Master of Science / Haematopoietic stem cell transplantation (HSCT) is a complicated and high-risk procedure used to cure disease or stop the spread of disease in a range of cancers. HSCT carries a high incidence of mortality and is associated with distressing short and long-term side effects. In addition, patients remain at risk of recurrence or mortality years after transplantation. Therefore, patients undergoing HSCT have been found to experience significant emotional and psychosocial distress because of the trauma associated with treatment. The literature suggests that about 50% of HSCT patients will experience clinical levels of distress. Carers and family members play an important role in caring for these ill patients in the short and long-term. Major role changes and financial stressors are experienced in many families, adding to the burden of care. However, very little is known about the rates of psychopathology in carers of HSCT patients. Due to the arduous nature of HSCT, psycho-educational programmes have been developed by major transplant centres and hospitals in order to provide HSCT patients and their families with information on the treatment process, side effects, risks, and long-term outcomes. Research on patient education in oncology has shown that providing patients and carers with information about their illness and treatment reduces anxiety and distress. To date, there have been no empirical evaluations to support the use of education programmes for HSCT patients. While it could be assumed that information would be helpful in reducing anxiety and depression in HSCT as it is in oncology generally, the information provided to these patients is usually more confronting and therefore, may be less reassuring. Thus, it is not known whether providing patients with education about HSCT reduces patient and carer distress or whether it might actually increase adverse outcomes. The aim of the present study was to evaluate the rates and correlates of distress in carers and patients and examine the effect of a psychoeducation programme for patients undergoing HSCT and their carers on knowledge, distress, information satisfaction, social support and caregiver burden. A randomised control trial was conducted to provide empirical data in relation to the latter aim. The following hypotheses were proposed. Firstly, it was hypothesised that patients and carers who received the education programme would have higher levels of knowledge, not evidenced in a group waiting to receive the programme. Secondly, it was hypothesised that the education program would not lead to increased anxiety and depressive symptoms. Thirdly, patients who know more about their condition would be the least distressed. As predicted, this study found high levels of distress, particularly in carers. Higher patient distress was related to having more concern about one’s illness and experiencing more symptoms. Education was effective in increasing patient and carer knowledge. Importantly there were no adverse effects of knowledge and greater patient knowledge following the education program was associated with less distress, although there was no direct effect of education on distress. Future research should aim to identify what aspects of the education program are helpful to patients. Finally, support interventions such as CBT are needed to help patients and carers, in particular, cope with the high levels of distress inherent in the HSCT experience.

<p><strong>Bakgrund:</strong> Allt fler personer som haft stroke vårdas i hemmet med stöd från sin familj. Anhörigvårdare upplever att de ”kastas in” i rollen som vårdare och är dåligt förberedda och informerade om den nya situationen. <strong>Syfte:</strong> Syftet var att beskriva anhörigvårdares behov av utbildning och information vid vård av en familjemedlem med stroke. <strong>Metod:</strong> En allmän litteraturöversikt genomfördes och baserades på 16 vetenskapliga artiklar. <strong>Resultat: </strong>Anhörigvårdare hade behov av utbildning och information om sjukdomen stroke, dess orsak, riskfaktorer och behandling samt utbildning i basal omvårdnad för att kunna vårda sina anhöriga i hemmet. Dessutom behövde de utbildning och information om stöd och service från samhället bland annat om hur de kunde bli avlastade i sin vårdarroll. De behövde även information om tillgänglig vårdkoordinator/kontaktsjuksköterska och anhörig/patientförening att vända sig till för information och stöd. <strong>Slutsats:</strong> Anhöriga behöver involveras mer i vården och därmed ses som en samarbetspartner. Med hjälp av familjesamtal kan distriktssköterskan ta reda på familjens individuella behov av utbildning och information. Författarna föreslår ett utbildnings/informationsprogram för anhöriga för att på så vis undvika att de upplever att de ”kastas in” i vårdarrollen.</p>

Bakgrund: Allt fler personer som haft stroke vårdas i hemmet med stöd från sin familj. Anhörigvårdare upplever att de ”kastas in” i rollen som vårdare och är dåligt förberedda och informerade om den nya situationen. Syfte: Syftet var att beskriva anhörigvårdares behov av utbildning och information vid vård av en familjemedlem med stroke. Metod: En allmän litteraturöversikt genomfördes och baserades på 16 vetenskapliga artiklar. Resultat: Anhörigvårdare hade behov av utbildning och information om sjukdomen stroke, dess orsak, riskfaktorer och behandling samt utbildning i basal omvårdnad för att kunna vårda sina anhöriga i hemmet. Dessutom behövde de utbildning och information om stöd och service från samhället bland annat om hur de kunde bli avlastade i sin vårdarroll. De behövde även information om tillgänglig vårdkoordinator/kontaktsjuksköterska och anhörig/patientförening att vända sig till för information och stöd. Slutsats: Anhöriga behöver involveras mer i vården och därmed ses som en samarbetspartner. Med hjälp av familjesamtal kan distriktssköterskan ta reda på familjens individuella behov av utbildning och information. Författarna föreslår ett utbildnings/informationsprogram för anhöriga för att på så vis undvika att de upplever att de ”kastas in” i vårdarrollen.

Idag ökar den palliativa omvårdnaden i hemmet. För att den sjuke ofta har en önskan om att få dö hemma. Det ställer krav på anhörigvårdarna som är dem som kommer att bli dem primära vårdarna. Syftet med studien var att undersöka anhörigvårdarnas upplevelser av att vårda hemma, i livets slutskede, med hjälp av det palliativa teamet. Studien genomfördes som en systematisk litteraturstudie. Genom litteraturstudien fick man fram de positiva och negativa upplevelserna från anhörigvårdarna som vårdat den sjuke i hemmet. Studien visade att anhörigvårdarna skulle välja att vårda den sjuke i hemmet igen med hjälp av det palliativa teamet. Detta trots att flera negativa upplevelser kom fram. Anhörigvårdarna ville vara mer delaktiga i omvårdnadsarbetet och detta gjorde att anhörigvårdarna upplevde en större tillfredställelse av själv, genom att kunna ge något tillbaka till den sjuke. Anhörigvårdarna önskade mer stöd från vårdpersonalen eftersom de ansåg sig ha bristande kompetens om medicinteknik, kroppens hälsa, sjukdomen, dess symptom, behandling, och prognos etc.

Šiame darbe analizuojama valstybės tarnautojų karjeros valdymo problemas. Svarbiausias organizacijos elementas yra darbuotojai. Kad organizacija apsirūpintų reikiamu reikiamos kokybės personalo skaičiumi, ji turi užtikrinti rezervo formavimą ir karjeros planavimą. Lietuvos įmonėse karjeros planavimas nėra vykdomas. Apsvarsčius realius karjeros realizavimo variantus padariau išvadą, kad karjeros planavimas turi apimti visus darbuotojus ir pirmiausia to turi siekti pats žmogus. Kiekviena įmonė, norėdama organizuoti sistemingą karjeros planavimą, turi sukurti atitinkamą individualios karjeros planavimo ir realizavimo sistemą. / The development of state service office worker’s position as well as working places at the enterprise is analyzed in this essay. The employee is the most significant element at the enterprise. In order the enterprise employs necessary adequate number of quality staff it should guarantee the formation of reserve as well as career planning. Yet career planning is not implemented in Lithuania. Having analyzed real versions of career realization I came to the conclusion, that career planning should enclose all the employees as well as it should be aimed at by a person himself. Every enterprise aiming at organization of methodical career planning has to form adequate system of planning and implementing of individual career.

The academic underachievement of looked after children is well known. By involving foster carers in a Paired Reading intervention a Swedish project tried to address this issue, replicating a successful British trial. The aim of my thesis was to study the variations in the foster carers’ experiences of this literacy intervention. Reading reports from 100 children were collected and qualitative interviews with 15 foster parents were analyzed using concepts from motivational psychology. The results revealed that although some had reported difficulties a majority of the participants had implemented the program in an acceptable way. Many carers had noticed improvements in the child’s reading ability and some reported improved relations, but in a few cases rigidly following the method had led to conflicts. The interviews showed that the completion of the literacy training was conditioned on the children’s pleasure/joy in reading which in turn may require adjustments in the day-to-day delivery of the intervention. Also carers had to see a purpose with Paired Reading in order to be able to arouse enthusiasm in the child. The results suggest that it is possible to engage foster parents in the improvement of foster children’s literacy skills.

Background: Multivariate analyses of quality of life (QoL) in dementia are relatively rare. This study was the first aiming to measure QoL of persons with dementia and their informal caregivers in New Zealand. To date, it is also the only study examining what interventions from primary and secondary care in New Zealand are helpful for enhancing QoL and what these interventions cost. Methods: In this prospective cohort study, questionnaires (including the Quality of Life-Alzheimer’s Disease Scale and the Neuropsychiatric Inventory) investigating various QoL-domains were administered to 53 outpatients of a memory clinic recently diagnosed with dementia, and their caregivers at baseline and 12-month follow-up. Time and resource utilisation were assessed in order to identify direct and indirect costs using questionnaires and diaries (over 12 months). Results: Cognition scores of persons with dementia (PWDs) ranged from 49 to 91 on the Modified-Mini-Mental State Examination (3MS); scores on the Clinical Dementia Rating Scale (CDR) ranged from 0.5 to 3, with 83% of PWDs being in the early stages of the illness at baseline (CDR ≤ 1). Most PWD measurements confirmed the predicted correlations including a strong link between PWDs’ and caregivers’ QoL. Many correlations remained stable over 12 months. Combined information and support interventions achieved significantly better PWD and caregiver QoL than single interventions. Direct costs (including costs of informal caregiving time) increased with an increase in dementia severity, neuropsychiatric and behavioural symptoms and functional limitations. There was a clear trend that caregivers were more distressed if patients received less in-home support. Direct non-medical costs of PWDs living at home did not increase with the severity of PWDs’ cognitive impairment. In 2008/09, there were an estimated 1,896 persons in Canterbury providing a total of 5.47 million hours of care for PWDs. This unpaid care had a value of NZ $135.8 million. Caregivers were much more likely to be depressed if they had a low income. More than one-third of family-caregivers (39.5%) thought that financial compensation for their time spent caring would enable them to look after the PWD at home for longer. Conclusions: A mix of different clinical and non-clinical (including economic) factors can predict QoL in dementia. The strong link between PWDs’ and caregivers’ QoL calls for a systemic approach in dementia care. QoL can be sustained over 1 year in a cohort of mainly early dementia patients and their informal caregivers. Developing psychosocial and financial incentives could be a key factor to support PWDs and their informal caregivers in New Zealand, consequently enabling them to live in the community for longer. These outcomes also have implications for health professionals and social policy makers which must be addressed as health practitioners and the wider community strive both for best practice and for cost-effective care of our increasingly ageing population.

Background: People are living longer with chronic life-limiting illnesses such as cancer. Much is expected of lay cancer carers with the shift of complex non-acute care to the community and the pressures this can place on family relationships. The lay caregiving role does not appeal to all, yet willingness to care is often expected by others including health professionals. Carers who feel reluctant but committed to the role may experience adverse consequences. Reluctance to care is under-investigated, particularly in the cancer context, and its indicators may include a poor carer-patient relationship, perceived lack of choice and lifestyle disruption. Existing theories of caregiving do not adequately explain reluctance to care, and the concept remains under-developed. The assumptions underpinning this study are that: some cancer carers are reluctant to care, some carers may be reluctant toward specific aspects of the caregiving role or at different times during the cancer trajectory, and some reluctant carers will not want to reveal or discuss their unwillingness. Aim: The aim of the study was to gain a clearer understanding of lay carers’ reluctance to care for patients with recurrent cancer. Methods: A mixed methods design was used. In Phase I, data provided by a consecutive sample of carers (N = 98) of cancer patients corresponding to the patients’ final year were analysed to explore the context in which reluctance to care might exist or develop, and focusing on differences by spousal relationship and by gender in anxiety and depression, awareness of the stage of cancer, perceived social support, and perceived burden. In Phase II, a purposive sample of carers of patients with recurrent cancer (N = 16) were interviewed in-depth, using open-ended questions to generate qualitative data regarding their perceptions and experiences of caregiving and reluctance to care. Complementary data were obtained from a purposive sample of health professionals who interact with cancer carers (N = 13). The interview transcripts were analysed qualitatively to identify patterns and themes which would provide insights into the dimensions of reluctance to care. Results: In Phase I, spouses perceived greater family support but caregiving had a greater negative impact on their daily activities and social interaction. Non-spouses were more anxious than spouses, but reported greater social support, and less negative impact on their finances, daily schedule and health. Female carers were more anxious and depressed than males, who reported less burden and greater social support. Awareness of the stage of cancer was positively but weakly correlated with anxiety and depression. In Phase II, reluctance to care was experienced by both spouses and non-spouses and was not gender specific. Carers and health professionals held diverging perceptions and expectations of the lay caregiving role. Caregiving was an obligatory but invisible role and for some carers it led to exhaustion due to a lack of role boundaries. Carers were faced with forced choices. The lay caregiving role seemed to come as a non-negotiable package of expectations which gave carers the autonomy to accept their role rather than the choice to refuse it. Contextual factors which seem conducive to reluctance were overshadowed by carers’ commitment to the role, which suggests that their preferences were a lower priority despite the personal cost. There was indirect evidence of reluctance in others: family members distanced themselves from the caregiving situation, and health professionals were distanced from carers by their patient-centredness. Conclusions: This study has identified three fundamental dimensions of reluctance to care: the invisibility of the caregiving role, its lack of boundaries and its forced choices. Caregiving is often a sacrificial rather than reciprocal role, but reluctance is seen as an abnormal rather than realistic response to abnormal role expectations. The findings were limited by the extent to which carers disclosed reluctance and the extent to which reluctant carers remained in the role. As a result, reluctance to care may have been underestimated. Measuring this latent and taboo topic is likely to remain a challenge as the concept of reluctance to care continues to evolve. This study has established the importance of ongoing work on a topic which cannot remain hidden as the need for lay cancer care continues to expand.

Master of Science / Haematopoietic stem cell transplantation (HSCT) is a complicated and high-risk procedure used to cure disease or stop the spread of disease in a range of cancers. HSCT carries a high incidence of mortality and is associated with distressing short and long-term side effects. In addition, patients remain at risk of recurrence or mortality years after transplantation. Therefore, patients undergoing HSCT have been found to experience significant emotional and psychosocial distress because of the trauma associated with treatment. The literature suggests that about 50% of HSCT patients will experience clinical levels of distress. Carers and family members play an important role in caring for these ill patients in the short and long-term. Major role changes and financial stressors are experienced in many families, adding to the burden of care. However, very little is known about the rates of psychopathology in carers of HSCT patients. Due to the arduous nature of HSCT, psycho-educational programmes have been developed by major transplant centres and hospitals in order to provide HSCT patients and their families with information on the treatment process, side effects, risks, and long-term outcomes. Research on patient education in oncology has shown that providing patients and carers with information about their illness and treatment reduces anxiety and distress. To date, there have been no empirical evaluations to support the use of education programmes for HSCT patients. While it could be assumed that information would be helpful in reducing anxiety and depression in HSCT as it is in oncology generally, the information provided to these patients is usually more confronting and therefore, may be less reassuring. Thus, it is not known whether providing patients with education about HSCT reduces patient and carer distress or whether it might actually increase adverse outcomes. The aim of the present study was to evaluate the rates and correlates of distress in carers and patients and examine the effect of a psychoeducation programme for patients undergoing HSCT and their carers on knowledge, distress, information satisfaction, social support and caregiver burden. A randomised control trial was conducted to provide empirical data in relation to the latter aim. The following hypotheses were proposed. Firstly, it was hypothesised that patients and carers who received the education programme would have higher levels of knowledge, not evidenced in a group waiting to receive the programme. Secondly, it was hypothesised that the education program would not lead to increased anxiety and depressive symptoms. Thirdly, patients who know more about their condition would be the least distressed. As predicted, this study found high levels of distress, particularly in carers. Higher patient distress was related to having more concern about one’s illness and experiencing more symptoms. Education was effective in increasing patient and carer knowledge. Importantly there were no adverse effects of knowledge and greater patient knowledge following the education program was associated with less distress, although there was no direct effect of education on distress. Future research should aim to identify what aspects of the education program are helpful to patients. Finally, support interventions such as CBT are needed to help patients and carers, in particular, cope with the high levels of distress inherent in the HSCT experience.

Aims: The aims of this thesis were twofold. First, to review the literature on parental locus of control and its role in psychological outcomes for parents who have a child with an intellectual disability (ID). Second, a research study aimed to explore levels of parental subjective wellbeing in a specific group of these parents: those who have a child with profound and multiple intellectual disabilities (PMID). More specifically, whether two different types of parental cognition, parental locus of control and recognition of positive gains of having a child with PMID, were predictive of parental subjective wellbeing. Method: A systematic review of the literature was conducted to address the first aim. For the research study, a single sample of parents and family caregivers (n=101) completed three quantitative self-report questionnaires as part of a within-participant, cross-sectional survey design. These included the Positive Gain Scale, a modified version of the Parental Locus of Control Scale, and the Warwick-Edinburgh Mental Wellbeing Scale . Results: The systematic review highlighted the influence of parental locus of control and other parental cognitions on parent and family psychological outcomes. The research study revealed that parental subjective wellbeing in this group of parents (N= 101) was lower than in the general population. Multiple regression analysis revealed that parental locus of control significantly predicted parental subjective wellbeing (β= -.279, t(2,99)= 9.419, p= .005), accounting for around 8% of the variance in WEMWBS scores, R2= .081, F(2,99)= 5.474, p= .006. Conclusions and implications: Although the systematic review and the research study highlighted the importance of parental locus of control for parents of children with ID, the results of the study suggest that other factors are also involved in influencing subjective wellbeing of parents of children with PMID. They also indicate a potential role for psychological intervention for parents and families with a focus on adjusting beliefs and expectations and promoting an internal parental locus of control. However, further research exploring the emotions and experiences of this group of parents is needed.