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.

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.

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.

Aims: Unmet needs have mainly been investigated with formal and informal adult caregivers and ill individuals within psycho-oncology; findings indicate unmet needs are associated with negative affective state and caregiver burden. Research relating to adolescent children’s experiences of unmet needs during parental illness has, in the main, been based upon parental reports or professional opinion, yet research suggests that parental reports can downplay the effects and it is important to ask the adolescent child for their opinion. Adolescence is a transitional time in development; this may make the illness experience and subsequent needs vary from those of formal and informal adult caregivers. This thesis pragmatically investigates adolescent children’s firsthand accounts of unmet psychosocial and supportive care needs when they have a parent with a non-communicable disease. Methods: Systematic Review: To inform the direction of the thesis and capture all relevant published literature, a comparative systematic review was carried on adolescent’s experiences of unmet needs when they have a parent with a NCD, cancer or psychological problem. The review was conducted using standardized procedures and guidance from the Cochrane collaboration. Interpretative Phenomenological Analysis: Qualitative methodology was used to investigate seven adolescent’s experiences of unmet psychosocial and supportive care needs in relation to having a parent with a NCD. Participants were recruited through institutions of further and higher education. Quantitative Research: Pearson’s correlation and multiple regressions were used to test associations between unmet needs, depression, stress, anxiety and quality of life, and to determine the applicability of the revised version of the Offspring Cancer Needs Inventory (OCNI) for individuals who have a parent with a NCD. One hundred and seven adolescent children completed the revised version of the OCNI, the DASS-21 (depression, anxiety, and stress) and AC-QoL (Adult carers’ quality of life) scales. Findings: Systematic Review: In the review 1479 papers were considered. Seven met the inclusion criteria, of these five papers related to cancer, one to chronic illness and one to psychological problems. Results suggest that adolescents had informational, supportive and recreational needs, and did not want to worry parents by asking them questions. The lack of hits and the disparity between illness groups is problematic in making comparisons and drawing definitive conclusions. Interpretative Phenomenological Analysis: Four interdependent themes emerged from the data, two relating to interpersonal needs (Information Needs and Support Needs), and two relating to intrapersonal needs (Need for 4 Acknowledgement and Need to be Them-Self), each had their own number of sub-themes. Adolescent’s had a variety of needs that could be partially met through honest and accurate information, interpersonal support and acknowledgment of their caring role within the family. The interdependence of the needs indicated that the fulfilment of one need has the potential of meeting other needs. Unmet needs were comparable to those of adolescent children who have a parent with cancer; as such it was deemed that the new version of the OCNI would be suitable for use with individuals who had a parent with a NCD. Quantitative Research: Ninety-Three percent of adolescents reported at least one unmet need. Analysis suggests that the unmet needs variables were co-dependent and correlated with depression, stress, anxiety, and quality of life. Certain unmet need variables predicted stress, anxiety, depression, and quality of life. Conclusion: The findings of this thesis indicate that adolescent children who have a parent with a NCD have a variety of unmet needs, and that these are associated with affective state and well-being. It is suggested that counselling psychologists are well placed to provide psychological and needs based interventions based upon the findings within this thesis. More research is required in this area to determine cause and effect; owing to counselling psychologists working with the lifespan they would be well placed to further the knowledge in this area.

This dissertation uses a multi-method approach to examine the role of online communities as a source of peer-to-peer supportive care for breast cancer survivors. A collection of four studies is presented. Study 1) A systematic search of the Internet identified 111 active online communities for breast cancer survivors with extensive archives of personal health experiences (one third had over 100,000 posts each as of 2010-10-26). More than one-third (36.0%) were initiated by breast cancer survivors or loved ones, and more than two-thirds (69.5%) were maintained with little or no professional input. Study 2) An analysis of Facebook (www.Facebook.com) identified 620 public breast cancer groups containing a total of 1,090,397 members as of 2008-11-23. The majority of groups were created for fundraising and awareness purposes (92.6%), rather than supportive care (7.4%). Study 3) One hundred breast cancer survivors, known to provide peer support were surveyed on their supportive care needs and use of online communities. Two-thirds (68.6%) of the 73 respondents reported at least one unmet need, most frequently (30 to 40%) concerning sexual problems, stress, survivor identity, fear of recurrence, and ongoing symptoms or side effects. About one-third (31.5%) used online communities predominantly during and while recovering from treatment. Reasons for non-use included lack of need, self-efficacy, trust and awareness. Study 4) Twelve breast cancer survivors who participated in the previous study were interviewed on how and why they used online communities. Unmet needs drove use, particularly during periods of stress, uncertainty or insufficient local support. Online communities served as a unique supportive care resource due to their quality of information, reassurance from similar others, availability, anonymity, and limited commitment. Social support, technology adoption and health behaviour theories help to explain use. Online communities have the potential to fill gaps in health care services by addressing the supportive care needs of breast cancer survivors in a way that may not be available elsewhere, and survivors may play an increasingly important role as care providers. Future research must focus on overcoming barriers to use, and identifying factors that enhance their effectiveness among diverse groups.

This dissertation uses a multi-method approach to examine the role of online communities as a source of peer-to-peer supportive care for breast cancer survivors. A collection of four studies is presented. Study 1) A systematic search of the Internet identified 111 active online communities for breast cancer survivors with extensive archives of personal health experiences (one third had over 100,000 posts each as of 2010-10-26). More than one-third (36.0%) were initiated by breast cancer survivors or loved ones, and more than two-thirds (69.5%) were maintained with little or no professional input. Study 2) An analysis of Facebook (www.Facebook.com) identified 620 public breast cancer groups containing a total of 1,090,397 members as of 2008-11-23. The majority of groups were created for fundraising and awareness purposes (92.6%), rather than supportive care (7.4%). Study 3) One hundred breast cancer survivors, known to provide peer support were surveyed on their supportive care needs and use of online communities. Two-thirds (68.6%) of the 73 respondents reported at least one unmet need, most frequently (30 to 40%) concerning sexual problems, stress, survivor identity, fear of recurrence, and ongoing symptoms or side effects. About one-third (31.5%) used online communities predominantly during and while recovering from treatment. Reasons for non-use included lack of need, self-efficacy, trust and awareness. Study 4) Twelve breast cancer survivors who participated in the previous study were interviewed on how and why they used online communities. Unmet needs drove use, particularly during periods of stress, uncertainty or insufficient local support. Online communities served as a unique supportive care resource due to their quality of information, reassurance from similar others, availability, anonymity, and limited commitment. Social support, technology adoption and health behaviour theories help to explain use. Online communities have the potential to fill gaps in health care services by addressing the supportive care needs of breast cancer survivors in a way that may not be available elsewhere, and survivors may play an increasingly important role as care providers. Future research must focus on overcoming barriers to use, and identifying factors that enhance their effectiveness among diverse groups.

Sleep problems affect a considerable number (49-86%) of patients undergoing peritoneal dialysis (PD) treatment. Insomnia i.e. difficulties to initiate and/or maintain sleep or too early wakening, combined with daytime symptoms, seems to be the dominating problem. Despite these facts there is a lack of research in PD-patients, especially studies with objective data on the sleep-wake cycle and evaluation of sleep promoting non-pharmacological  interventions. The overall aim of this thesis was to describe sleep problems from different perspectives, and how these problems affect daily life and health in patients treated with PD at home. The aim was also to evaluate an individualised non-pharmacological intervention for improvement of sleep quality outcomes. Four studies were conducted during eight years, starting in 2002. Patients from six hospitals in the south-east of Sweden were invited to participate. In addition, data from a reference group with Coronary Artery Disease and a population group were used for comparisons with PD-patients in one of the studies. Data was collected by self-reported questionnaires, actigraphy registrations and interviews. Sleep was evaluated in a 17-week single-case study with an intervention focusing on sleep hygiene advice. Data from a total of 700 sleep-wake cycles was collected in the patients’ homes. The main findings clearly demonstrated that PD-patients have seriously fragmented sleep compared to the CAD- and population group, and that the PD-patients have a high prevalence of insomnia. The sleep was mainly disturbed by pruritus and Restless Legs Syndrome (RLS). Daytime impairments and a frequent napping behaviour were detected. The prevalence of fatigue was also reported to be extremely high. The patients described that an ever-present tiredness and poor sleep had consequences in their everyday life both physically, mentally, socially and existentially. The nurse-led intervention demonstrated that individual, non-pharmacological sleep interventions can improve sleep and daytime activities in PD-patients. This thesis elucidates that deteriorated sleep with serious fragmentation leads to a variety of daytime impairments and fatigue. By adopting “renal supportive care” in clinical work a more elaborate assessment and individualised non-pharmacological treatment of sleep problems may improve sleep quality and activity in frail patients undergoing peritoneal dialysis at home.

BACKGROUND: Cancer is primarily a disease of older adults with sixty percent of all incidences occurring in individuals 65 years and over. Coping with cancer may entail additional challenges for older adults due to co-morbidities, declining mobility, reduced social networks and ageism. To date, the majority of research examining supportive care needs has focused on younger women with breast cancer. Little attention has been paid to older adults’ experience with cancer, particularly with respect to psychosocial support. PURPOSE: The aims of the present studies were twofold: (1) to learn more about peer support services in Ontario, specifically: the type and location of available programs; extent of utilization by older adults; and factors that might facilitate or inhibit use by older adults; and (2) to gain a better understanding of the experiences and challenges facing older adults living with cancer, strategies and resources used to meet these challenges, unmet support related needs, as well as awareness of support services, principally peer support. METHODS: First, peer support services in Ontario were identified through an environmental scan. Subsequently, interviews were conducted with 24 key contacts from a purposeful sample (based on type and geographic location) of 30 of these groups. Next, surveys were administered to participants (n=220) and facilitators (n=39) from these groups to establish a profile of current peer support users and deliverers, and examine the extent to which older adults (age ≥ 65) utilized these services. Finally, a preliminary, in-depth, qualitative exploration from the perspective of older adults living with cancer was conducted through a focus group (n=6) and interviews with 20 older adults. RESULTS: The environmental scan yielded a total of 177 peer support cancer programs across Ontario; predominately group-based (93%). Most were located in urban centers. Few programs targeted colon cancer. In the 30 groups examined, breast and prostate cancer were the most common focus (60%). Group facilitators were primarily female (75%) and most had personally experienced cancer (77%). The male facilitators were older (p <.05) and most likely to lead the prostate groups. None of the programs systematically collected client information. Clients ranged in age from 25 to 91 years (mean = 64 ± 10.7). Many were long-term cancer survivors (average five years post diagnosis). Overall, less than half the clients were aged 65 or older. Clients over age 65 were predominately men (86%; p <.001) with prostate cancer. Almost 70% of program directors and over 90% of facilitators were unaware most individuals with cancer are over the age of 65. Interview participants were recruited primarily through the Canadian Cancer Society (CCS). Not surprisingly, 46% had participated in peer support. Older adults identified several challenges with respect to physical functioning, sexuality, emotional distress, and obtaining information. Participants utilized a variety of resources to meet informational and emotional challenges including, the Internet and the support of family and friends. Accessing routine follow-up care after the transition from ‘patient’ to ‘survivor’ was a significant unmet need. CONCLUSIONS: The findings support the premise that cancer peer support services may be under-utilized by older adults, particularly older women. The reasons for these findings remain unclear although ageism may be a factor. Due to the reliance on a convenience sample, qualitative findings that older adults were generally able to meet their supportive care needs cannot be generalized to all older adults living with cancer. Large organizations such as the CCS need to begin systematically collecting demographic and other information on clientele to enhance program planning and delivery. Further research studies on older adults living with cancer are needed to examine their supportive care needs.

BACKGROUND: Cancer is primarily a disease of older adults with sixty percent of all incidences occurring in individuals 65 years and over. Coping with cancer may entail additional challenges for older adults due to co-morbidities, declining mobility, reduced social networks and ageism. To date, the majority of research examining supportive care needs has focused on younger women with breast cancer. Little attention has been paid to older adults’ experience with cancer, particularly with respect to psychosocial support. PURPOSE: The aims of the present studies were twofold: (1) to learn more about peer support services in Ontario, specifically: the type and location of available programs; extent of utilization by older adults; and factors that might facilitate or inhibit use by older adults; and (2) to gain a better understanding of the experiences and challenges facing older adults living with cancer, strategies and resources used to meet these challenges, unmet support related needs, as well as awareness of support services, principally peer support. METHODS: First, peer support services in Ontario were identified through an environmental scan. Subsequently, interviews were conducted with 24 key contacts from a purposeful sample (based on type and geographic location) of 30 of these groups. Next, surveys were administered to participants (n=220) and facilitators (n=39) from these groups to establish a profile of current peer support users and deliverers, and examine the extent to which older adults (age ≥ 65) utilized these services. Finally, a preliminary, in-depth, qualitative exploration from the perspective of older adults living with cancer was conducted through a focus group (n=6) and interviews with 20 older adults. RESULTS: The environmental scan yielded a total of 177 peer support cancer programs across Ontario; predominately group-based (93%). Most were located in urban centers. Few programs targeted colon cancer. In the 30 groups examined, breast and prostate cancer were the most common focus (60%). Group facilitators were primarily female (75%) and most had personally experienced cancer (77%). The male facilitators were older (p <.05) and most likely to lead the prostate groups. None of the programs systematically collected client information. Clients ranged in age from 25 to 91 years (mean = 64 ± 10.7). Many were long-term cancer survivors (average five years post diagnosis). Overall, less than half the clients were aged 65 or older. Clients over age 65 were predominately men (86%; p <.001) with prostate cancer. Almost 70% of program directors and over 90% of facilitators were unaware most individuals with cancer are over the age of 65. Interview participants were recruited primarily through the Canadian Cancer Society (CCS). Not surprisingly, 46% had participated in peer support. Older adults identified several challenges with respect to physical functioning, sexuality, emotional distress, and obtaining information. Participants utilized a variety of resources to meet informational and emotional challenges including, the Internet and the support of family and friends. Accessing routine follow-up care after the transition from ‘patient’ to ‘survivor’ was a significant unmet need. CONCLUSIONS: The findings support the premise that cancer peer support services may be under-utilized by older adults, particularly older women. The reasons for these findings remain unclear although ageism may be a factor. Due to the reliance on a convenience sample, qualitative findings that older adults were generally able to meet their supportive care needs cannot be generalized to all older adults living with cancer. Large organizations such as the CCS need to begin systematically collecting demographic and other information on clientele to enhance program planning and delivery. Further research studies on older adults living with cancer are needed to examine their supportive care needs.