Bakgrund: Svårläkta bensår kan orsakas av en rad olika diagnoser. Sjuksköterskan har en viktig roll vid behandling av bensår, för optimal behandling behöver hela patientens situation beaktas. Tidigare forskning visar att patienter med svårläkta bensårs livskvalitet är påverkad genom nedsatt rörlighet, smärta, klåda, lukt, sömnrubbningar och social isolering. För att sjuksköterskan ska kunna förbättra hälsorelaterad livskvalité (HRQOL) hos patienter med bensår måste kunskap om vad som påverkar detta skapas. Syfte: Syftet med studien var att belysa skillnader i hälsorelaterad livskvalité med avseende på olika diagnosgrupper vid svårläkta bensår. Metod: En kvantitativ design har använts i studien som genomfördes med hälso-och livsstilsenkäten RAND36. Enkäterna fördes in i programmet SPSS och vid den statistiska analysen användes Kruskal-Wallis test och Chi-Square test för få fram signifikansvärden. Resultat: Mellan diagnosgrupperna fanns en signifikant skillnad inom domänerna fysisk funktion och generell hälsa och en påvisad signifikant skillnad mellan diagnosgrupperna och rörelseförmåga. Diskussion och konklusion: HRQOL var påverkat hos patienter med bensår inom domänerna fysisk funktion och generell hälsa och det behövs utvecklas metoder för att identifiera och förbättra HRQOL i omhändertagande av patienter med bensår. För att följa omvårdnadsresultat som är hälsofrämjande för patienten med bensår bör vårdresultat och hälsoeffekter mätas. / Background: Chronic leg ulcer may be caused by a variety of diagnoses, often interacted by several factors. The nurse has an important role in the treatment of leg ulcers, for optimal treatment you have to take the whole situation into account. Previous research shows that patients with chronic leg ulcers health related quality of life (HRQOL) is affected by reduced mobility, pain, itching, odor, sleep disorders and social isolation. To improve HRQOL for patients with leg ulcers the nurse need more knowledge about what causes it. Aim: To illustrate the differences in HRQOL with regard to different diagnostic groups for chronic leg ulcers. Method: A quantitative design has been used in the study and was performed with the health-related quality of life survey RAND36. The questionnaires were entered in program SPSS and in the statistical analysis, the Kruskal-Wallis test and chi-square test where used for obtaining significant values. Results: Between diagnostic groups is a significant difference in the domains of physical functioning and general health and a demonstrated significant differences between diagnostic groups and mobility. Discussion and conclusion: HRQOL was affected in patients with leg ulcers in the domains of physical functioning and general health. It is a need to develop methods for identifying and improving HRQOL in the care of patients with leg ulcers. To follow the care results that are improving health for patients with leg ulcers should care and health outcomes measured.

Background: There are over 300 Primary Immunodeficiency diseases (PID) that are a result of a genetic or idiopathic dysfunction of any aspect of the immune system. These conditions result in a higher frequency of infections, autoimmune conditions, or malignancies. Moderate intensity exercise is thought to help the immune system, while high intensity exercise may have a negative impact on immune function. The impact of exercise on individuals with an impaired immune system due to PID is not yet understood. Purpose: The purpose of this study was to investigate whether a low to moderate intensity exercise program would have an effect on stress, fatigue, and quality of life (QoL) for individuals diagnosed with PID. Methods: 34 participants were included in this eight-week, mixed-methods, randomized controlled trial, either as part of the control group, or as part of the exercise intervention group. Participants completed pre- and post-study outcome measures, reflective journaling, and a post-study interview. Results: There were no statistically significant differences between the groups for the outcome measures, infection incidence, or need for non-routine medical care. There was a clinically significant decline in the Physical Component Summary score of the SF-36v2 for the control group at the end of the study. The scores for the SF-36v2, for all participants, were below normative scores for all domains, at the beginning and end of the study. Four main themes emerged from the qualitative interviews: living with a ‘new normal’, the challenges of living with a chronic disease, facing the stigma of a chronic disease, and wanting to exercise, but were too exhausted to do so. Conclusions: Individuals with a diagnosis of PID have lower QoL scores as compared to population norms. They face high levels of stress, overwhelming fatigue, social isolation, and decreased emotional well-being. Exercise programs for this patient population did not result in increased infections or need for non-routine medical care but did result in emotional implications that need to be considered. Healthcare providers need to address emotional well-being and provide coping strategies. Exercise programs should be designed with a slow, methodical ramp-up to avoid increasing fatigue or stress, while exercise goals must be highly achievable and realistic. Physical therapists should collaborate with other healthcare professionals for a more holistic and interprofessional approach to working with patients with a diagnosis of PID.

Background: There are over 300 Primary Immunodeficiency diseases (PID) that are a result of a genetic or idiopathic dysfunction of any aspect of the immune system. These conditions result in a higher frequency of infections, autoimmune conditions, or malignancies. Moderate intensity exercise is thought to help the immune system, while high intensity exercise may have a negative impact on immune function. The impact of exercise on individuals with an impaired immune system due to PID is not yet understood. Purpose: The purpose of this study was to investigate whether a low to moderate intensity exercise program would have an effect on stress, fatigue, and quality of life (QoL) for individuals diagnosed with PID. Methods: 34 participants were included in this eight-week, mixed-methods, randomized controlled trial, either as part of the control group, or as part of the exercise intervention group. Participants completed pre- and post-study outcome measures, reflective journaling, and a post-study interview. Results: There were no statistically significant differences between the groups for the outcome measures, infection incidence, or need for non-routine medical care. There was a clinically significant decline in the Physical Component Summary score of the SF-36v2 for the control group at the end of the study. The scores for the SF-36v2, for all participants, were below normative scores for all domains, at the beginning and end of the study. Four main themes emerged from the qualitative interviews: living with a ‘new normal’, the challenges of living with a chronic disease, facing the stigma of a chronic disease, and wanting to exercise, but were too exhausted to do so. Conclusions: Individuals with a diagnosis of PID have lower QoL scores as compared to population norms. They face high levels of stress, overwhelming fatigue, social isolation, and decreased emotional well-being. Exercise programs for this patient population did not result in increased infections or need for non-routine medical care but did result in emotional implications that need to be considered. Healthcare providers need to address emotional well-being and provide coping strategies. Exercise programs should be designed with a slow, methodical ramp-up to avoid increasing fatigue or stress, while exercise goals must be highly achievable and realistic. Physical therapists should collaborate with other healthcare professionals for a more holistic and interprofessional approach to working with patients with a diagnosis of PID.

京都大学 / 0048 / 新制・課程博士 / 博士(人間健康科学) / 甲第21306号 / 人健博第62号 / 新制||人健||5(附属図書館) / 京都大学大学院医学研究科人間健康科学系専攻 / (主査)教授 黒木 裕士, 教授 恒藤 暁, 教授 坂井 義治 / 学位規則第4条第1項該当 / Doctor of Human Health Sciences / Kyoto University / DFAM

No description available.

The aim of this study is to bridge the gap between two emotions, guilt, and shame, and their interplay with perceived physical, psychological, social, and emotional well-being among healthy adults. Hence, we set out to examine how guilt and shame relate to health-related quality of life. To reach this conclusion, the study examines 5 hypotheses based on gender, culture, and the general population. In addition, the study explores coping strategies some may employ. The study sample population was drawn from South Africa and Europe (n = 85, average age = 33 years, 60% women, 38.8% men, and 1.2% other). An online survey based on the validated GSQ-8 and SF-36v questionnaires was used to collect the data. Results of the study have concluded that there is a negative relationship between HRQOL and guilt and shame and that guilt and shame have a negative relationship with Health-related quality of life, indicating that individuals who experience a great deal of guilt or shame will suffer from a reduction in quality of life, and vice versa. Therefore, Guilt and Shame appear to have a positive correlation with HRQOL subscales. Shame and Guilt scores did not differ significantly by gender. It is imperative that future research studies include a broader sample and a more comprehensive analysis of causal factors. Feelings of guilt and shame can be powerful motivators, but when they can become a silent burden that weighs us down, leading to decreased quality of life and a range of negative health outcomes. / Syftet med denna studie är att överbrygga klyftan mellan två känslor, skuld och skam, och deras samspel med upplevd fysisk, psykologisk, social och emotionell välbefinnande bland friska vuxna. Därför bestämde vi oss för att undersöka hur skuld och skam relaterar till hälsorelaterad livskvalitet. För att nå denna slutsats undersöker studien 5 hypoteser baserade på kön, kultur och den allmänna befolkningen. Dessutom undersöker studien hanteringsstrategier som vissa kan använda. Studieprovpopulationen drogs från Sydafrika och Väst- och Sydeuropa (n = 85, medelålder = 33 år, 60% kvinnor, 38.8% män och 1.2% andra). En online-undersökning baserad på de validerade GSQ-8- och SF-36v-frågeformulären användes för att samla in data. Resultaten av studien har dragit slutsatsen att det finns ett negativt samband mellan HRQOL och skuld och skam och att skuld och skam har ett negativt samband med hälsorelaterad livskvalitet, vilket indikerar att individer som upplever mycket skuld eller skam kommer att drabbas av en minskning av livskvaliteten och vice versa. Därför verkar skuld och skam ha en positiv korrelation med HRQOL-delskalor. Skam- och skuldpoäng skilde sig inte signifikant efter kön. Det är absolut nödvändigt att framtida forskningsstudier inkluderar ett bredare urval och en mer omfattande analys av orsaksfaktorer. Känslor av skuld och skam kan vara kraftfulla motivatorer, men när de kan bli en tyst börda som tynger oss, vilket leder till minskad livskvalitet och en rad negativa hälsoutfall.

Objective  Paper I: Most screening and opportunistically detected abdominal aortic aneurysms (AAA) are small and kept under surveillance for several years before preventive surgery. Living with the diagnosis of an AAA may have an influence on the patient’s life. The aim was to review systematically review the current knowledge of the effect on health related quality of life (HRQoL) and patients’ experiences of living with an AAA while under surveillance. Paper II: To investigate HRQoL and comorbidity in men with screening detected AAA, Sub-Aneurysmal aorta (SAA) and Controls at baseline screening and after long-term follow-up. Methods  Paper I: A systematic literature review of quantitative and qualitative studies, which were quality assessed according to the GRADE system, was carried out. PubMed, Cochrane, Embase, CINAHL, PsycINFO, and MEDLINE were searched. Narrative synthesis and meta-analysis were performed and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. Paper II: Between 2006 and 2015, 16 689 sixty-five-year old men participated in the aortic screening program in the county of Uppsala in Sweden. All 539 men diagnosed with an SAA or AAA were invited to participate in the study UpAAA and 324 accepted. Baseline questionnaires was distributed after screening, and at 5-year follow-up. For each year a control group of approx. 50 men, participating in the screening program with normal aorta, were included.  Results Paper I: Synthesis and meta-analyses of studies based on the Short Form-36 demonstrated that patients with an AAA consistently rated their general health lower than controls and conveyed no significant negative impact for patients with an AAA when assessed at follow up and compared with pre-screening. Analysis of HRQoL estimates of mental health, anxiety, and depression demonstrated no significant differences for patients with AAA compared with controls, or within the AAA group. Qualitative studies revealed that patients with an AAA felt safe being under surveillance and receiving a diagnosis of AAA set thoughts and feelings in motion regarding health, ageing, and mortality. Patients’ lack of knowledge about the disease, its progression, and future planning can cause insecurity and worries. Paper II: AAA and SAA group both has impairment in the physical dimensions of HRQOL and a higher prevalence of co-morbidity at baseline, compared to controls. At 5-year follow-up, the similarities between AAA and SAA group remained with no difference in HRQOL but a higher prevalence of CVD, hypertension and diabetes in men with AAA. Compared with controls both AAA and SAA had significantly higher impairment in HRQoL, and prevalence of co-morbidity and the AAA group was most affected.

Background: Feeding and swallowing difficulties (FSD) are found in typically developing children and children with complex medical and developmental conditions. These difficulties may have negative health consequences which can be stressful for caregivers as they are required to provide care for their children in the home environment. The Feeding and Swallowing Impact Survey (FS-IS) is a subjective rating scale used to determine the health-related quality of life (HRQoL) of caregivers of children diagnosed with FSD. However, this scale is not yet available in any of the official South African languages (except for English), and has not yet been culturally or linguistically adapted for the South African context. Research aims: The study aimed to cross culturally adapt and validate the FS-IS for the South African context by 1) describing the content validity of the FS-IS in a South African context; 2) describing the cultural and linguistic appropriateness of the English, isiXhosa and Afrikaans versions of the FS-IS; and 3) describing the experiences caregivers of children have in caring for their child with FSD using the FS-IS, in a pilot study. Methodology: A descriptive exploratory design was used to cross-culturally adapt and pilot the FS-IS, which consists of 3 subsections related to daily activities, worrying and problems with feeding. Five expert speech-language therapist (SLT) participants were identified to review the FS-IS for content validity. The FS-IS was then translated into Afrikaans and isiXhosa using the forward and back translation process. Caregivers (n=15) were identified at feeding clinics to determine the cultural and linguistic appropriateness of the FS-IS in English (n=5), Afrikaans (n=5) and isiXhosa (n=5). Their recommendations were taken into consideration and changes made. The pilot study included caregivers of children with FSD attending feeding clinics at two institutions (n=32) who completed the FS-IS. The participants in the pilot study included parents as primary caregivers (n=28; 88%), grandparents (n=2; 6%), as well as foster parents (n=2; 6%). Thirty-one participants were female with 14 English speaking, 9 isiXhosa and 9 Afrikaans speaking. The caregivers were the primary caregivers of children with a variety of FSD including non-oral feeds, oral feeds with specific modifications and picky or selective eaters. Results: The FS-IS was found to have content validity as experts and caregiver participants judged it to be contextually relevant for the South African context. Caregivers considered the items on the FSIS important, clear and appropriate for speakers of their native language as well as for fellow South African families, with minor changes suggested for the isiXhosa translated version. The tool has high internal consistency (Cronbach's alpha = 0.827) as well as excellent intra and inter-rater reliability (100% agreement). Daily activities that caregiver participants found most difficult included getting help from others (50%, n=16) and leaving their child in the care of others as they are scared to have others feed or take care of their child (62.5%, n=19). The majority of caregiver participants reported concerns related to their child's general health (84%, n=27) and whether they were doing enough to help with their child's FSD (50%, n=16). Few caregivers reported difficulties with feeding, with 87.5% (n=28) reporting no difficulties as a result of the time taken to prepare meals and 72% (n=23) reported no difficulty due to professionals or family having differing opinions about how to feed their child with FSD. Conclusion: The results confirm that the FS-IS is a reliable and valid tool for the identification of caregivers with reduced HRQoL related to caring for their child with FSD in a South African context. The adapted and translated FS-IS can therefore be used to identify caregivers who may need additional support or referral for further management from the multidisciplinary team. The results highlighted the complexity of caring for a child with FSD and the effects of the burden of care on caregivers. Early identification of the HRQoL of caregivers will not only benefit the caregivers but also the child they are caring for as the HRQoL of caregivers impacts on the QoL of the child with FSD.

No description available.

Background: There is a lack of the generic data comparing the influence of different diseases on health-related quality of life (HrQoL) in a representative sample of primary care patients. Methods: Patient data were collected in the DETECT (Diabetes Cardiovascular Risk Evaluation: Targets and Essential Data for Commitment of Treatment) study including 55,000 patients. Results: 3,109 patients (33.3% female) with myocardial infarction (MI), stroke or both were compared to patients with a wide range of other diagnoses. Stroke and MI patients revealed a lower HrQoL as compared to patients with other diagnoses. Stroke was associated with strongest quality of life reduction. Multivariate analysis revealed several different determining factors. Conclusions: The reduction of HrQoL of patients with MI and stroke is primarily determined by the CNS insult. These data provide further evidence that early diagnosis and treatment of cardiovascular risk factors is essential to reduce subsequent stroke.