adolescents. Specifically, male adolescents seem to show more substance use behaviour, have lower self-esteem, more school adjustment problems and a higher depression level as compared to female adolescents. The correlation analysis reveals that there is a significant relationship among the four-parent-adolescent relationship and adolescent adjustment variables. The regression analysis also demonstrates that the four-parent-adolescent relation predictor variables account for adolescent adjustment though their contribution to the prediction was varied by the gender of the adolescents’ parents. This research; however, does not consider father-adolescent communication as a significant predictor to adolescent school adjustment and mother-adolescent communication as a significant predictor to adolescent depression. Theoretically, the present findings provide evidence that positive parent-adolescent relationships can be considered as a relevant protective factor for adolescents. For policy consideration, it is suggested that efforts be made to establish quality after school youth programs to engage adolescents in several mentoring activities, and family based coping programs should be established based on the centrality of the family for better family functioning. / Von Krosigk, Beate. / Psychology

Inledning: Syftet med studien var att ta reda på hur en metod för neuropsykiatriska utredningar upplevdes av de föräldrar som deltagit i den. Utredningsmetoden kallas TA-C, eng. Therapeutic Assessment with Child. I den sätts särskilt värde till delaktighet och den terapeutiska potentialen. Frågeställningar: 1: Vad var föräldrarnas anledning att söka utredning? Hur beskrev föräldrar sig delaktiga i den neuropsykiatriska utredningen av deras barn? Hur var utredningen till hjälp att förstå sitt barn? Metod: Kvalitativ metod, semistrukturerad intervju, 10 föräldrar som genomgått en form av neuropsykiatrisk utredning för deras barn. Resultat: Resultatet visar att föräldrarna har upplevt betydande delaktighet och förståelse för sitt barn, och kopplar ofta ihop begreppen, som att de har en ömsesidig påverkan. Det upplevdes i huvudsak under arbetet med frågeställningar som blev kopplade till vardagen, i att de deltog i utredningens samtliga delar, i att de fick vara med, uppmuntra och observera, samt att de löpande kunde resonera och delta med barnet och utredarna. Några uppfattade minskad delaktighet och förståelse i samband med återgivningen av resultatet. Diskussion: I diskussionen används begreppen delaktighet och förståelse i samverkan, samspel, intersubjektivitet, anknytning och mentalisering. Studien synliggör den terapeutiska effekten med den sortens utredning. / Introduction: The aim of this study was to find out how a particular method for neuropsychiatric assessments was experienced by the parents who participated in it. The Assessment method is called Therapeutic Assessment with Child, which add particular value to participation and the therapeutical potential. Questions: What was the parents’ need to seek assessment? How did parents describe their involvement in the neuropsychiatric assessment of their child? How was the assessment helping to understand the child? Metod: Qualitative method, semi-structured interview, 10 parents of children who have undergone a certain neuropsychiatric assessment. Resultat: The results show that parents have experienced significant involvement and understanding of their child, and often link together those concepts, as they have a mutual influence. It was felt mainly during work on issues that were related to everyday life, in that they participated in the assessment in all the parts, in that they could be involved, encourage and observe, and that they continously could discuss and engage with the child and the assessors. Some perceived reduced participation and understanding in relation to the presentation of the result. Diskussion: The discussion uses the terms participation and understanding collaborating, interaction, intersubjectivity, attachment and mentalization. The study reveals the therapeutic effect of the kind of assessment.