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Abstract The Act on the Status and Rights of patients (1993) enabled a change in the patient’s status from being a passive object of medical treatment to being an active and equal subject with a right of self-determination. According to the Act a patient has a right to show his dissatisfaction with the received care and treatment with a complaint. The aim of the first part of the study was to clarify the workings of patient feedback and complaint systems as well as the position of the health care professionals with whom patients had been dissatisfied with. The data was collected with a questionnaire from people in superior positions within the medical and nursing professions (n = 110). The aim for the second and third parts of this study was to find out about patients’ dissatisfaction with the medical care, nursing or treatment they received from a health care professional. Data for the second part of the study was collected from readers’ letters in newspapers during 2012 (n = 127), while the data for the third part was gathered from patients’ complaints during 1993-2012 (n = 956). The data for parts were analyzed by means of inductive content analysis. The results from the questionnaire show that a complaint is a negative thing. Sorting out of the facts concerning the matter and answering the complaint are felt to be slow and complicated. Patient feedback is seen as a more natural alternative to a complaint from the viewpoints of the patient, the health care professional and the working community. Dissatisfaction expressed by a patient is also a defeat for a health care professional. There is a lot of dissatisfaction with care and treatment in the readers’ letters concerning health care. To a great extent, it deals with access to health care, with the abilities of health care professionals and with general treatment. The amount of complaints increased significantly between years 1993–2012. However, the amount was small when compared to the number of patients then in health care. The complaints were mostly made by patients themselves. The main sources for dissatisfaction with health care are gaining access to health care, the professional abilities of health care staff as well as guidance and getting advice. Dissatisfaction with treatment is expressed as experiences of having been dominated or subjected to mental violence. Dissatisfaction with the health care organization is rare in all parts of the study. The experienced care is more significant than the environment. The content of complaints has not been studied before. The knowledge gained by this study can be utilized when developing the statutes on the complaints and feedback systems. The study also gives new insight into developing patient encounters as well as nursing and well-being at work. / Tiivistelmä Potilaslaki (1993) mahdollisti, että potilaan asema muuttui passiivisesta hoidon kohteena olevasta objektista aktiiviseksi ja tasa-arvoiseksi toimijaksi. Potilaslain mukaan potilaalla on oikeus osoittaa tyytymättömyytensä saamansa hoitoon ja kohteluun muistutuksen avulla. Ensimmäisen osastutkimuksen tarkoituksena oli selvittää potilaspalaute- ja muistutusjärjestelmiä sekä potilaan tyytymättömyyden kohteeksi joutuneen terveydenhuollon ammattihenkilökunnan asemaa. Aineisto kerättiin kyselyllä hoitotyön ja lääketieteen esimiehiltä (n = 110). Toisen ja kolmannen osatutkimuksen tarkoituksena oli selvittää potilaan kokemaa tyytymättömyyttä terveydenhuollon ammattihenkilön harjoittamaan terveyden- ja sairaanhoitoon tai siihen liittyvään kohteluun. Toisen osatutkimuksen aineisto kerättiin yleisönosaston mielipidekirjoituksista vuoden 2012 ajalta (n = 127) ja kolmannen osatutkimuksen aineisto muistutuksista vuosilta 1993–2012 (n = 956). Osatutkimusten aineistot analysoitiin induktiivisella sisällönanalyysillä. Kyselyn tulosten mukaan muistutus on luonteeltaan kielteinen. Siihen liittyvien asioiden selvittely ja vastauksen laadinta koetaan hitaaksi ja monimutkaiseksi. Potilaspalautetta pidetään potilaan, työntekijän ja työyhteisön kannalta muistutusta luontevampana vaihtoehtona. Potilaan ilmaisema tyytymättömyys on tappio myös terveydenhuollon ammattihenkilölle. Terveydenhuoltoa koskevissa mielipidekirjoituksissa esiintyy paljon tyytymättömyyttä hoitoon ja kohteluun. Se kohdistuu suurelta osin hoitoon pääsyyn liittyviin asioihin sekä henkilökunnan osaamiseen ja kohteluun. Muistutusten määrä kasvoi vuosina 1993–2012 merkittävästi. Silti niiden määrä on vähäinen verrattuna hoidossa olleiden potilaiden määrään. Muistutukset olivat enimmäkseen potilaiden itsensä tekemiä. Hoitoon liittyvää tyytymättömyyttä aiheuttavat erityisesti hoitoon pääsyyn, henkilökunnan osaamiseen sekä ohjaukseen ja neuvontaan liittyvät asiat. Kohteluun liittyvä tyytymättömyys ilmenee kokemuksena alistamisesta ja henkisestä väkivallasta. Organisaatioon liittyvä tyytymättömyys on kaikissa osatutkimuksissa vähäistä. Koettu huolenpito on ympäristöä merkityksellisempi. Muistutusten sisältöä ei ole aikaisemmin tutkittu. Tutkimusta voidaan hyödyntää muistutuksiin liittyvien säädöksien ja palautejärjestelmien kehittämisessä. Tutkimus antaa uutta tietoa myös potilaan kohtaamiseen sekä hoitotyön ja työhyvinvoinnin kehittämiseen.

Background: Nonresponsiveness to therapy is generally acknowledged, but only a few studies have tested switching to psychotherapy. This study is one of the first to examine the malleability of treatment-resistant patients using acceptance and commitment therapy (ACT). Methods: This was a randomized controlled trial that included 43 patients diagnosed with primary panic disorder and/or agoraphobia (PD/A) with prior unsuccessful state-of-the-art treatment (mean number of previous sessions = 42.2). Patients were treated with an ACT manual administered by novice therapists and followed up for 6 months. They were randomized to immediate treatment (n = 33) or a 4-week waiting list (n = 10) with delayed treatment (n = 8). Treatment consisted of eight sessions, implemented twice weekly over 4 weeks. Primary outcomes were measured with the Panic and Agoraphobia Scale (PAS), the Clinical Global Impression (CGI), and the Mobility Inventory (MI). Results: At post-treatment, patients who received ACT reported significantly more improvements on the PAS and CGI (d = 0.72 and 0.89, respectively) than those who were on the waiting list, while improvement on the MI (d = 0.50) was nearly significant. Secondary outcomes were consistent with ACT theory. Follow-up assessments indicated a stable and continued improvement after treatment. The dropout rate was low (9%). Conclusions: Despite a clinically challenging sample and brief treatment administered by novice therapists, patients who received ACT reported significantly greater changes in functioning and symptomatology than those on the waiting list, with medium-to-large effect sizes that were maintained for at least 6 months. These proof-ofprinciple data suggest that ACT is a viable treatment option for treatment-resistant PD/A patients. Further work on switching to psychotherapy for nonresponders is clearly needed.

Introduction This thesis describes a research study designed to examine the consequences of disability arising out of spinal cord compression secondary to cancer, and to examine the rehabilitation services available to patients. Research aims and questions The study was intended to achieve the following: 1. To ascertain what might constitute effective rehabilitation interventions for patients with metastatic spinal cord compression. 2. To identify the conditions in which these intervention might be delivered. 3. To ground proposals in spinal cord compression patients’ experience of disability. The following research questions were posed: 1. What are the consequences of disability for patients with metastatic spinal cord compression? 2. What strategies do patients themselves use to manage disability? 3. What do health care staff, particularly rehabilitation professionals, understand to be the consequences of disability for this patient group, and correspondingly, what are their views on the significance and provision of rehabilitation? 4. To what extent is rehabilitation being provided to these patients, and with what effect? 5. Where rehabilitation is not being provided, why is this the case? Study design The study had two components: • A series of nine in-depth interview-based case studies, which involved talking to patients about their experiences of living with spinal cord compression, as well as gaining the perspectives of family members and the health professionals who provided care and services. • A retrospective audit of the medical records of 73 spinal cord compression patients admitted to a radiotherapy in-patient unit (the Frank Ellis Unit at the Churchill Hospital in Oxford) over a two year period (July 2003 – June 2005), identifying disability-related problems and the measures taken to address them. This was a Phase I modelling study in terms of the Medical Research Council’s framework for evaluating complex interventions, with Pawson and Tilley’s (1997) Context-Mechanism-Outcome configuration adopted as a conceptual basis for data collection. Within-case analysis was informed by George and Bennett’s (2004) account of process tracing, and between-case analysis was modelled on the constant comparative method of Glaser and Strauss (1967) with an analysis of narrative as a variation on that theme. Results Disability is a serious problem for patients with spinal cord compression, but it is one problem among many others, not the least of which are the physical and emotional consequences of life-threatening illness. In response to disability, patients ‘twin-track’ their attitudes to it, acknowledging but also resisting the idea of themselves as disabled, and adopting a series of psychological devices to manage the tension. In effect, patients recognise that something significant has changed and that, as a consequence, new self-management skills must be learned, functional boundaries must be explored, useful information must be sought. At the same time, they display a determination to hold on to an established identity, associated with a sense of normality. This identity embraces the idea of competence and resourcefulness, the events, activities and pleasures that one looks forward to, and the wish to avoid burdening others. It is not a ‘disabled’ identity. To some extent, these two attitudes are in tension, as one acknowledges disability while the other, implicitly or explicitly, resists it. Consequently, patients try to find ways of resolving this tension, by ‘revising downwards’ their expectations, by constantly deferring the anticipated pleasures, and by avoiding situations in which their abilities might be put to the test, or the sense of normality be disconfirmed. Health care professionals are likely to construe the patient’s response as indicative of a certain type of character – ‘realistic’ on one hand, and ‘unrealistic’ on the other. They do not see ‘acknowledging / not acknowledging’ as twin facets of a complex response to circumstances, or as something which every patient engages in to one degree or another. Patients are motivated not to recognise rehabilitation as something they need, a view which is confirmed by the cursory form of rehabilitation experienced in hospital, and by the marginal significance attributed to it by nursing and medical staff. On discharge, hospital staff assume that rehabilitation needs will be identified in the community, although the way in which community rehabilitation services are organised virtually guarantees that this will not happen, unless a specific referral is made (as it is in only 5% of cases). The patient, meanwhile, remains unaware of the potential value of rehabilitation, and has no incentive to request rehabilitation if no-one offers it. They are consequently unprepared for life post-discharge, and assume that they (and their families) must manage on their own. Conclusions Like the patients, health care professionals may have to ‘twin-track’ if they are to provide rehabilitation in a way that is acceptable to patients with metastatic spinal cord compression. Instead of categorising patients as ‘realistic’ or ‘unrealistic’, they should work towards sustaining patients’ ‘positive illusions’, while at the same time taking whatever opportunities arise to enhance the patient’s day-to-day ability to function in a ‘safe’ space. This entails revising some deeply entrenched ideas about working with patients who have a disability: patient-centredness, the importance of goal setting, and the need for adjustment.

MSc (Microbiology) / Department of Microbiology / Background: Antiretroviral treatment (ART) has grown to be one of the most effective tool in the fight to control HIV/AIDS morbidity and mortality worldwide. However, due to the emergence of drug resistant HIV, ART efficacy can be jeopardized. Drug resistant HIV strain has a potential of becoming a major public threat, as its limit treatment options on people living with HIV. With several findings worldwide reporting drug resistant HIV to be currently being transmitted to ART-naïve persons, measures have been taken to genotype drug resistant HIV prior to treatment initiation. However, in resource limited countries such measures are not executed especially in public sectors due to the costs associated with the required assays for genotyping. Objective: The objectives of the study was to establish a deep sequencing protocol (Next Generation Sequencing-NGS) using an Illumina MiniSeq Platform and subsequently apply it to genotype HIV in chronically infected drug naïve persons for resistance mutations and viral genotypes Methods: HIV positive Individuals without any exposure to ART (Treatment-naive) were recruited. Partial pol fragment (complete protease and ~1104bp reverse transcriptase) were amplified and purified. Libraries were prepared using Nextera XT library preparation kit, fragmented, tagmented, pooled and denatured then sequenced with Illumina MiniSeq instrument. Consensus sequences were derived, aligned and phylogenetically analysed. The Stanford HIV Drug Resistance Algorithm was used to infer the presence of drug resistant mutants, at the viral minority and majority population levels. Results and discussion: An NGS protocol to generate nucleotide sequences for drug resistance inference was established. No major drug resistance mutations were detected against protease, reverse transcriptase inhibitors in the study subjects investigated. Nevertheless, V179D change was observed in one patient (8.3%). V179D has been shown to impact a low-level resistance to NNRTI. On the other hand, several secondary and unusual mutations at known drug sites were detected even at minority threshold level of <20%. Conclusion: No major drug resistance mutations was detected in the drug naïve study population. This finding suggests that there is no risk of treatment failure to the investigated subjects, however it is important to assess the potential phenotypic v | P a g e significance of the identified secondary resistance mutations in the context of HIV-1 subtype C. The established NGS protocol should be applied in subsequent HIV drug resistance studies. / NRF