Tesis sobre el tema "Supportive care in cancer"

Lung cancer has developed from a rare condition into the leading cause of cancerrelated death in the United Kingdom. Lung cancer patients face a disease with a high symptom burden, increased psychosocial needs and a high mortality. Supportive care needs are often relevant from diagnosis. Despite this there are no clear follow-up structures for lung cancer patients that address both cancer management and supportive care. The aims of this study were to evaluate supportive care needs, assess predictors of such needs and identify factors which could aid service provision within Stobhill lung cancer services. Methods Supportive care needs were measured using an adapted Palliative Outcome Scale (POS), incorporated within a larger questionnaire. All lung cancer patients attending the clinic could complete this questionnaire. Respiratory symptoms, performance status, service usage, preferences and satisfaction were also assessed. Data were stratified to allow evaluation of three clinical groupings: all patients, newly diagnosed patients and patients in the last three months of life. Analyses were phased: descriptive analyses, univariate tests of association and multivariate regression. Results Three hundred and fifty three lung cancer patients completed questionnaires. The high symptom burden in lung cancer was confirmed. Anxiety, pain and dyspnoea were identified as the key issues. Poor performance status was identified to be an independent predictor of increased POS score, increased anxiety, increased pain and increased dyspnoea. There was no independent relationship between POS and survival. Although the majority of patients were satisfied with the care received, there was uncertainty regarding who was in charge of care and some disparity in preferred structure for follow-up. Conclusions Despite recent advances in lung cancer management, improvements are still required to address unmet supportive care needs of patients. Particular attention should be given to those with poorer performance status to effectively identify and meet such needs.

The purpose of the study was to describe the personal experience of individuals undergoing cancer treatment in an outpatient clinic by examining their perceived supportive care needs. The theoretical basis of the study lies in Alfred Adler's holistic view of human beings as unique and indivisible (1927/1954). Six individuals recently diagnosed with cancer were recruited from the same regional outpatient cancer clinic located at a major university medical center. A semi-structured interview process with open-ended questions was utilized to understand how people individually and collectively experience cancer and cancer treatment. The 17 factors of the wellness model (Witmer, Sweeney, & Myers, 1998) were used to assess the perceived supportive care needs of the study's participants. Data were analyzed using Interpretative Phenomenological Analysis (Smith, 1998) to ascertain emergent themes and interpret the meanings of the perceptions patients have of their cancer experience. The data resulted in eight major themes being present including facing mortality; uncertainty about the future; understanding cancer diagnosis and treatment; reliance on faith; maintaining control; love and support from family; physical impact of cancer; and importance of self-care. These themes provide insight into the perceived supportive care needs that patients experience during cancer treatment. With the exception of cultural and gender domains, the holistic assessment process identified patients' needs. The factors of wellness appear to capture the experience of individuals during cancer treatment. As an approach to assessing the coping skills of cancer patients, the wellness model seems appropriate for use by clinical mental health counselors. Implications for counselor theory, training, and practice with this unique client population are discussed.

The diagnosis and treatment of cancer can have a major impact on many aspects of health and well-being, with patients experiencing a variety of supportive care needs. In recognition of these needs, cancer policy internationally now acknowledges the importance of supportive care alongside clinical care. In order to reduce unmet supportive care needs among people with cancer, these unmet needs must first be quantified and then potential interventions to reduce unmet needs must be developed and tested. This thesis presents a series of studies which addresses the following aims: 1) To quantify and measure the unmet supportive care needs of people with colorectal cancer; 2) Ascertain the utility of a particular approach of supportive care service delivery, specifically nurse-delivered telephone supportive care; 3) To evaluate in a pilot study the novel nurse-delivered telephone supportive care intervention - CONNECT. Chapter One first provides an epidemiological perspective of colorectal cancer. Within Australia and NSW it is the second most common cancer, and cases in both jurisdictions have doubled in the last two decades. Within NSW, future modelling predicts that the number of new colorectal cancer cases in 2016 will represent a 19.5% increase from what was reported in 2007, and by 2036 will represent a 60.3% increase. Therefore the burden of this disease within the community will remain high. Chapter One next summarises the main treatment options for colorectal cancer, that is surgery, radiotherapy and chemotherapy. Clinical overviews of these treatment modalities are provided with the rationale for their use described. Advances in clinical management have improved post-operative mortality and survival outcomes of people treated for colorectal cancer. Therefore these survival improvements, coupled with increases in cases of colorectal cancer, will result in more people living with the outcomes of treatment. It is expected that in the future, disability due to colorectal cancer and its treatment will become a more important contributor to the burden of disease than mortality. The remainder of Chapter One then describes the range of adverse outcomes of colorectal cancer treatment. These include reductions in quality of life and specific morbidities such as pain, issues with wound healing, bowel, urinary and sexual dysfunction. The negative psychological consequences of treatment are also explored. Chapter One concludes by acknowledging that cancer treatment and treatment outcomes will result in a unique set of health care needs. Chapter Two introduces that health care need as a foundation to guide cancer service development and delivery. Despite the growing interest in health care need, there is little discourse of what is actually meant by the term ‘need’ and the underlying theoretical or conceptual basis of its measurement. Therefore a critical overview is presented in Chapter Two of the range of definitions and theories that seek to conceptualise what is meant by the term ‘need’. Need interpretations are described from psychological, humanitarian, social policy, academic and health care perspectives. The concept of unmet need is also introduced whereby unmet need is viewed as resource deficit. The findings of this review confirm that ‘need’ and ‘unmet need’ are conceptually different and distinct. Measurement of need is argued to be limited in scope as it only identifies potential problems. Need identification does not provide information about whether need has been met or whether current service interventions are successful at addressing and satisfying need. In contrast, ‘unmet need’ is considered a more patient relevant concept. It is indicative of where patient care is compromised and therefore is more relevant to health service development, as the focus of attention is on areas were service provision is inadequate, inaccessible or not in existence. Following this, Chapter Two concludes with a definition of the types of potential unmet needs that people with cancer could experience, in particular unmet supportive care needs. Supportive care is defined as an umbrella term that embraces the full range of needs, physical and psychosocial, that emerge for a patient due to the impact of cancer. Following this discussion of need and unmet need, Chapter Three describes the specific aims of this thesis. Chapter Four presents the results of a systematic review of the international literature in which the prevalence of unmet supportive care needs of people is described. The initial search identified 22,781 potentially relevant articles. However only 94 were found to be relevant to the research question and only 57 studies quantified unmet supportive care need. These studies were classified by specific time of the cancer illness, for example diagnosis, treatment and post-treatment. Prevalence of need was highly variable in all domains (ranging from 1% to 93%), across all time points and varied within and between studies. The most frequently reported unmet needs were those in the activities of daily living domain (1–73%), followed by psychological (12–85%), information (6–93%), psychosocial (1–89%) and physical (7–89%). Needs within the spiritual (14–51%), communication (2–57%) and sexuality (33–63%) domains were least frequently investigated. Compared to any other time points of the cancer illness, the treatment phase exhibited the largest variation in the prevalence of unmet need for each domain. However, unmet needs were more likely to be found in a larger proportion of people post-treatment. Trends and predictors were also highly variable across all time points. Tumour specific unmet needs were difficult to distinguish and notably, there is a significant lack of evidence pertaining to any specific unmet needs of people with colorectal cancer. The review also highlights the difficulties in gauging levels of unmet need given the varied study questionnaires used and differences in the classification of unmet need reporting methods. Further, a lack of standardised approach to reporting of the instruments precludes comparison of data from different sources. Accurate measurement of unmet need is essential to be able to monitor patients as they progress through their cancer illness and identify where additional support is required. It is also imperative that within supportive care trials unmet need is reliably assessed to determine the true efficacy of an intervention. Therefore, given the issues with unmet need measurement identified in Chapter Four, Chapter Five sought to provide a systematic overview of instruments that measure this concept. Eighteen instruments were identified and were classified as generic, need, cancer type or stage of illness specific. Based on the descriptions and psychometric properties of each instrument, the following recommendations are made for the most optimal instruments to measure unmet need in people with cancer from each category of instrument; the Supportive Care Needs Survey was considered to be the best generic instrument to measure unmet need, whereas the Prostate Cancer Needs Questionnaire and Needs Evaluation Questionnaire were the best available tumour and stage of disease specific assessments respectively. Chapter Six reports the findings from an empirical study to quantify colorectal cancer patients’ supportive care needs following their discharge after cancer surgery. As post-discharge needs are managed by a senior colorectal cancer nurse co-ordinator, a review of these occasions of service provides a measure of the level of unmet need. Nursing records for consecutive patients discharged from a quaternary referral colorectal cancer surgical unit in Sydney were reviewed. All non-admitted patient occasions of service (NAPOOS) were identified. Of 521 eligible patients, 219 (42%) received 988 postoperative NAPOOS. These were largely delivered over the telephone (72%) or during face-to-face contact at outpatient appointments (26%). Most NAPOOS were recorded within the first two weeks following discharge but some occurred beyond 6 months. Overall, 1369 specific unmet needs were identified during these NAPOOS. Ongoing support, reassurance and monitoring were required for 186 patients (85%). Physical needs relating to wound care and bowel function were prevalent for 15-20%, information needs for 20% and assistance organising follow-up appointments for 36% of the sample. Predictors of unmet need in this patient group were varied. Older patients (>65 years) were significantly less likely to record a NAPOOS (OR 0.97, 95%CI: 0.96-0.99) whilst people with rectal cancer were significantly more likely to report multiple NAPOOS (OR 2.80, 95%CI: 1.60-5.01) and physical needs (3.56, 95%CI: 2.03-.27). Rehabilitation needs were more likely to be expressed by emergency department admitted patients (AOR 2.23, 95%CI: 1.07-4.65). After adjusting for admission status, patients residing in capital cities were significantly less likely to experiences need in this domain (AOR 0.37, 95%CI: 0.20-0.70). Given that ad-hoc nurse-delivered supportive care by telephone is currently provided as described in Chapter Six, systematisation of this type of intervention holds promise to reduce unmet needs in this patient group. Chapter Seven presents a systematic review of studies which have evaluated nurse-delivered supportive care interventions. Critical appraisal of studies was conducted using standardised instruments namely the CONSORT statement for randomised trials and STROBE statement for non-randomised studies. Of 2,451 potentially relevant articles, only 13 studies were found to be relevant to the research question, comprising five randomised controlled trials and eight nonrandomised studies. All studies demonstrated that it is feasible to deliver supportive care over the telephone for people in follow-up for cancer. Furthermore, using a nurse to deliver such interventions was found to be acceptable to patients resulting in a positive experience. Some studies have highlighted that potentially, significant improvements can be made to patients’ quality of life, satisfaction with care and unmet information needs, but definitive conclusions could be recorded due to the variable methodological quality and reporting characteristics. Chapter Eight describes a nurse-led telephone intervention, the ‘CONNECT’ intervention and presents a randomised pilot study. CONNECT is delivered by a cancer nurse over the telephone in the six months following patients’ discharge from hospital after surgery. This intervention was designed to supplement exist follow-up strategies. The content of each CONNECT call is standardised to address supportive care domains of unmet need. To evaluate this intervention, patients with colorectal cancer at Royal Prince Alfred Hospital, Sydney were randomised to receive the telephone intervention (n=39) or usual follow-up care (n=36). Feasibility and acceptability of this service delivery approach were assessed as a primary outcome. Patient reported primary outcomes assessed included unmet supportive care needs, quality of life, psychological distress and health service utilisation. Outcomes assessments were assessed at baseline then at one, three and six months post-discharge using a series of postal or telephone questionnaires. The consent rate to this trial was 86%. The CONNECT intervention was shown to be feasible and successful in identifying patient unmet needs. Between 84% and 95% of intervention group patients completed each CONNECT call with the nurse, where a range of unmet needs were identified. Feedback from participants about the intervention was extremely positive. The reassurance, support and sense that someone was monitoring individual needs during each call were seen as benefits of this service. Statistically significant differences between study groups in terms of all patient reported outcomes eluded this evaluation. Scores and changes scores for unmet need, quality of life, psychological distress and health service utilisation were comparable between groups. However scores favoured the intervention group. For example, at three months total SCNS-SF34 scores for intervention group was 98.1 and 110.0 for the control group. At six month total CaSUN scores were 10.0 (intervention) and 14.0 (control). Trends over time for these outcomes were also not statistically significantly different between groups. However some clinically relevant findings from this evaluation were demonstrated. Total FACT-C scores at six months showed that intervention group participants reported higher quality of life compared to control group participants (106.0 versus 98.6). Whilst not statistically different, the findings were in the expected direction and the difference (7.4) between the groups is clinically relevant. The most promising development from utilisation data was the difference, favouring the intervention group, resulting in a ≥10% reduction in presentations to emergency departments and readmission rates to hospital. Given this trial was a pilot study, post-hoc power was ascertained. This found that despite an a priori sample size calculation, the trial was underpowered. This may have resulted in a false negative result. Chapter Nine provides an overview of the key findings from the series of studies undertaken in this thesis. The implications of study results are explored in relation to policy, clinical practice and research.

Gynaecological cancer survivorship has been addressed in only a limited body of research. After completion of treatment, women with gynaecological cancer face many challenges. It is pertinent that we understand the wellbeing and morbidity issues of this group of survivors, as well as their supportive care needs and use. With this understanding, it will be possible to better target health care initiatives and services to those gynaecological cancer survivors who require help. Accordingly, the objectives of this study were to determine the prevalence of site-specific morbidities, support being utilised, and unmet needs, as well as to determine the correlates of supportive care needs and use. To address this, a cross-sectional mail survey of 1774 Queensland gynaecological cancer survivors three months to five years post-diagnosis was conducted in 2004 (56.5% response rate, n=802 of 1420 eligible participants). Women were recruited from the Queensland Gynaecological Cancer Registry, which covered approximately 85% of all gynaecological cancer patients in Queensland at the time of this study. The questionnaire measured a range of factors to reflect a social-ecological perspective. This broader perspective was utilised to extend the current understanding which is limited to a biopsychosocial approach. Main outcomes were measured with standardised and validated instruments where possible, including the Supportive Care Needs Survey, Functional Assessment of Cancer Therapy, Duke-UNC Functional Social Support Questionnaire and the Active Australia Survey. The results of this survey showed that while quality of life was high on average (median 91, range 30-108), some women experienced debilitating site-specific conditions. Ten percent reported being diagnosed with lower limb lymphoedema and eight percent of women reported that their gynaecological cancer had made sexual relations too difficult or too uncomfortable. Women accessed multiple sources of support within their communities including a variety of support services (54%) and complementary therapies (29%). Characteristics associated with use of support services include: younger age, being retired, having been diagnosed with a gynaecological cancer other than uterine, having had open bowel resection, having been treated at multiple centres, being in remission, being obese. On average, women reported having excellent social support (median 37, range 8-40). Some women made changes to healthier behaviours following their cancer diagnosis, such as increasing their fruit and vegetable intake (23%) or physical activity levels (10%) or decreasing their alcohol consumption (24%) or cigarette smoking (10%); however, nearly half (44%) of women decreased their physical activity level. A population comparison of health behaviours between gynaecological cancer survivors and Queensland women highlighted the significantly lower level of sufficient physical activity and higher level of obesity in the cancer survivor population, as well as the low levels of adequate vegetable intake in both populations. Forty-three percent of gynaecological cancer survivors reported having at least one moderate or high level unmet supportive care need. In particular, needing help with fear about the cancer spreading, concerns about the worries of those close to them, uncertainty about the future, lack of energy/tiredness, and not being able to do things they used to do, were most important to this group. These leading need items were all within the psychological and physical/daily living supportive care domains. Some unmet sexuality and health system/information needs were also reported. Groups with higher odds of unmet needs included those women who more recently completed treatment, whose disease was still present, who had children still living in the home, who had diagnosed lymphoedema, who experienced treatment-related menopause, who were unable to work due to illness and who lived in rural and remote regions of Queensland. These results indicate that women with gynaecological cancer in Queensland are doing quite well overall; however, there is still room for improvement in a few key areas of public health importance. In line with the social-ecological model, resources need to be targeted at all levels of support including personal, social, health care and broader organisational, community, policy and media levels. In particular, the following recommendations are made: 1. Assistance with the particular reported unmet psychological and physical/daily living needs is a priority. Support services should be tailored to the identified groups of survivors who had higher odds of unmet needs, both in terms of development of written materials that reflect these groups' circumstances and implementation of programs or workshops specific to these groups. In particular, the development of a number of programs or workshops are recommended that discuss the specific psychological and physical/ daily living outcomes of women who a) live with cancer, b) live with children after cancer treatment, c) live with lymphoedema, d) have had treatment-related menopause or e) are unable to work due to illness, and how and where women can get help with managing these. These programs should be implemented by support organisations in the period closely following treatment completion and should consider technologies such as video-conferencing to reach women who are in rural and remote areas. 2. More specific written information for cancer survivors about things they can do to help themselves get well is needed, in lay-person friendly format. This information should address the value of particular dietary items, complementary therapies and types of physical activities that are safe and beneficial to cancer survivors' quality of life. 3. An evidenced-based physical activity intervention, targeting overweight and obese gynaecological cancer survivors is recommended, to reduce the weight issues of this population. 4. To facilitate the triage of cancer survivors to appropriate health care information and other support initiatives, cancer survivors' awareness of the Queensland Cancer Fund needs to be raised substantially. Practitioner education and discharge planning directives are recommended to ensure information about the Queensland Cancer Fund is disseminated. 5. To address the substantially unmet information and physical/ daily living needs specific to lymphoedema sufferers, it is recommended that self-management information and referral information for suppliers and services for lymphoedema management be given to women in high lymphoedema risk groups, as part of the hospital discharge procedure, as well as when symptoms are diagnosed, to ensure a continuum of care is maintained. 6. Clinical practice guidelines for cancer care and, correspondingly, support programs, need to expand from acute care to managing the long-term psychological, physical and sexual health consequences. Several topics for research are likely to be important in the future, including more specific research into why uterine cancer survivors reported higher odds of unmet psychological needs and yet were less likely to use support services, what specific help women with unmet needs would prefer, the effects of lower limb lymphoedema on survivors' quality of life, and why there isn't greater use of existing support services, especially among women with morbidity such as lymphoedema and issues associated with treatment-related menopause.

Gynaecological cancer survivorship has been addressed in only a limited body of research. After completion of treatment, women with gynaecological cancer face many challenges. It is pertinent that we understand the wellbeing and morbidity issues of this group of survivors, as well as their supportive care needs and use. With this understanding, it will be possible to better target health care initiatives and services to those gynaecological cancer survivors who require help. Accordingly, the objectives of this study were to determine the prevalence of site-specific morbidities, support being utilised, and unmet needs, as well as to determine the correlates of supportive care needs and use. To address this, a cross-sectional mail survey of 1774 Queensland gynaecological cancer survivors three months to five years post-diagnosis was conducted in 2004 (56.5% response rate, n=802 of 1420 eligible participants). Women were recruited from the Queensland Gynaecological Cancer Registry, which covered approximately 85% of all gynaecological cancer patients in Queensland at the time of this study. The questionnaire measured a range of factors to reflect a social-ecological perspective. This broader perspective was utilised to extend the current understanding which is limited to a biopsychosocial approach. Main outcomes were measured with standardised and validated instruments where possible, including the Supportive Care Needs Survey, Functional Assessment of Cancer Therapy, Duke-UNC Functional Social Support Questionnaire and the Active Australia Survey. The results of this survey showed that while quality of life was high on average (median 91, range 30-108), some women experienced debilitating site-specific conditions. Ten percent reported being diagnosed with lower limb lymphoedema and eight percent of women reported that their gynaecological cancer had made sexual relations too difficult or too uncomfortable. Women accessed multiple sources of support within their communities including a variety of support services (54%) and complementary therapies (29%). Characteristics associated with use of support services include: younger age, being retired, having been diagnosed with a gynaecological cancer other than uterine, having had open bowel resection, having been treated at multiple centres, being in remission, being obese. On average, women reported having excellent social support (median 37, range 8-40). Some women made changes to healthier behaviours following their cancer diagnosis, such as increasing their fruit and vegetable intake (23%) or physical activity levels (10%) or decreasing their alcohol consumption (24%) or cigarette smoking (10%); however, nearly half (44%) of women decreased their physical activity level. A population comparison of health behaviours between gynaecological cancer survivors and Queensland women highlighted the significantly lower level of sufficient physical activity and higher level of obesity in the cancer survivor population, as well as the low levels of adequate vegetable intake in both populations. Forty-three percent of gynaecological cancer survivors reported having at least one moderate or high level unmet supportive care need. In particular, needing help with fear about the cancer spreading, concerns about the worries of those close to them, uncertainty about the future, lack of energy/tiredness, and not being able to do things they used to do, were most important to this group. These leading need items were all within the psychological and physical/daily living supportive care domains. Some unmet sexuality and health system/information needs were also reported. Groups with higher odds of unmet needs included those women who more recently completed treatment, whose disease was still present, who had children still living in the home, who had diagnosed lymphoedema, who experienced treatment-related menopause, who were unable to work due to illness and who lived in rural and remote regions of Queensland. These results indicate that women with gynaecological cancer in Queensland are doing quite well overall; however, there is still room for improvement in a few key areas of public health importance. In line with the social-ecological model, resources need to be targeted at all levels of support including personal, social, health care and broader organisational, community, policy and media levels. In particular, the following recommendations are made: 1. Assistance with the particular reported unmet psychological and physical/daily living needs is a priority. Support services should be tailored to the identified groups of survivors who had higher odds of unmet needs, both in terms of development of written materials that reflect these groups' circumstances and implementation of programs or workshops specific to these groups. In particular, the development of a number of programs or workshops are recommended that discuss the specific psychological and physical/ daily living outcomes of women who a) live with cancer, b) live with children after cancer treatment, c) live with lymphoedema, d) have had treatment-related menopause or e) are unable to work due to illness, and how and where women can get help with managing these. These programs should be implemented by support organisations in the period closely following treatment completion and should consider technologies such as video-conferencing to reach women who are in rural and remote areas. 2. More specific written information for cancer survivors about things they can do to help themselves get well is needed, in lay-person friendly format. This information should address the value of particular dietary items, complementary therapies and types of physical activities that are safe and beneficial to cancer survivors' quality of life. 3. An evidenced-based physical activity intervention, targeting overweight and obese gynaecological cancer survivors is recommended, to reduce the weight issues of this population. 4. To facilitate the triage of cancer survivors to appropriate health care information and other support initiatives, cancer survivors' awareness of the Queensland Cancer Fund needs to be raised substantially. Practitioner education and discharge planning directives are recommended to ensure information about the Queensland Cancer Fund is disseminated. 5. To address the substantially unmet information and physical/ daily living needs specific to lymphoedema sufferers, it is recommended that self-management information and referral information for suppliers and services for lymphoedema management be given to women in high lymphoedema risk groups, as part of the hospital discharge procedure, as well as when symptoms are diagnosed, to ensure a continuum of care is maintained. 6. Clinical practice guidelines for cancer care and, correspondingly, support programs, need to expand from acute care to managing the long-term psychological, physical and sexual health consequences. Several topics for research are likely to be important in the future, including more specific research into why uterine cancer survivors reported higher odds of unmet psychological needs and yet were less likely to use support services, what specific help women with unmet needs would prefer, the effects of lower limb lymphoedema on survivors' quality of life, and why there isn't greater use of existing support services, especially among women with morbidity such as lymphoedema and issues associated with treatment-related menopause.

Having a cancer diagnosis during early adulthood can bring significant challenges. It is important to provide supportive care with consideration of their developmental challenges. Nurses’ supportive communication plays a vital role in helping them cope and adjust to the life-changing event of cancer. This study aimed to explore the therapeutic communication between nurses and young people diagnosed with cancer, focusing on those aged between 18 and 25 (developmental literature termed this group emerging adults). In-depth interviews with eight emerging adults with cancer (EAs) and seven nurses were undertaken. Findings revealed that EAs greatly benefited from the informal conversations they had with nurses on a day-to-day basis. They established trust-based relationship with nurses from which therapeutic processes occurred organically. These informal conversations, which on the surface seemed clinically insignificant, fulfilled these young individuals’ basic psychosocial needs such as feelings of belongingness, connectedness, and acceptance. These conversations also helped them regain a sense of control and normality by talking about and making sense of their experiences. Nurses engaged in informal conversations with EAs with a therapeutic intention. For them, it was a way to ease EAs into the hospital environment and also to learn about the needs of each EA in order to provide tailored support. Challenges such as emotional exhaustion, inherent in the interpersonal nature of therapeutic communication, were noted. Some of the participants, however, learnt to draw appropriate professional boundaries that enabled them to provide compassionate therapeutic communication with EAs while protecting their own emotional wellbeing. The study documents the nature of therapeutic communication through the perspectives of EAs and nurses. It highlighted the benefit of therapeutic communication which happens at an informal, day-to-day level. Nurses and health organisations would benefit from understanding the value of the therapeutic benefits of informal conversations during the care of EAs. The findings also suggested that nurses need to build their capacities relating to therapeutic communication such as emotional regulation skills, resiliency, and the ability to maintain healthy boundaries with EAs.

Most patients with pancreatic cancer will present with metastatic or locally advanced disease. Unfortunately, most patients with localized disease will experience recurrence even after multimodality therapy. As such, pancreatic cancer patients arrive at a common endpoint where decisions pertaining to palliative care come to the forefront. This article summarizes surgical, endoscopic, and other palliative techniques for relief of obstructive jaundice, relief of duodenal or gastric outlet obstruction, and relief of pain due to invasion of the celiac plexus. It also introduces the utility of the palliative care triangle in clarifying a patient's and family's goals to guide decision making.

Although provision of palliative care on the United States is growing, referrals to the service are often late or non-existent. The simultaneous care model provides a blueprint for the most progressive form of palliative care, which is palliation and disease-oriented treatments delivered concurrently. Research indicates the existence of a widespread misconception that associates palliative care with imminent death, and some organizations have chosen to re-brand their palliative care services to influence this perception. The goal of this study was to assess the effects of a name change from palliative care to supportive care on the communicative process during referrals to the service.

This mixed methods PhD project explored the health service and supportive care needs of women with advanced breast cancer in Ghana from their perceptions as well as from those of relevant healthcare professionals and key informants from breast cancer organisations. The thesis provides evidence that this cohort has numerous and complex needs. The project’s findings can help guide health policy and the development of evidence-based tailored health and supportive care services, programs and interventions in Ghana to address these women’s needs, which will empower the women to better manage their day-to-day lives to maintain and/or improve their quality of life.

Health inequality has become a research imperative worldwide. Cancer is a global burden, but little is known about the experiences of immigrant patients. This mix-method research aimed to fill the knowledge gaps. The qualitative phase involved a descriptive, focus-group study to explore immigrants’ cancer experiences in Australia. Participants were 91 cancer patients/carers from Arabic, Chinese and Greek communities. The data were subjected to thematic analysis. Participants raised main challenges including: 1) high level of cancer-related distress; 2) communication barriers; 3) lacking understanding of the health system; 4) cultural alienation. Culturally-driven coping styles and coping resources were also explored. The quantitative phase involved a large scale survey via 16 recruiting clinics nationwide, yielding a dataset of 571 immigrant patients (145 Arabic, 248 Chinese, and 178 Greek-speaking patients) and 274 Anglo-Australian-born patients. Three separate analyses were conducted of the data: 1) to document the extent of disparities in psychosocial outcomes in immigrants; 2) to elicit cancer patients’ unmet Cancer Information and Support, Physical and Daily Living, and Sexuality needs during the active treatment phase; 3) to compare illness perceptions of cancer among immigrants and Anglo-Australians, applying the Self-Regulatory model. The quantitative results showed that immigrants are disadvantaged compared to Australian-born English-speaking patients, with worse psychosocial outcomes. Contributing factors include poor understanding of English and of the health system, as well as maladaptive culturally-driven perceptions of cancer. Immigrants reported many unmet needs for help with daily living activities, information, and language assistance. This research has provided insights into the factors influencing the psychosocial outcomes of immigrants with cancer, and provides some guidance regarding appropriate interventions to reduce health disparities.

Women treated for a gynecological cancer report longstanding post-treatment difficulties for which they rarely seek or receive help. Few intervention studies have successfully improved global sexual health within this population. Research in this domain is challenging due to inconsistent measurements of sexuality, low response rates and high attrition rates. The overarching study objectives were: (a) To contribute to the advancement of research on supportive care needs (including sexual health needs), desire for help, and predictors of needs; and, (b) To inform the development of services for gynecological cancer survivors. In Study 1, a qualitative interview study explored the experiences of 15 gynecological cancer survivors. Interviews were conducted and analysed based on the Interpretive Description approach . In Study 2 (for which results were analyzed in two parts), a descriptive, cross-sectional needs assessment was conducted to measure supportive care needs, desire for help, sexual health and vaginal changes, and service format preferences in 113 patients. In Part 1 of Study 2, descriptive and regression analyses explored patient needs, desire for help and potential predictors of these variables. In Part 2, a descriptive analysis explored sexual health needs and vaginal changes, desire for help with sexual health needs, and their associations with sociodemographic and medical variables. Qualitative results from Study 1 suggested that psychological, emotional and relational aspects of sexuality were as important to the participants as physiological sexual response. In the needs assessment, the strongest predictors of greater unmet needs and increased readiness for help were younger age and shorter time since treatment. Moderate to high sexual and social needs were equally prevalent in women recently treated and those treated several years prior to the study, suggesting that sexual and social needs may remain unaddressed over time. Further, many women who reported a need did not desire help, demonstrating the subjectivity of needs and distress, as well as the potential presence of barriers to seeking help. Both studies revealed a common finding, where sexual health needs were a product of the discordance between participants’ current sexual experiences and their perceptions of ideal sexual health. Overall, the two studies indicate that a significant subgroup of patients experience unmet needs in cancer survivorship, most of which are non-physical; also, while some needs were higher following treatment, unmet social and sexual health needs show little relationship with time since treatment. Ambivalence about receiving help with unmet needs is related to beliefs about the role of the health care team in meeting non-physical needs, as well as other perceived barriers. Patient’s perceived sexual health needs and barriers to receiving help should be evaluated within a comprehensive framework of needs and discussed one-on-one. Future research should explore the added predictive value of other groups of medical and psychological variables.

Aims: This thesis investigated the health and supportive care needs of surgical lung cancer patients to address gaps in the evidence base and inform future service developments. Additionally, the prognostic significance of smoking behaviour was investigated. Methods: Semi-structured interviews were conducted with 29 surgical (VATS and thoracotomy) lung cancer patients to explore health, functioning, smoking, satisfaction with recovery and preferences for a tailored rehabilitation programme. Interviews were analysed using framework approach. Systematic literature searches were conducted to review evidence of the association between smoking history or continued smoking after diagnosis and prognosis. Survival estimates were combined where possible using a random effect inverse variance model. Results: Most participants experienced difficulty during recovery. Breathlessness and pain emerged as dominant health challenges. Participants were open to being offered smoking cessation support. From 78 and 10 studies, preliminary evidence was found that both smoking history and continued smoking are associated with prognosis, respectively. Analyses indicated that smoking-associated increased risk may be mediated through cancer-related pathways. Conclusions: Many surgical lung cancer patients’ supportive care needs are not being met. Well-developed treatments and services for management of breathlessness, pain and smoking cessation may improve quality of life and health outcomes after lung cancer surgery, and require further testing.

Melanoma is the fourth most common cancer in Australia and its incidence continue to increase. The diagnosis and treatment of melanoma can impact upon many aspects of an individual’s life, including psychological and emotional well-being. In recognition of the psychological consequences of melanoma, Australian and New Zealand and other international guidelines for management of melanoma recommend psychological support be available alongside clinical care. This randomised controlled trial examined the efficacy of a psycho-educational intervention to reduce fear of cancer recurrence (FCR) and improve psychological adjustment in this patient group, compared to usual care. Methods: The intervention comprised a newly developed psycho-educational resource and three telephone-based psychology sessions over a one month period, timed in accordance with dermatological appointments. Participants were randomly assigned to the intervention (n=80) or usual care (n=84). Assessments were completed at baseline, one and six months following dermatological appointments. Linear mixed models were used to examine differences between treatment and control groups for patient-reported outcomes, including FCR, anxiety, stress, depression, melanoma-related knowledge, health behaviours, satisfaction with melanoma care, unmet needs, and health-related quality of life. Results: At six months, the intervention group reported lower FCR Severity, Triggers and Distress scores than the control group in the baseline-adjusted models; the between-group mean difference was -1.9 for FCR Severity (95% CI:-3.1,-0.7; p=0.002), -2.0 for FCR Triggers (95% CI:-3.3,-0.7; p=0.003) , and -0.7 for FCR Distress (95% CI:-1.3,-0.1; p=0.03). The decrease in FCR Severity (but not Triggers or Distress) remained statistically significant after adjusting for other covariates (p=0.04). At six months, the intervention group also reported lower stress (-1.6, 95% CI:-3.1,-0.2; p=0.03) and improved melanoma-related knowledge (1.7, 95% CI:0.8, 2.6; p=0.0004) compared to controls. Conclusion: This newly-developed, evidence-based, psycho-educational intervention was effective in reducing FCR and stress, and increasing melanoma-related knowledge in people at high risk of developing another melanoma.

Background: The palliative and supportive care needs of children with cancer and their families are unique and require special attention. Children and their families in Africa facing lifethreatening/ life-limiting diseases have unique needs and have the right to achieve effective and evidence-based care. Development of appropriate services sensitive to the needs of families and based on observed evidence has become more and more recognized. As an introduction to develop and improve supportive and palliative care services for children with cancer, families were questioned regarding their experiences and suggestions for improvements. Methods: Sixteen family members of children with cancer and treated at Universitas Academic Hospital, Bloemfontein, South Africa, were questioned regarding their children's standard oncology and supportive/palliative care. Their responses were studied and repeating themes were identified. Results: A number of areas of need were identified: erratic psychosocial support, minimal financial support, poor parental access to basic needs and food provision, preventable errors in procedures and lack of sibling support. Staff were also not always sufficiently equipped to attend to palliative care patients. Conclusions: Supportive and palliative care for children with cancer needs to be improved. Family members are a valuable resource and the interviews identified a number of themes, valuable to consider in the expansion of a supportive/palliative care service. The intension of the study was to create the awareness that by making small and affordable changes, the quality of care that children and families receive can be improved.

Aim: The aims of this essay were first to see if there were any factors that could have an inpact on participating in supportive care groups and activities after a prostatic cancer diagnosis. The second aim was to examine what kind of support the patients would chose.   Methods: Data was collected with a survey handed out to the prostate cancer patients visiting the urologist reception at the hospital in Uppsala, during two weeks in the fall of 2011.   Main Results: Men show very little interest in participating in supportive care groups and activities. When asked to chose which kind of support they could consider, individual sessions and group sessions were the most common choice.   Conclusion: Men diagnosed with prostate cancer chose not to participate in supportive care. Further studies are required to determine what may be the reason to that.
Syfte: Syftet med detta arbete var att se om olika faktorer kunde påverka deltagande i stödverksamhet efter att patienten fått diagnosen prostatacancer, samt vilken form av psykosocialt stöd patienterna föredrar.    Metod: Metoden som använts var en enkätstudie med både kvantitativ ansats, som delades ut under hösten 2011 till prostatacancerpatienter på urologmottagningen, Akademiska sjukhuset.   Huvudresultat: Män anger att de inte är intresserade av att delta i stödverksamhet efter diagnos och eventuell behandling. Vid behov ansåg de att enskilda eller gruppsamtal var mest relevanta som stödverksamheter. Informanterna ansåg att rehabilitering med samtal och yoga hade minst relevans.   Slutsats: Män som drabbats av prostatacancer väljer att inte delta i stödverksamhet. Behov finns därför av att utföra mer studier för att klargöra orsakerna till detta.

An emerging trend in health care is the increased use of complementary and alternative medicine (CAM) by consumers. This has led to the integration of CAM services into conventional hospital settings, which is often called integrative medicine (IM). This is most commonly seen for the management of cancer-related symptoms and side effects. This study sets out to understand different approaches to IM models of care through a comprehensive assessment of what is known about IM, evaluation of how IM operates in a number of major centres, and a comparison between the main models across three countries. Our scoping review identified five main models of IM that could be categorised into three systems (independent, dependent, and integrative). These differing models and systems depict a range of philosophical, theoretical, and practical considerations in the execution of IM models of care; moving from a focus on providers to a focus on patient centred care. The insights developed in our review were then applied to investigate the structure of IM centres and to explore the experiences of senior stakeholders of IM centres in three Western countries - the USA, Germany, and Australia. Centres in the USA and Germany were identified from their prominence in the literature, while Australian centres were identified as part of a scoping exercise that determined the proportion of cancer hospitals providing supportive care and CAM services. A mixed methods approach that incorporated survey and interview data was used to explore the IM models in operation. All of the IM centres emphasised the need for collaboration and engagement between all stakeholders. The German and USA centres retained a strong emphasis on physician-focused care while Australian centres demonstrated a greater focus on patient-centred care. The patient-centred care model requires recognition of the need to personalise medical care, including CAM, for the individual, and the requirement for more collaboration between disciplines, within teams and between staff and patients. Patient-centred care appears to represent the future direction of health care services. An organisational assessment tool was developed based on the results of this study to determine the level of integration of individual IM centres. The tool was applied to Australian IM centres. The majority of the Australian centres were evaluated as level 3 of collaboration, which indicates that in these centres CAM is integrated into the hospital system, but that the expansion of the CAM program is controlled by the hospital. The organisational assessment tool provides a means of assessing where a service sits on this matrix and could be used to plan service development. IM healthcare is complex and requires an understanding of the contextual and philosophical background of both conventional medicine and CAM in order to identify and address key barriers from both medical paradigms. Collaboration and engagement between all stakeholders is essential to meet the demands of patients seeking IM care, and to provide safe patient-centred care.

La prise en charge d’un patient atteint d’un cancer impose, au soignant, la recherche du meilleur traitement antinéoplastique possible en association avec un engagement d’accompagnement depuis l’annonce du diagnostic jusqu’à la phase après cancer ou le décès. Au cours de son parcours de soin, le malade et ses proches vont être confrontés à différentes équipes, différentes visions du traitement et différentes approches du soin. Le travail présenté consiste en une analyse nationale française sur l’organisation des soins d’accompagement ainsi que la gestion de la iatrogénie liée à trois grandes familles de thérapeutiques symptomatiques : les érythropoïétines, les biphosphonates et les morphiniques. Basé sur cette photographie du soin d’accompagnement en cancérologie, le développement de ces soins sur un établissement sera alors présenté depuis la gestion ambulatoire en hospitalisation de jour, jusqu’à l’hospitalisation complète dans une unité pilote. Le lien, les différences et les complémentarités entre les équipes aux phases curatives et palliatives seront alors discutés, permettant de définir la place et l’importance du regard global et réunificateur par le biais des soins de support en cancérologie
The management of a cancer patient requires, to the caregivers, finding the best antineoplastic therapy in combination with support involvement from the diagnosis to the stage after cancer or death. During the course of care, patient and family will be confronted with different teams, different visions and different treatment approaches of their care. The work presented starts threw an analysis of French organizations of supportive care and management of iatrogenic effects due to three main types of symptomatic therapeutics: erythropoietins, bisphosphonates and opioids. Based on this photograph of accompanying cancer care, the development in an institution of an health care will be presented for ambulatory management of day hospital for chemotherapy administration, until full hospitalization in a pilot unit. The link, the differences and complementaries between the teams in curative and palliative phases will be discussed to define the role and importance of the overall look and unifying supportive care in oncology

Background: Advanced breast cancer (ABC) is affecting substantial number of Chinese women in Hong Kong. Understanding their unmet supportive care needs (SCNs) is important for health care system to precisely allocate resources to areas demanded for help the most and for patients to achieve better quality of life. Objectives: (1) To validate Chinese version of Supportive Care Needs Survey Questionnaire (SCNS-SF34), (2) to address the prevalence of unmet SCNs at baseline (newly diagnosis of ABC) and explore relevant factors associating with baseline unmet SCNs, (3) to identify the trajectories of unmet SCNs from baseline, 6-week, 12-week, 18-week to one-year post-diagnosis of ABC among Hong Kong Chinese women and identify the predictors related to individual resources. Methods: The study consisted of two phases. In Phase I, breast cancer (BC) patients were recruited from six public hospitals and the SCNS-SF34 (which covers five domains of needs) was administered concurrently with measures of psychological distress CHQ-12 (Chinese Health Questionnaire-12), HADS (Hospital Anxiety and Depression Scale), symptom distress (MSAS-SF), and patient satisfaction (ChPSQ-9) to explore factor structure by using Exploratory Factor Analysis (EFA) and to examine internal consistency, and convergent, divergent and discriminant validities of the identified factor structure. In phase II, women newly diagnosed with ABC were recruited and followed up to assess their unmet SCN trajectories one year after diagnosis. Prevalence of initial baseline SCNs and associated demographic, medical and psychological factors were identified. Linear Mixed Modeling (LMM) was performed to assess trajectories for each SCNs domain. Hypothesized variables reflecting personal and social resources (optimism, trait hope, social support, psychological distress and patient satisfaction) were examined for association with the changes of unmet SCNs after adjusting for demographic and medical characteristics. Results: Instead of five-factor structure identified in the original SCNS-SF34, a four-factor structure with 33 items was identified, comprising: 1) Health system, information and patient support needs (HSIPS), 2) Psychological needs (PSYC), 3) Physical and daily living needs (PDL) and 4) Sexuality needs (SEX). The SCNS-SF33-C demonstrated moderate-to-good internal consistency (Cronbach’s alphas=0.75-0.92) across all domains. Acceptable convergent and divergent validity were demonstrated. Discriminant validity was demonstrated in the SCNS-SF33-C’s ability to differentiate between clinically distinct patient groups (ABC vs. localized BC and active treatment vs. no active treatment). Of the top 15 unmet SCNs, all belonged to the HSIPS domain. There were significant linear declines in unmet HSIPS and PSYC needs over the year after diagnosis, but not in PDL and SEX. After adjusting for demographic and medical factors, LMM identified symptom distress, patient satisfaction and patient satisfaction x time are predictors of HSIP. Total symptom distress, optimism, anxiety and anxiety x time predicted PSYC. Total symptom distress was predictor of PDL. Anxiety was predictor of SEX. Conclusions: The SCNS-SF33-C has a suitable factor structure and psychometric properties for the use in assessing unmet psychosocial SCN among Chinese women with BC. Generally, unmet HSIP and PSYC tended to decline, while levels of unmet PDL and SEX tended to persist over time. Specific individual resources predicted the future change of unmet SCNs.
published_or_final_version
Community Medicine
Master
Master of Philosophy

Testicular cancer (TC) is one of the most common malignancies in young men aged 15 to 35 years. This thesis provides a comprehensive evaluation of the prevalence, severity, and correlates of psychological distress, impaired HRQOL, and supportive care needs in TC survivors. Men who had completed active treatment for TC 6 months to 5 years previously with no evidence of recurrence were recruited from 14 Australian cancer centers (September 2009 – February 2011). Of 486 eligible TC survivors, 244 (50.2%) completed a self-report questionnaire measuring psychological distress (DASS21), generic HRQOL (SF-36v2), TC-specific HRQOL (EORTC QLQ-TC26), adjustment style (MAC), social support (DUFSS), and unmet needs (CaSUN). A further 24 men completed in-depth interviews. Participating TC survivors reported impairments to several more mental aspects of generic and cancer-specific HRQOL compared with the general population and TC survivors from other countries respectively. The most problematic TC-specific HRQOL issues were similarly more mental than physical. A significantly greater proportion of TC survivors also reported clinical anxiety/depression relative to the general population. It is notable that only certain HRQOL domains were impaired in TC survivors and only a subgroup had clinically relevant psychological morbidity. The number of TC survivors with strong unmet needs was also relatively small; the most prevalent unmet needs related to existential and relationship issues. This highlights the need to identify TC survivors at risk of poorer outcomes and for interventions to target the areas of greatest impairment, rather than routinely offering generic interventions. Men’s subjective perceptions of the impact of TC seem to be more closely related to their HRQOL and psychological wellbeing than objective disease and treatment factors. Men who: are younger, are not well informed about TC, experience job problems, suffer from FCR, have low social support, and are helpless-hopelessness or avoidant copers are at greatest risk of poor outcomes. Some TC survivors may be reluctant to undertake traditional forms of psychological treatment (i.e. face-to-face psychotherapy). Alternative ways of supporting TC survivors (e.g. Internet resources) may be more accessible, cost effective, and less stigmatised.

Introduction: Physical and psychosocial support is essential for people living with and beyond cancer. An increase in cancer survival rates has prompted a greater need for widely accessible patient-centred support services that integrate self-management techniques alongside routine care. Well-being groups, such as yoga therapy and creative writing, could improve QOL, enhance self-esteem and empower patients to make confident treatment decisions. Aims: (1) To understand why people living with and beyond cancer attend groups, (2) explore patients’ experiences and attitudes towards wellbeing groups, and (3) identify the perceived impact that attending a group may have. Method: A qualitative design using semi-structured interviews was employed (n=20). Participants were recruited via an NHS Cancer Centre in Central London. All participants had received a cancer diagnosis and had participated in at least three group wellbeing sessions (yoga and/or creative writing). Transcripts were analysed using an inductive approach to thematic analysis. Results: Upon completion of data analysis, 3 key themes and 9 sub-themes were established: (1) Identity, perception and reflection, (2) Feeling lost after cancer treatment ends, and (3) Always accepted, never judged. Discussion: Generally, participants reported positively on their experiences of attending a wellbeing group with many suggesting that it had enhanced their patient experience. Groups fulfill the social needs of cancer patients who seek face-to-face interactions with others who have shared similar experiences. People also crave a sense of belonging and safety after cancer treatment ends, which may explain why many patients continue to attend groups based in clinical settings. Conclusion: Further research should explore holistic cancer support further in order to raise awareness among health professionals and ensure that those living with and beyond cancer are being offered suitable psychosocial support that is right for them.

Malgré des progrès croissants en matière de dépistage et de traitement, il est estimé que 2.7 millions de cancers sont nouvellement diagnostiqués annuellement en Europe. Plus de la moitié de ceux-ci chez les hommes et plus d’un tiers chez les femmes sont considérés comme non curable au diagnostic. A ce stade de la pathologie, les objectifs de contrôle de la maladie laissent progressivement place à des objectifs d’amélioration de la qualité de vie. Or, la prévalence et le poids des symptômes augmente avec l’évolution de la maladie. Ceci impactant négativement la qualité de vie des patients et entrainant une polymédication non souhaitable. En effet, cette polymédication est potentiellement responsable d’effets indésirables et d’interactions médicamenteuses délétères pour la qualité de vie du patient. De ce fait, la littérature scientifique s’intéresse de plus en plus au contexte de polypalliation : l’idée qu’un traitement unique puisse, par ses effets pharmacologiques, permettre le traitement de plusieurs symptômes en même temps. Ceci a particulièrement émergé suite à la définition de clusters de symptômes, à savoir l’interaction potentielle de symptômes partageant une épidémiologie commune, tels que le cluster anorexie-cachexie ou encore le cluster neuropsychologique. La Mirtazapine est un antidépresseur tétracyclique dont les effets in-vitro sur des récepteurs tels que les récepteurs HT3 et H1 laissent supposer une efficacité clinique sur des symptômes aussi variés que les nausées, l’anorexie, la dépression, la dyspnée ou encore les troubles du sommeil. Or, les données de la littérature restent peu claires par rapport aux effets réels et à la sécurité de ce traitement pour la palliation de divers symptômes en situation de cancers avancés. Nous avons donc effectué une revue systématique de la littérature afin d‘identifier les symptômes pour lesquels cette thérapeutique peut être pertinente dans la prise en charge des patients atteints de cancers avancés. Celle-ci a permis le développement d’une étude contrôlée-randomisée pour évaluer l’efficacité de la Mirtzapine comparativement à un autre antidépresseur (l’Escitalopram) dans la prise en charge de la polysympomatologie associée au cancer avancé. Le protocole publié de cette étude est rapporté dans ce manuscrit. Enfin, il serait incomplet à l’heure actuelle de traiter de la question des cancers avancés sans considérer les spécificités des nouvelles techniques thérapeutiques qui challengent ce concept : nouvelles techniques chirurgicales, de radiologie, de radiothérapie ou de thérapies systémiques. Pour prendre en considération un domaine où existe cette spécificité, nous sommes appuyés sur le modèle de la prise en charge de la carcinose péritonéale. Dans un premier temps, nous avons tenté d’identifier l’épidémiologie d’un cluster de symptômes (le cluster neuropsychologique) aux cours des prises en charge chirurgicales de la carcinose péritonéale afin de proposer un modèle d’intervention pour améliorer les résultats pour le patient et le système de santé. L’intervention proposée devra faire l’objet d’une évaluation afin d’en connaitre l’efficacité et l’implémentabilité
Despite increasing progress in screening and treatment, it is estimated that 2.7 million new cancer cases are diagnosed annually in Europe. Over half of these cases in men and more than a third in women are considered incurable at diagnosis. At this stage, the goals shift from disease control to improving the quality of life. However, during the course of the disease, the prevalence and impact of symptoms in advanced cancer negatively affect patients' quality of life and lead to undesirable polypharmacy. Indeed, this polypharmacy can potentially cause adverse effects and detrimental drug interactions for the patient's quality of life. As a result, the scientific literature is increasingly interested in poly palliation, the idea that a single treatment could, through its pharmacological effects, address multiple symptoms simultaneously. This concept has particularly emerged following the definition of symptom clusters, which involve the potential interaction of symptoms sharing a common epidemiology, such as the anorexia-cachexia cluster or the neuropsychological cluster. Mirtazapine is a tetracyclic antidepressant that, based on in vitro effects on receptors such as HT3 and H1 receptors, suggests clinical efficacy in various symptoms such as nausea, anorexia, depression, breathlessness, and sleep disorders. However, the literature data remain unclear regarding the actual effects and safety of this treatment for alleviating various symptoms in advanced cancer. Therefore, we conducted a systematic literature review to identify the symptoms for which this therapy may be relevant in the management of patients with advanced cancer. This review led to the development of a controlled randomized study to evaluate the efficacy of Mirtazapine compared to another antidepressant (Escitalopram) in managing the poly-symptomatology associated with advanced cancer. The published protocol of this study is reported in this manuscript. Finally, it would be highly reductionist at this stage to overlook the advent of new therapeutic techniques that challenge the concept of advanced cancer. To address this, we relied on the management model of peritoneal carcinomatosis to attempt to identify the epidemiology of a symptom cluster (the neuropsychological cluster) during the surgical management of peritoneal carcinomatosis. This allowed us to propose an intervention to improve outcomes for the patient and the healthcare system. The proposed intervention needs to be evaluated to determine its effectiveness and implementability

Breast cancer is the most common female cancer worldwide and the incidence is increasing. Due to advances in diagnosis and treatment, the number of women surviving breast cancer is also increasing. Those living with and beyond a breast cancer diagnosis need access to a wide variety of information and support which may vary depending on their circumstances. Breast care nurses (BCNs) are well recognised by Australian breast cancer patients for the information and support they provide. However, even though the BCN role has existed within the Australian healthcare system since the 1990’s very little national research has reported on their role, including their different geographical work contexts. The Professional Navigation Framework, used in Canada, provided a useful theoretical framework to inform exploration of these gaps in service to breast cancer patients.

Introdução: Com o aumento dos casos de câncer no mundo, instrumentos validados e confiáveis para avaliação das necessidades de cuidados de suporte a pacientes oncológicos são fundamentais para o oferecimento de serviços adequados a pessoas com câncer. Objetivo: Analisar evidências de validade da versão brasileira do Supportive care needs survey - short form 34 (SCNS-SF34) para avaliar necessidades de cuidados de pacientes oncológicos atendidos em Manaus. Método: Estudo psicométrico, com amostra de conveniência composta por 691 pacientes adultos com câncer, atendidos na Fundação Centro de Controle de Oncologia do Estado do Amazonas (FCECON), no período de Abril a Julho de 2016. A fonte de informação para a coleta dos dados foi um formulário com dados sociodemográficos e clínicos e a versão brasileira do Instrumento SCNS-SF34. A amostra foi composta por 691 pacientes, divididos em duas subamostras (Amostra A=350 e Amostra B=341) para as análises psicométricas, de modo a garantir pelo menos 10 pacientes para cada item do SCNS-SF 34 nas análises de constructo. O teste t Student foi usado para a comparação de médias das variáveis sociodemográficas e clínicas (sexo, grupo etário, tempo de tratamento) com a pontuação total da escala SCNS-SF34. Análises fatoriais, exploratória (AFE) e confirmatória (AFC), foram realizadas para a validade de constructo. Para o cálculo da consistência interna foi realizado o alfa de Cronbach. Foi feita análise de invariância do modelo fatorial em função do gênero (masculino vs feminino), do grupo etário (adultos vs idosos) e tempo de tratamento ( 6 vs 6 meses). A análise da validade convergente do SCNS-SF34 foi realizada com o índice Katz para atividade de vida diária. As análises foram realizadas por meio dos softwares Factor 10.3, MPLUS 7.3 e SPSS v22. Resultados: Do total de 691 pacientes, 92.6% eram provenientes do Estado do Amazonas, dos quais 68,2% da cidade de Manaus. A maioria era do sexo feminino (72.6%), com idade < 60 anos, (64.4%), média de 53.7 + 13.28 anos, viviam com companheiro (54.5%) e não necessitavam de cuidadores (55.3%). O tumor mais frequente foi localizado no sistema reprodutor masculino e feminino (55.6%), com predomínio do câncer de mama feminino (33.9%), seguido pelo sistema digestório (17,7%), com os tumores de estômago (6.3%). Quanto ao tratamento, a maioria dos pacientes foi submetida à cirurgia (56.1%) e à Quimioterapia (60.8%); o tempo de diagnóstico e de tratamento seis meses foi de, respectivamente, 74.4% e 54.4% pacientes. A média da pontuação total da escala foi de 76,06 + 23,50, mínimo de 35 e máximo de 170, sendo que pacientes adultos apresentaram maior necessidade de cuidados do que idosos, respectivamente, 77.7 + 23.9 e 72.97 + 22.74 pontos (p=0,010). Segundo SCNS-SF34, os pacientes apresentaram baixa necessidades de cuidados de suporte. Após as AFE e AFC a escala ficou formada por 34 itens e quatro domínios: Físico e vida diária (itens 1-5), Psicológico (6-14 e 17) e Sexualidade (15, 16 e 31); os itens 18 e 19 foram agrupados no domínio denominado Cuidado e Suporte (21-30 e 32- 33). Os índices de ajustamento obtidos por meio da AFC para o novo modelo (X2 = 1828,981; df = 520; X2/df = 3,51, p<0,001; CFI = 0,926; TLI= 0,918; RMSEA = 0,084 (I.C. 90%= 0,082 - 0,090) foram classificados como bons. A análise da invariância entre os diferentes grupos (sexo, grupo etário e tempo de tratamento) mostrou-se invariante para todos os grupos, sem prejuízo nos índices em nenhum dos níveis da invariância. A validade convergente entre os domínios do SCNS-SF34 e Índice de Katz para atividade de vida diária foi estatisticamente significante. Conclusão: O SCNS-SF34, composto por quatro domínios e 34 itens, mostrou-se um instrumento com boas evidências de validade e precisão para medir as necessidades de cuidados de pacientes com câncer atendidos na cidade de Manaus, Amazonas, independente do sexo, grupo etário e tempo de tratamento. No entanto, a estrutura fatorial encontrada ainda é passível de aprimoramentos para o melhor ajustamento do modelo.
Introduction: With the increase of cancer cases worldwide, validated and reliable instruments to assess care needs of oncologic patients are fundamental in offering proper services to people with cancer. Objective: To analyze evidence of validity of the Brazilian version of the Supportive Care Needs Survey - Short Form 34 (SCNS-SF34) in assessing the oncological healthcare needs of patients assisted in Manaus. Methods: A methodological study with a convenience sample composed of 691 adult cancer patients, assisted at Fundação Centro de Controle de Oncologia do Estado do Amazonas (FCECON), from April to July 2016. The source of information for the data collection was a form with sociodemographic and clinical data, as well as, the SCNS-SF34 survey approved for Brazilian Portuguese. For the sample, 20 patients were considered for each item of SCNS-SF34. A total of 691 patients were divided into two sub-samples (Sample A=350 and Sample B=341) for the psychometric analysis. The t student test was used to compare sociodemographic and clinical variables (sex, age group, treatment time) and SCNS-SF34 total score. Exploratory factor analysis (EFA) and Confirmatory factor analysis (CFA) were performed by using statistical software FACTOR 10.3. In order to calculate internal consistency, the Cronbach\'s alpha was performed and the statistical software Mplus 7.3 was used to evaluate the invariance of the factorial model across gender (male vs female), age group (adult vs elderly) and length of treatment ( 6 vs 6 months). The convergent validity analysis of SCNS-SF34 was performed with the Katz index for daily life activity. Results: Out of 691 patients, the majority (92.6%) were from the state of Amazonas, of which 68.2% were from the city of Manaus. The patients were female (72.6%), with an age < 60 (64.4%), a mean age 53.7 ± 13.28, lived with companion (54.5%) and did not need caregivers (55.3%). The most frequent tumor was located in the male and female reproductive systems (55.6%), with the predominance of female breast cancer (33.9%), followed by the digestive system (17.7%) with tumors of the stomach (6.3%). Regarding treatment, the majority of patients underwent surgery (56.1%) and chemotherapy (60.8%), and the diagnostic and treatment time six months was, respectively, 74.4% and 54.4%. The total mean score of the scale was 76.06 ± 23.50, with a minimum of 35 and a maximum of 170, given that adult patients had a higher need for care than the elderly, respectively, 77.7 ± 23.79 and 72.97 + 22.74 points (p = 0.010). According to the SCNS SF-34 the patients presented low level of supportive care needs. After EFA and CFA, the scale consisted of 34 items and four domains: Physical and daily life (items 1-5), Psychological (6-14 and 17) and Sexuality (15, 16 and 31). The items 18 and 19 were grouped into the domain called Care and Support (21-30 and 32-33). The adjustment indexes obtained through the AFC for the new model (X2 = 1828,981; df = 520; X2/df = 3,51, p<0,001; CFI = 0,926; TLI= 0,918; RMSEA = 0,084 (I.C. 90%= 0,082 - 0,090) were classified as good. The invariance analysis across the different groups (sex, age group and treatment time) was invariant for all groups, without affecting the indices at any of the levels of invariance. The convergent validity between the domains of SCNS-SF34 and Katz Index for daily life activity was statistically significant. Conclusion: The SCNS SF-34, composed by four domains and thirty-four 34 items, has proved to be a valid and reliable instrument to measure the healthcare needs of cancer patients assisted in the city of Manaus, Amazonas, regardless of sex, age group and treatment time. However, the factor structure found is still capable of improvements to the best fit of the model. The use of the SCNS-SF-34 in the clinical settings can contribute to improve the quality of care for this group of patients.

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Um número desconhecido de pacientes com câncer experimenta reações e interações de drogas graves, podendo resultar em hospitalização e até em morte. Particularmente, pacientes portadores de neoplasia maligna comumente recebem um grande número de medicamentos, além de receberem drogas com alto risco de efeitos adversos. Desta forma, dois estudos foram realizados como base para esta tese: uma revisão sistemática e em estudo retrospectivo. A revisão sistemática da literatura avaliou os estudos publicados sobre a epidemiologia de interações medicamentosas em pacientes com câncer. A busca identificou 8 estudos: 7 artigos publicados no PubMed e um resumo publicado nos proceedings do congresso da sociedade americana de oncologia (ASCO). A maioria dos estudos era retrospectiva e avaliou potenciais interações medicamentosas, com apenas dois estudos publicados sobre reais interações medicamentosas. Aparentemente, um terço dos pacientes oncológico ambulatoriais recebe combinações de drogas com risco de interação. Os principais fatores de risco para interações medicamentosas são: idade avançada, número crescente de medicações, presença de lesões cerebrais (primárias ou secundárias) e pacientes que recebem drogas consideradas de risco como anticonvulsivantes, varfarina e anti-inflamatórios hormonais e não-hormonais. O segundo estudo desta tese avaliou a prevalência de potenciais interações medicamentosas entre pacientes com câncer terminal. Desta forma, nós revisamos retrospectivamente os prontuários de todos os pacientes com câncer que foram atendidos no ambulatório de Cuidados Paliativos, do Hospital Princess Margaret, Toronto, Canadá, num período de 8 meses. As listas de medicações foram rastreadas para interações pelo programa eletrônico Drug Interaction Facts, que classifica as interações por nível de gravidade (maior, moderada e menor) e evidência científica (1 a 5, onde 1 = maior nível de evidência). Dentre os 372 pacientes avaliados, 250 interações medicamentosas potenciais foram identificadas em 115 pacientes (31%, 95% Intervalo de Confiança 26 - 36%), predominantemente envolvendo varfarina e fenitoína. A maioria das potenciais interações foi classificada como de gravidade moderada (59%) e 41,5% possuíam níveis de evidência 1-3. Na análise multivariada, idade crescente (p<0,001), pelo menos uma comorbidade (p=0,001), tipo de câncer (tumores cerebrais, p<0,001) e número crescente de medicamentos utilizados (p<0,001) foram associados a risco de interações medicamentosas. Portanto, concluiu-se que potenciais interações medicamentosas são comuns entre pacientes oncológicos que estejam recebendo cuidados de suporte exclusivos, sendo que a maioria envolve varfarina e/ou anticonvulsivantes. Fatores de risco incluem idade avançada, pacientes com múltiplas comorbidades, tumores cerebrais e aqueles que utilizam muitas medicações.
Background: Drug-drug interactions (DDIs) comprise an important problem in medical oncology practice. We systematically reviewed the frequency of DDIs in oncology. Methods: We searched PubMed for eligible articles and online databases abstracts of major oncology meetings. Results: Eight studies reported on the frequency of DDIs: six evaluated the frequency of potential DDIs while 2 studies reported on real DDIs, i.e. interactions that had clinical consequences. Studies of potential DDIs found that approximately one third of patients are exposed to dangerous drug doublets, with the most common ones involving warfarin and anticonvulsants. One study of real DDIs found that 2% of hospitalized cancer patients had a DDI as the cause of admission. Conclusion: Drug interactions comprise an important issue in oncology, with approximately one third of ambulatory cancer patients being at risk of DDIs. Data are limited on the clinical consequences of drug interactions among cancer patients.
TEDE
BV UNIFESP: Teses e dissertações

Le diagnostic de cancer et les traitements associés vont entrainer un bouleversement de la vie du patient mais aussi de son entourage, et en particulier des proches-aidants. Ces derniers devenant « aidant » doivent assumer de nouvelles responsabilités qui peuvent entrainer des problèmes de santé, une altération de leur qualité de vie et ainsi de manière générale des difficultés d’ajustement face à la maladie (e.g., altération du fonctionnement émotionnel, physique, social et professionnel, symptômes somatiques, détresse émotionnelle). Les proches-aidants ont ainsi besoin du soutien des professionnels de santé pour faire face à leur rôle d’aidant mais ils rapportent souvent des besoins en soins de support insatisfaits. Ce travail de thèse, inscrit dans un programme de recherche plus global, vise ainsi à mieux appréhender les besoins en soins de support des proches-aidants de patients atteints d’un cancer et leurs déterminants, à travers notamment l’implication des processus émotionnels. La première étude de ce travail a consisté à valider en français une échelle évaluant les besoins en soins de support des proches-aidants de patients atteints d’un cancer. La deuxième étude visait à déterminer des profils de proches-aidants plus à risques d’avoir au moins un besoin en soins de support insatisfait moyen ou fort selon des facteurs intrapersonnels (i.e., symptômes anxieux-dépressifs) et sociodémographiques et médicales (e.g., âge des patients et des proches-aidants, cancer métastatique ou non). Enfin, la troisième étude visait à tester le modèle théorique, validé en amont auprès des patients, selon lequel les compétences émotionnelles des proches-aidants auraient un effet bénéfique sur leurs besoins en soins de support insatisfaits via moins de symptômes anxieux-dépressifs. Ces résultats montrent l’importance de dépister et prendre en charge les besoins en soins de support des proches-aidants, surtout liés à la prise en charge du patient, à l’information et au soutien psychologique et émotionnel. Certains profils de proches-aidants pourraient représenter une population particulièrement à risques de difficultés qui nécessiteraient une attention particulière des professionnels de santé. Enfin, tenir compte des processus émotionnels, notamment des compétences émotionnelles et des symptômes anxieux-dépressifs, parait important pour la prise en charge en soins de support des proches-aidants
Cancers causes a disruption in the lives of patients and their caregivers. They must assume new responsibilities that can lead to health problems, altered quality of life, and adjustment difficulties (e.g., impaired emotional, physical, social, and professional functioning, somatic symptoms, emotional distress). Thus, caregivers need support from health professionals to cope with their role but they frequently report unmet supportive care needs. This thesis work is a part of a more global research program and aims to better understand the supportive care needs of caregivers of cancer patients and their determinants, in particular through emotional processes. The first study of this work validated the French version of a scale assessing the unmet supportive care needs of caregivers of cancer patients. The second study identified profiles of caregivers at higher risk of having at least one moderate or high unmet supportive care need from intrapersonal factors (i.e. emotional distress) and socio-demographic and medical variables (e.g., age of patients and caregivers, metastatic cancer). Finally, the third study tested the theoretical model of the thesis work, already validated for cancer patients, which considers that the emotional competence of caregivers can reduce their unmet supportive care needs by reducing their anxiety and depression symptoms. The results highlight the importance of identifying and addressing the unmet supportive care needs of caregivers, especially related to cancer care, information, and psychological and emotional support. Some profiles of caregivers may represent a population at higher risk of having difficulties and requiring more attention from professionals. Finally, taking into account emotional processes, including emotional competence and anxiety and depression symptoms, may be essential in the supportive care of caregivers

This study was designed to explore how Chinese families managed the care of an adult member with advanced cancer both in home and hospital settings, to identify factors that affected care management, to examine the influence of cultural beliefs and practices on caregiving, and to examine the preference for location of care, from the perspective of one family member. The method used in conducting this study was the grounded theory approach of qualitative research. Data were collected through a series of interviews with six Chinese informants (five adult children and one spouse). The initial interviews were guided by the research questions. Constant comparative analysis was employed throughout data collection to permit analytic material to guide and focus the process of constructing the core social process. The informants' degree of ethnic identity was measured using the Ethnic Identity Questionnaire to further validate the researcher's observations pertaining to cultural orientation. The results indicated that Chinese families managed the care of an adult member with advanced cancer through the balancing process. This process, used when patients were in hospital and home, characterized the struggle the families experienced in managing everchanging caregiving demands and everyday family demands. Balancing was comprised of four interrelated management strategies: gauging, anticipating, sharing the load, and resourcing. It was concluded that the process is not culturally-bound although activities of trying out and patterns of help-seeking were thought to be culturally based. Factors which were found to influence the balancing process were past experiences and the patients' and family members' style or previous patterns of coping. Cultural beliefs influenced family members' actions and the reasons given for their actions. The results also indicated that Chinese families preferred care at home to care in the hospital. However, care at home was contingent on four factors: availability and ability of caregivers, family support, information from physician, and patients' physical condition and symptom management. The hospital setting was identified as the place where the ill family would die. In terms of nursing practice, the results support the need for nurses to be family-focused and support the actions of family members as the families manage the care. The results also suggest nurses to explore their own beliefs as well as beliefs of patients and families to ensure sensitivity is shown to differences. The findings reinforce the importance of educating families, as well as other health care professionals, about nursing's role in providing care, especially in the community. With regard to nursing research, the results reinforce the need to conduct family unit research and further explore the validity of the balancing process with more Chinese families and other ethnic groups.
Applied Science, Faculty of
Nursing, School of
Graduate

La surexpression du récepteur du facteur de croissance épidermique humain (HER2) dans le cancer du sein est de mauvais pronostic. La thérapie ciblée par trastuzumab améliore la survie globale des patientes mais est associé à une cardiotoxicité, avec notamment une diminution de la fraction d'éjection ventriculaire gauche (FEVG). L’objectif de ce travail de thèse a été d’étudier, chez des patientes suivies en oncologie médicale pour un cancer du sein HER2-positif, traitées exclusivement par trastuzumab, les effets d’un programme de réentrainement à l’effort, individualisé (12 semaines, 55 minutes, 3 fois/semaine), sur cycloergomètre, combinant des intensités modérées et élevées, d’une part sur la toxicité cardiaque, évaluée par la FEVG et la déformation longitudinale du ventricule gauche (DLVG) grâce à une échographie cardiaque et d’autre part sur les adaptations physiologiques à l’exercice, la fatigue, la douleur et la qualité de vie relative à la santé (QdVS). Cinquante-huit patientes ont été randomisées en deux groupes : contrôle (GC ; n=28 ; 49,9 ± 9 ans) et entrainé (GE ; n=30 ; 50,4 ± 7,8 ans). Toutes les variables ont été analysées en pré (T0), en post-intervention (T3) et 3 mois après celle-ci (T6). À T0, la VO2 pic (mL.min-1.kg-1), mesurée par une épreuve d’effort incrémentée, maximale, est faible dans les deux groupes (GE : 24,7 ± 1,4 et GC : 23,8 ± 1,3) sans que la différence ne soit significative. À T3, la FEVG et la DLVG n’ont pas diminué significativement, comparées aux valeurs basales (T0). De plus, le pourcentage de patientes n’ayant pas présenté de toxicité cardiaque est plus important dans le GE (89,3%) que le GC (84%) et chez celles qui ont développé une cardiotoxicité (n=7) la FEVG a diminué de 10,8% à T3. Par ailleurs, la puissance maximale (PM), la VO2 pic et le VO2/FC maximal sont significativement améliorés et les seuils d’adaptation ventilatoire (SV1) et de désadaptation ventilatoire (SV2) sont atteints pour des puissances et VO2 plus élevées dans le GE. En dépit d’une PM plus élevée, la lactatémie de fin d’effort n’est pas significativement différente, témoin d’une moindre acidose métabolique. Les intensités d’entrainement ont augmenté passant de 70 à 87 W en base et de 92 à 110 W au pic. Par ailleurs, les scores de la fatigue générale et physique, de l’interférence et de l’intensité de la douleur sont diminués et ceux de la QdVS sont plus élevés dans le GE. Les augmentations de PM et de VO2 pic sont associées à une moindre fatigue générale et à une plus faible interférence de la douleur et à une meilleure QdVS. Enfin, ni la PM, ni la VO2 pic sont associées à l’augmentation des scores des différentes dimensions du QLQ-C30, excepté l’âge qui est significativement associé à la dimension « fatigue » (OR : 0,081 ; IC95% [0,007-0,893] ; p<0,04). Ainsi, les patientes de plus de 50 ans ont plus de risque d’augmenter leur fatigue.À T6, bien que certaines variables soient légèrement diminuées par rapport à celles mesurées à T3, elles restent supérieures à celles observées à T0. Nos résultats démontrent qu’un programme d’entrainement encadré de 12 semaines est une stratégie efficace qui limite la toxicité cardiaque du trastuzumab, les capacités cardiorespiratoires et métaboliques à l’exercice, diminue la fatigue, la douleur et in fine améliore la qualité de vie des patientes atteintes de cancer du sein. Ces bénéfices ont été retrouvés 3 mois après l’intervention. L’AP doit ainsi faire partie intégrante des soins oncologiques de support pendant et après les traitements
Overexpression of the human epidermal growth factor receptor 2 (HER2) in breast cancer is associated with poor prognosis. Trastuzumab improves overall survival but it is associated with cardiotoxicity, including a decrease in left ventricular ejection fraction (LVEF). The objective of this thesis work was to evaluate, in patients followed in medical oncology for HER2-positive breast cancer, and treated exclusively with trastuzumab, the effects of a supervised, tailored exercise program (55 minutes, 3 days/week, 12 weeks), combining moderate and high intensities, on cardiotoxicity, as assessed by LVEF and left ventricular longitudinal deformation (LVLD) measured by echocardiography; and on cardiorespiratory fitness, fatigue, pain and health-related quality of life (HRQoL). Fifty-eight patients were randomized into two groups: control (CG, n=28, 49.9±9 years) and training (TG, n=30, 50.4±7.8 years). All variables were analyzed pre- (T0) and post-intervention (T3) and 3 months later (T6). At T0, VO2 peak (mL.min-1.kg-1), measured by a maximal graded exercise, was low in both groups (GE: 24.7 ± 1.4 and GC: 23.8 ± 1.3) without the difference being significant. At T3, LVEF and LVLD did not decrease compared to baseline values. The percentage of patients who did not have cardiac toxicity was greater in the TG (89.3%) than in the CG (84%). In those who developed cardiotoxicity (n=7), LVEF decreased by 10.8% at T3. Maximal workload (MW), VO2 peak and VO2/HR were greater compared to values recorded at T0. Training improves aerobic capacity highlighted by delayed onset of both ventilatory thresholds with higher average workload and VO2 in the TG. Lactatemia was not significantly different but the MW was greater than those developed in pre-training, indicating lower metabolic acidosis. Training intensities increased from 70 to 87 W at base and from 92 to 110 W at peak. In addition, scores for general and physical fatigue, interference and pain intensity decreased, and those for HRQoL increased. Improvements in MW and VO2 peak were associated with less general fatigue, lower pain interference and better HRQoL. Finally, no variable was associated with the scores of the various dimensions of the QLQ-C30, except for age, which was significantly associated with the "fatigue" dimension (OR: 0.081, 95% CI [0.007-0.893]; p<0.04). Accordingly, patients over 50 years old are more likely to feel increased fatigue. At T6, although some variables were slightly lower than those measured at T3, they remained higher than those observed at T0.Our results demonstrate that patients with HER2-positive breast cancer undergoing adjuvant trastuzumab tolerated the exercise training well, without side-effects. Furthermore, this supervised exercise program is an effective strategy to limit the cardiac toxicity of trastuzumab. Moreover, training improves cardiorespiratory and metabolic capacity during exercise (maximum and sub maximal), reduces fatigue and pain, and ultimately improves the quality of life of breast cancer patients. These beneficial effects were prolonged 3 months after the intervention. Tailored training may therefore provide additional benefits on top of the usual cancer treatment and prevent exacerbations of physiological toxicities that occur as a result of treatment

Women’s perceptions of the support that they received during labour and delivery is the focus of this study. Its purpose is to document a sampling of women’s experiences with supportive care during childbirth. Vivid descriptions from the women provided information on when support was most essential, the types and levels of support that they required, and from whom. The interviewees were eight primiparous women who gave birth at the same labour, delivery, recovery, and postpartum (LDRP) unit in a major metropolitan hospital, and who were supported by teams that they had chosen. Each woman had her husband present and an LDRP nurse assigned to care for her. Each participated in one open-ended, semi structured interview, conducted at her home; all interviews were audio taped, transcribed verbatim, and analyzed for themes and patterns. A qualitative, interpretive, descriptive methodological approach included theoretical and snowball sampling. The outcome of this study indicates that there are intricacies surrounding the various kinds and degrees of supportive care that women require and receive during childbirth, and that meaningful support is multifaceted. Supporting women during childbirth is complex, as each woman and her supportive team are unique and come to the LDRP unit with their own distinctive dynamics. Among the predictors of a quality birth experience is the woman’s capacity for self-support, along with the support team’s mindfulness that she may need to draw on her inner strength, and that her requirements for support might change from one moment to the next. Some of the contextual factors of effective supportive care during childbirth include: the woman’s sense of having some control over the experience of labour and delivery; her inner strength and confidence; privacy; intuitiveness of the support team; and the encouragement, compassion, and empathy of supporters. The results of this study demonstrate the need for further exploration of the supportive care that women receive during childbirth. To help gain a better understanding of the support needs of all women, research should take in women from other cultures and lower socioeconomic backgrounds, those with high-risk complications, women who do not have partners, and those living with abusive partners or otherwise enduring unusual hardships.

Background: Evidence suggest that for people living with cancer and dementia the exploration of memory loss is superficially based upon patient or carer disclosure. Patients tend to underplay the importance and extent of memory problems in cancer consultations and staff found assessment challenging, avoiding exploring memory without an obvious therapeutic gain. Compared to cancer patients without dementia, people treated for cancer with pre-existing dementia are diagnosed at a later or unknown stage, receiving less treatment with more treatment complications and poorer survival. This highlights the challenge for carers in advocating and negotiating treatment choices with their relative. Aim: To examine the challenges of informal carers supporting someone with cancer and dementia within the United Kingdom Methods: In depth interviews were conducted with 7 informal carers using a narrative approach to examine the construction of their experiences. Recruitment took place at a Psycho-oncology unit at a tertiary cancer centre in the north west of England between July 2014-March 2015. Two participants were recruited external to the NHS through snowballing techniques. Both NHS and University ethical approval was obtained. Results: The findings demonstrate how informal carers navigate a path through complex cancer treatments and support their relative. A cancer diagnosis often requires multiple treatment visits to an oncology centre and this can be challenging for carers. They find that they need to co-ordinate and manage both health professionals and their care recipient(s) in terms of getting access to appropriate services and support. This process can be particularly challenging in the presence of a cognitive impairment that often demands effective communication with different agencies. Carers frequently experienced multiple challenges include dealing with the stigma that is characteristic of the dementia experience and the added complexity of negotiating this within a cancer care context. Issues of decision-making, best interests and quality of life were also of central concern for carers. Conclusions: Carers within this particular context face complex challenges that are not necessarily obvious and appear under reported. Their role is often rendered invisible by the nature of the care recipients’ condition. We suggest health professionals need to respond to and support carers in different ways that do not stigmatise and hence discriminate against them.

Introduction : Les cancers hématologiques sont de survenues brutales et nécessitent des traitements agressifs, notamment de la chimiothérapie intensive et parfois des greffes de cellules souches hématopoïétiques. Les répercussions induites par le cancer et ses traitements sont responsables d’une altération majeure de la qualité de vie, autant qu’une fatigue chronique et des difficultés de réadaptation sociales et professionnelles. Les programmes d’Activité Physique Adaptée (APA) en hématologie ont montré leur efficacité sur l’état physique et la fatigue principalement mais restent peu concluants sur les dimensions psycho-émotionnelles de la qualité de vie. Des recherches récentes en neuro-cardiologie ont par ailleurs montré les bénéfices d’un entraînement à la Cohérence Cardiaque (CC) sur l’équilibre du Système Nerveux Autonome (SNA) et sur l’état psycho-émotionnel. Méthode : Les travaux de recherche entrepris dans cette thèse ont pour objectifs d’évaluer les effets d’une intervention non-médicamenteuse sur la qualité de vie de patients adultes en post-traitement d’une hémopathie maligne. La récupération d’un équilibre physiologique est indexée par la Variabilité de la Fréquence Cardiaque (VFC), reconnue comme une fenêtre d’observation du SNA. Nous présentons quatre études : une étude expérimentale auprès de sujets sains pour mieux comprendre les mécanismes de la VFC lors d’une respiration lente et profonde ; une étude de faisabilité portant sur la mise en œuvre d’un programme APA en hématologie ; puis les résultats préliminaires d’un essai contrôlé randomisé évaluant les effets d’un programme combinant APA et CC sur la VFC, la qualité de vie, la fatigue et l’état anxiodépressif ; et enfin une étude qualitative évaluant le déroulement du programme et les effets des deux interventions. Résultats : Nos résultats montrent d’abord la faisabilité de l’APA et de la CC chez ces patients. Même si les résultats portant sur l’analyse de la VFC sont difficiles à interpréter avec précision, ils tendent à confirmer qu’une intervention en CC entraîne une stimulation du tonus vagal. L’évaluation qualitative nous apporte de nombreux éléments déterminants dans l’adéquation entre les interventions et les besoins singuliers des patients et dans leur efficacité sur l’optimisation d’un retour à une vie active et autonome. Discussion : Ces travaux de recherche apportent par de nouveaux faits expérimentaux, des éléments supplémentaires dans la compréhension des mécanismes de la CC et de ses applications en milieu clinique. D’autres expérimentations sont encore nécessaires pour approfondir nos connaissances dans le cadre d’une approche psychophysiologique en APA et cancer
Introduction: Hematologic malignancies require aggressive treatment, including intensivechemotherapy and sometimes hematopoietic stem cell transplantation. The repercussions of cancer and its treatment is recognized for their significant long-term adverse effects on health-related quality of life. As a part of cancer treatment, physical exercise is known to improve mainly physical functioning and fatigue, but there are still questions regarding its impact on psychological and emotional functioning. Nonetheless, heart rate variability biofeedback (HRVB) is recognized for its positive effects on autonomic nervous system balance and emotional self-regulation. Recent research in neurocardiology has shown the benefits of Cardiac Coherence (CC) training on the autonomic balance and the psycho-emotional state. Method: The objectives of the research undertaken in this thesis are to evaluate the effects of a nonpharmacological intervention on quality of life in adult hematologic patients in post-treatment time. The recovery of physiological balance is indexed by the Heart Rate Variability (HRV), which is recognized as a window of the Autonomic Nervous System (ANS). We present four studies: an experimental study in healthy subjects to better understand the mechanisms of HRV during slow and deep breathing; a feasibility study on the implementation of an APA program in hematology; preliminary results of a randomized controlled trial evaluating the effects of a program associating APA and CC on HRV, quality of life, fatigue and anxiety-depression; and a qualitative study evaluating the program’s implementation and the effects of the both interventions. Results: Our results first show the feasibility of APA and CC in these patients. Although the results of the HRV analysis are inconclusive, they tend to confirm that CC intervention results in stimulation of vagal tone. Qualitative evaluation provides us with many important insights into the appropriateness of the interventions to the specific needs of the patients and their effectiveness in optimizing a return to the active daily life. Discussion: This research provides new experimental evidence in understanding the mechanisms of cardiac coherence and its applications in the clinical setting. Further experimentation is still needed to deepen our knowledge in the context of a psychophysiological approach in APA on cancer

This grounded theory research explores patients' experiences and the supportive care implications of living with the incurable and progressive bone marrow cancer multiple myeloma. Patients (n=17), family members (n=11) and healthcare professionals (n=12) participated in the research. A total of 46 semistructured and recorded interviews were undertaken and transcribed verbatim (three couples were interviewed twice n=6). Some participants were interviewed individually while others were interviewed as a couple or small family group. The methodology employed aimed to generate theory in an area of limited qualitative exploration and findings were determined through the procedures of theoretical sampling and constant comparative analysis. 'Contention' was the core category that emerged in the form of 'struggle' with close affiliation to other prominent interrelating concepts such as 'battle' or 'fight', 'disruption' and 'disharmony'. The findings are described within four categories of 'Ways of communication', 'Nature of the disease', 'Impact on life' and 'Supportive care needs'. This research provides insight of individuals' life experiences living with a complex haematological malignancy that is poorly understood. Implications for practice relate to development of collaborative approaches to healthcare and the identification of supportive care needs. This work contributes increased awareness and understanding of multiple myeloma and the impact that the disease has on the individual and on family life. It also highlights the value of effective communication and collaboration between patients, families and healthcare professionals to identify supportive care needs at specific times along the illness trajectory and inform service provision and the development of effective care pathways. Indications for further research are included. A Family Self-Assessment Referral Plan and Model of Supportive Care, based on the research findings, are currently being developed in collaboration with patients, families, professionals and Myeloma UK.

Quality of care is conceptualised by professionals and in policy documents as: compliance with ‘best practice’ guidelines; improving satisfaction rates; fiscal efficiency; and ethical care. ‘Quality’ in palliative and supportive district nursing care has been conceptualised in all these ways. However, the empirical research in this area draws mostly on professionals’ and carers’ views with little research addressing patients’ views. With political rhetoric pushing for a ‘patient led’ NHS, research into how patients conceptualise quality in this area is necessary to both critique this rhetoric and/or facilitate its aims. Therefore, this research investigates patients’ and carers’ views on the quality of palliative and supportive district nursing care.Participants were recruited to an exploratory qualitative study resulting in a convenience sample of twenty six patients (all of district nursing caseloads) and thirteen carers. All participants were over eighteen, able to consent, lived in their own homes, were under the care of district nurses, and had palliative care needs. Eighteen participants had a cancer diagnosis, six had a non-malignant diagnosis, one had co-morbidities, and one participant did not disclosed their diagnosis. Semi-structured interviews were conducted with all participants, five participants were interviewed twice. Post-structuralist theories were used with discourse analysis techniques for the final analysis.The findings identify three of the most influential discourses in relation to the morality and quality of care: Firstly, ‘busyness’, and how its performance by district nurses masks patients’ and carers’ ability to critique care, instead producing a pseudo-quality which fixes patients and carers subjectivities. Secondly, ‘power/knowledge’ and the ways in which it prevents patients and carers accessing care which they need, and altering care to suit their needs. Thirdly, ‘the home’ and how it (re)forms district nursing care and district nursing care (re)forms the home; meaning that actions by district nurses must also consider the impact on the home as well as the patients and carers. In conclusion quality care may be produced by: ceasing to measure quality; involving patients and carers with commissioning and directing palliative and supportive care; supporting groups other than district nurses such as patients, carers and third parties to produce and distribute knowledge about district nursing care; increasing patients’ and carers’ ability to communicate with one another about their care.Further research may investigate: how patients and carers with palliative and supportive care needs may be involved in commissioning; the most appropriate wording and means to distribute knowledge about palliative and supportive district nursing care; ethnographic work to explore how district nursing and the home interact; more detailed theorisation of how the material and the discursive can be accounted for within post-structuralism.

Background: Losing an infant is difficult for parents to face. To improve EOL care for dying neonates and their families, NICU nurses need to overcome obstacles and implement supportive behaviors. Understanding the size of obstacles and supportive behaviors will better enable NICU nurses to provide quality EOL care. Objectives: To determine the largest obstacles and supportive behaviors in NICU EOL care. Methods: A descriptive quantitative study of a random national sample of 1058 NICU nurses who were members of NANN (National Association of Neonatal Nurses). The National Survey of NICU Nurses' Perceptions of End-of-Life Care questionnaire was mailed twice yielding 234 usable questionnaires for a response rate of 26%. Results: Three themes emerged in the top rated obstacles: (a) obstacles related to families, (b) obstacles regarding language and communication, and (c) obstacles concerning ethical dilemmas. The lowest rated obstacles were nurses believing that life-saving measures/treatments were prematurely discontinued and unit visiting hours being too liberal. The top eight supportive behaviors included helping families cope with the infant's death and those involving helpful physician behaviors. Lowest rated supportive behaviors were those related to the nurses' own family death experience and behaviors promoting nurse convenience. Conclusions: Obstacles and supportive behaviors for NICU EOL care have been identified. Issues regarding families, communication, and ethical dilemmas need to be addressed. Efforts should be made to more quickly align the plan of care with the projected outcome to limit both infant suffering and nurse distress from inappropriate use of life-extending measures.

As older adults live longer, demand for supportive care will increase. Older adults will need a form of long-term care to manage their health and quality of life. As older adults age, they’re susceptible to having one or more chronic conditions. In taking measures to manage the chronic conditions of many older adults, in-home supportive services is a supportive program that provides non-medical personal and instrumental services to help older adults with their activities of daily living. An in-home supportive service allows an older adult to receive assistance and remain comfortably living in his or her home. However, an older adult of low-income status may not receive this information on supportive services. Therefore, this study was designed to assess the level of awareness low-income older adults have on in-home supportive services. This research design was quantitative focusing on measuring the level of awareness among low-income older adults. A survey instrument was created and given to older adults at a senior center of the County of San Bernardino. IBM SPSS Manual on Windows Software was used to input and analyze data. The findings of the study found a low level of awareness of the program called In-Home Supportive Services (IHSS) and participants understanding of in-home supportive services was unclear. This study provides recommendations for social workers to address the barriers of low-income older adults acquiring information on in-home supportive services.

US asthma prevalence increased by five million in the last decade and health care spending for the disease increased from $53 billion to $56 billion. Children are more likely than adults to have an asthma attack and its estimated that 1-in-10 youth has asthma. Despite initiatives to promote adherence to practice guidelines, childhood asthma emergency room) visits, and hospitalizations remain steady while the number of asthma deaths have increased over a 17-year period. Preliminary studies find the majority of adolescents prefer smartphones as a means of education and guidance. A modified Technology Acceptance Model (TAM) survey was comprised of 15 statements that explored providers’ acceptance of smartphone applications (apps) as an adjunct strategy for management of asthma among adolescents in the outpatient setting. Current insight in adolescent asthma demonstrates multifaceted disparities in care stemming from biological and developmental transitions unique to adolescents. The quantitative, descriptive design of the project assessed two factors integral to the TAM related to provider acceptance and perception: 1) Perceived use (PU), and 2) Perceived ease of use (PEU). The survey sample consisted of 18 providers. Overwhelmingly, the majority of providers surveyed favored use of a smartphone app for adolescent asthma and believed apps had the potential to improve the quality of adolescent asthma management. Most participants agreed; smartphone apps might help accomplish benchmarks for adolescent asthma management. Numerous studies demonstrate adolescents’ preference for technological interventions for self-management of their asthma symptoms. The survey results reinforce the willingness of providers to accept asthma smartphone apps as a potential adjunct management strategy for adolescent asthma. Additional studies involving providers are required to further explore provider attitudes of acceptance and rejection relating to smartphone apps for chronic health conditions.

Improving access to care is not enough if it is not effectively delivered. Poor quality healthcare services have proven to slow progress to achieve better health outcomes and substantially increase the societal and economic burden of diseases. It is essential to provide healthcare services that constantly meet client-specific needs, which vary widely per individual, and to consider factors such as sociodemographic, psychological, health conditions. The emergence of digital technologies has played a critical role in the advancement of the healthcare sector. However, there remains critical knowledge-gaps demonstrating best practices to support digital health adoption and integration. The current research aimed to address this gap by making a case for providing a user-informed digital health model to improve Australians’ experience of melanoma post-treatment care. It captured information about the experience of care from a melanoma patient’s perspective and attitude toward digital health interventions. The data were collected through an online questionnaire developed based on clinical recommendations from melanoma guidelines and the literature. 95 patients were investigated, as well as their attitude toward digital health. Overall, 30% expressed difficulties accessing care due to geographical barriers, cost and time pressure. A majority presented signs of distress and desire for more educational and psychosocial support. The data also identified significant associations between access and psychological distress. Overall, participants reported positive attitudes toward the use of digital health, particularly if it can improve their quality of life. The findings showed that adapted uses of digital health could increase self-management and healthy behaviour; reduce psychological distress and social isolation; enable timely access to healthcare providers and communication, and support collaboration between clinicians. However, the study also reported a substantial lack of knowledge and awareness about technologies made available to melanoma patients. Recommendations on where to start and how we could encourage digital health uptake to provide high-quality, effective and adequate care are proposed. The thesis concludes on a call to action for healthcare stakeholders to ‘upgrade’ the existing melanoma healthcare system.

INTRODUCTION: The survival rate of preterm infants increased over the past few decades, posing a variety of challenges to the preterm infant due to the stark mismatch between the intra-uterine and extra-uterine environment they are prematurely exposed to. Neurodevelopmental Supportive Care (NDSC) is suggested to improve short and long term outcomes of the preterm infant. This method will make the biggest difference and prove most successful in severely challenged settings with little resources. PROBLEM STATEMENT: The problem in South Africa is that an average of 14.6% of infants are born of low-birth-weight and are at risk for developmental delays, but no Best Practice Guidelines (BPGs) for the NDSC of the preterm infant are available nationally or internationally, and therefore the aim of this study was to develop such BPGs. PURPOSE AND OBJECTIVES: This aim was achieved through four objectives: (1) To describe the components of NDSC by means of an Integrative Literature Review, (2) To develop a checklist (based on the description of the components) to assess the operationalisation of NDSC, (3) To conduct a situational analysis of the operationalisation of NDCS in public sector hospitals in South Africa (using the checklist, structured observation, key-informant interviews as part of the observation and field notes), and (4) To formulate BPGs for NDSC in the public sector hospitals in South Africa. METHOD: The research was performed in 3 stages, here discussed in 7 chapters. Stage one aimed to describe the components of NDSC by means of an ILR and stage two comprised a situational analysis of the operationalisation of NDSC in public sector hospitals in South Africa. RESULTS: The results from stage one and conclusion statements from stage two were synthesised to formulate BPGs in stage three. These BPGs were graded and recommendations for implementation were formulated. The final chapter of the research discusses the evaluation of the study, identifies limitations and suggests recommendations for nursing practice, education and research.
Thesis (Ph.D. (Nursing))--North-West University, Potchefstroom Campus, 2010.

US asthma prevalence increased by five million in the last decade and health care spending for the disease increased from $53 billion to $56 billion. Children are more likely than adults to have an asthma attack and its estimated that 1-in-10 youth has asthma. Despite initiatives to promote adherence to practice guidelines, childhood asthma emergency room) visits, and hospitalizations remain steady while the number of asthma deaths have increased over a 17-year period. Preliminary studies find the majority of adolescents prefer smartphones as a means of education and guidance. A modified Technology Acceptance Model (TAM) survey was comprised of 15 statements that explored providers' acceptance of smartphone applications (apps) as an adjunct strategy for management of asthma among adolescents in the outpatient setting. Current insight in adolescent asthma demonstrates multifaceted disparities in care stemming from biological and developmental transitions unique to adolescents. The quantitative, descriptive design of the project assessed two factors integral to the TAM related to provider acceptance and perception: 1) Perceived use (PU), and 2) Perceived ease of use (PEU). The survey sample consisted of 18 providers. Overwhelmingly, the majority of providers surveyed favored use of a smartphone app for adolescent asthma and believed apps had the potential to improve the quality of adolescent asthma management. Most participants agreed; smartphone apps might help accomplish benchmarks for adolescent asthma management. Numerous studies demonstrate adolescents’ preference for technological interventions for self-management of their asthma symptoms. The survey results reinforce the willingness of providers to accept asthma smartphone apps as a potential adjunct management strategy for adolescent asthma. Additional studies involving providers are required to further explore provider attitudes of acceptance and rejection relating to smartphone apps for chronic health conditions.

The goal of this study was to provide a link between the family-supportive benefits offered by an employer, and the work-family conflict experienced by that organization's employees. In order for employee outcomes such as job satisfaction to remain high, the work-family conflict experienced by the employee needs to remain low. One way to possibly lower the amount of work-family conflict experienced is to offer family-supportive benefits.

Die Studie evaluiert die Arbeit des Ambulanten Hospiz- und Palliativ-Beratungsdienstes (AHPB) am Hospiz Villa Auguste in Leipzig. Der AHPB betreut Palliativpatienten in der Häuslichkeit. Er versteht sich als Hilfe zur Pflegeüberleitung an Schnittstellen der Versorgung (z.B.: Krankenhaus - Entlassung nach Hause). Ziel der Studie war eine wissenschaftliche Begleitung der Arbeit des AHPB. Seine Struktur-, Prozess und Ergebnisqualität wurden evaluiert. Als ein Schwerpunkt der Studie wurde besonders die Rolle der Angehörigen in der häuslichen Versorgung betrachtet. Es wurde auch untersucht, welche Unterstützung sie von der Brückenschwester erfuhren. Im Rahmen der Interviews wurden sie zur Zufriedenheit mit dem Dienst befragt.

Background: Malignant cerebral glioma is a rare cancer but has a devastating impact on patients and their families. In Scotland each year, around 450 people are diagnosed with glioma. Prognosis is generally poor and treatment is essentially palliative. There is a growing recognition that non-clinical aspects of care for both patients and their families need to be acknowledged and integrated into health care provision in line with a patient-focused ethos of care. Currently, there is relatively little research exploring the psychosocial issues and needs of this patient group. Aims: To give patients being investigated for malignant cerebral glioma and their families the opportunity to describe their shared experiences of their illness journey and voice their concerns and unmet needs. To examine how these experiences and needs change over time as the patient progresses through the illness journey. To ascertain the extent to which these needs are recognised and supported, taking into accounts professionals’ views and making suggestions for steps forward in improving patients’ psychosocial care. Methods: A total of 80 qualitative prospective longitudinal interviews (30 paired and 50 separate) were conducted with 26 people with a suspected or confirmed diagnosis of malignant cerebral glioma being treated at a regional hospital and 24 primary relative/informal carers. Patients and carers were interviewed at the following five times: leading up to diagnosis; following a formal diagnosis; around the end of initial treatment (radiotherapy); at a designated six-month follow-up stage; and bereavement interviews with carers. One-off interviews were carried out with 66 health professionals (19 case-linked GPs and 47 other health, health-related and social care professionals involved in patients' care). Interviews were recorded and transcribed verbatim and analysed using the constant comparative method from a grounded theory approach assisted by QSR NVivo Version 7. Findings: Distress, anxiety and shock were overwhelming reactions in the period leading up to a diagnosis of glioma, making it difficult for participants to make sense of their experience. Over time, participants employed a range of strategies in order to cope with their diagnosis. Social and emotional support from professionals and friends, family and other patients were vital in many cases but support often felt inadequate. The role of information and the manner in which it was communicated was closely linked to participants’ ability to cope. Information needs were variable but on the whole patients and carers did not feel well informed. Dealing with cognitive and physical symptoms of their illness and side effects of treatment inhibited patients’ ability to resume their everyday activities. The lives of relatives were also affected as they struggled to care for their loved ones. People with a diagnosis of glioma were faced with the possibility of death from an early point in their illness trajectory and awareness of this, coupled with ability to make sense of existential issues, varied across participants. Issues around support, communication, information and palliative care were considered to be important among health professionals involved in the care of people with a diagnosis of glioma but provision fell short. Conclusions: Concerns regarding information, communication and support reported elsewhere in the literature are enduring in glioma patients and their relatives. Reporting of unmet psychosocial and supportive care issues by patients and recognition by professionals of the need to improve these dimensions of care for people affected by glioma emphasises previous recommendations yet to be fully implemented into patient care.

Background: Having the support of a partner is essential for both health related quality of life and survival in heart failure patients. However, caring for a patient with heart failure may affect the health related quality of life, well‐being and cause a burden for the partner. The partner is expected to be responsible for the care, which may have consequences for the heart failure patient’s long‐term health and well‐being. Further research to determine health related quality of life, well‐being, caregiver burden and needs of partners is warranted as well as studies evaluating interventions targeting patient‐partner dyads. Aim: The overall aim was to describe how the life situation of patient‐partner dyads was influenced by heart failure and to determine the effects of an intervention of follow‐up with education and psychosocial support for patient‐partner dyads. Design and methods: The thesis is based on three quantitative studies and one qualitative study. The first two studies were descriptive and included 135 dyads (patient‐partner) (I, II) and the randomised intervention study included a total of 155 dyads (IV). The qualitative study had a grounded theory approach. Thirteen partners were interviewed and data analysed using constant comparative method (III). Results: Caregiver burden was perceived as moderate in 30% of the partners and the rest experienced a low caregiver burden. The patients’ physical component score of SF‐36, partners’ mental component score of SF‐36 and perceived control explained 39% of the caregiver burden (I). Patients had lower health related quality of life compared to their partners in all dimensions except in the mental health domain of SF‐36 and lower qualityadjusted life year weights compared to their partners. Mental health scores were lower in partners compared to age and gender‐matched references. All other health related quality of life scores and the quality‐adjusted life year weights were comparable between the partners and the reference group. Patients had more depressive symptoms than their partners. There was no difference in the level of perceived control or knowledge about chronic heart failure between patients and partners (II). During grounded theory analysis confirmation was identified as describing the core category of the partners’ individual needs. The core category theoretically binds together three underlying subcategories: security, rest for mind and body, and inner strength. Confirmation facilitated acceptance and improvement of mental and physical health among partners (III). At the three month follow‐up the dyad‐intervention had improved perceived control in patients, but not in the partners. There were no other significant differences in the control and intervention group with regard to the dyads’ health related quality of life and symptoms of depression. There were also no differences in the patients’ self‐care behaviour and partners’ experiences of caregiver burden (IV). Conclusions and implications: Partners to patients with chronic heart failure are at risk of decreased mental well‐being. One third of the partners experienced a moderate caregiver burden and was therefore at a higher risk of poor mental health and decreased perceived control. During short‐term follow‐up the intervention with education and psychosocial support to dyads (patient‐partner) improved the level of perceived control in the chronic heart failure patient group. By identifying partnersʹ needs for security, rest for mind and body, and inner strength, healthcare professionals can confirm these needs throughout the caring process, from the critical care period and throughout rehabilitation at home. Interventions targeting dyads have been limited in previous research. Partners need to be prepared regarding the disease process, the daily regimen, hopes for the future and responsible care providers. They also need to be confirmed because they are vital to the patients’ recovery. Further, the effects of the intervention study should also include a long‐term follow‐up as well as an evaluation of the health‐economic perspective including direct and indirect costs of care.

The aim of this thesis was to explore patients', families', and nurses' perceptions of the supportive nursing care provided by nurses to patients and their families during acute episodes of chronic heart failure and on a day to day basis at home. The research purpose was to gain knowledge that would advance understanding of supportive nursing care and contribute to a family derived theoretical basis for family nursing. Accordingly, a qualitative study of chronic heart failure patients, their families and nurses in acute and rehabilitative settings was undertaken using a grounded theory approach. Comparative analysis of the data led to the emergence of two major categories: uncertainty and family responsibility. The properties, conditions and consequences of uncertainty, family responsibility and supportive nursing care are explicated in the development of a theory of supportive nursing care for patients and their families. Uncertainty represents the context within which family responsibility and supportive nursing care are situated. Family responsibility for taking care of and protecting the patient emerged as a response to the uncertainty of a chronic life threatening illness under conditions of deteriorating health. Consequences of family responsibility involved major adjustments in living arrangements, relationships and activities of daily living that reflect the reciprocal relationship between the illness and the family and the family and the illness and demonstrate the utility of systems theory as a foundation for family nursing. Supportive nursing care for patients and their families evolved as an integration of physical, emotional and informational support to create a healing environment in which patients and their families feel comforted and reassured.

Background: Mortality rates have fallen resulting in people living longer with cancer. However, cancer survivors can face significant treatment related physical and psychosocial issues including comorbidities. Treatment related side effects can persist in the long-term or may occur many years later. There is now a focus on the best way to provide appropriate care to people who have survived cancer and its treatment. Aim: The aim of this study is to explore the appropriate balance of cancer care for patients following diagnosis and treatment between specialist and primary care. Methods: Semi-structured interviews with a purposive sample of 40 oncologists, CNSs and GPs across Scotland. Data are analysed in a systematic fashion using constant comparison. Findings: Many patients face significant health care issues after a diagnosis of cancer. Professionals often play a pivotal role during follow-up by identifying and managing patients’ physical and psychosocial needs and by sign posting to address the challenges that arise. Psychosocial needs, long-term and late effects are sometimes not addressed. Oncologists are leaders of the cancer care process. CNSs often play a central role in survivorship both in specialist and primary care. GPs’ roles are seen to span the full spectrum of survivorship care, although this is largely opportunistic in nature. Communication between specialist and primary care is a key issue. Professionals perceived that there is insufficient contact across the interface in terms of understanding others’ viewpoints about the nature of their work. Efforts are needed to improve the timeliness and detail of letters to primary care. Successful primary care follow-up may require development of nurses’ roles in general practice and the community. It is perceived that GPs could attend specialist care for survivorship education or become cancer specialists in general practice. Cancer Care Reviews are considered useful tools in terms of allowing GPs to engage with their patients. Improvements to technology and further research are considered central to optimal cancer care. Conclusion: Considerable barriers exist with the current system of follow-up. After the treatment phase, GP survivorship care is largely opportunistic and driven by patients’ needs. Based on the findings from this study, strategies of care could potentially be planned to facilitate the role of primary care. However, research supporting these practices is needed.