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.

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.

PURPOSE: (1) Investigate supportive care needs and preferences of parents of children with cancer (2) Assess the feasibility and preliminary outcomes of a Parent Support Group Intervention (PSGI). METHODS: One-hundred and eight parents completed the Parent Support Survey (PSS). Data were utilized in the creation of a PSGI. The PSGI consisted of eight 1.5-hour sessions encompassing guided group discussion. As part of feasibility, acceptability, recruitment/retention and preliminary outcomes were assessed. Parents completed outcome measures assessing knowledge of disease/treatment management, community/hospital/family resources, perception of social support and feelings of distress/anxiety. RESULTS: From the PSS, 86/108 (80%) of parents expressed interest in a PSGI. Fourteen parents attended the PSGI only once and 14 parents attended the PSGI more than once. Outcome measure results depict favourable changes after group attendance. Recruitment and retention data highlight challenges. CONCLUSIONS: Information gained from this study will be used to improve planning and delievery of future PSGI’s.

PURPOSE: (1) Investigate supportive care needs and preferences of parents of children with cancer (2) Assess the feasibility and preliminary outcomes of a Parent Support Group Intervention (PSGI). METHODS: One-hundred and eight parents completed the Parent Support Survey (PSS). Data were utilized in the creation of a PSGI. The PSGI consisted of eight 1.5-hour sessions encompassing guided group discussion. As part of feasibility, acceptability, recruitment/retention and preliminary outcomes were assessed. Parents completed outcome measures assessing knowledge of disease/treatment management, community/hospital/family resources, perception of social support and feelings of distress/anxiety. RESULTS: From the PSS, 86/108 (80%) of parents expressed interest in a PSGI. Fourteen parents attended the PSGI only once and 14 parents attended the PSGI more than once. Outcome measure results depict favourable changes after group attendance. Recruitment and retention data highlight challenges. CONCLUSIONS: Information gained from this study will be used to improve planning and delievery of future PSGI’s.

PURPOSE: (1) Investigate supportive care needs and preferences of parents of children with cancer (2) Assess the feasibility and preliminary outcomes of a Parent Support Group Intervention (PSGI). METHODS: One-hundred and eight parents completed the Parent Support Survey (PSS). Data were utilized in the creation of a PSGI. The PSGI consisted of eight 1.5-hour sessions encompassing guided group discussion. As part of feasibility, acceptability, recruitment/retention and preliminary outcomes were assessed. Parents completed outcome measures assessing knowledge of disease/treatment management, community/hospital/family resources, perception of social support and feelings of distress/anxiety. RESULTS: From the PSS, 86/108 (80%) of parents expressed interest in a PSGI. Fourteen parents attended the PSGI only once and 14 parents attended the PSGI more than once. Outcome measure results depict favourable changes after group attendance. Recruitment and retention data highlight challenges. CONCLUSIONS: Information gained from this study will be used to improve planning and delievery of future PSGI’s.

PURPOSE: (1) Investigate supportive care needs and preferences of parents of children with cancer (2) Assess the feasibility and preliminary outcomes of a Parent Support Group Intervention (PSGI). METHODS: One-hundred and eight parents completed the Parent Support Survey (PSS). Data were utilized in the creation of a PSGI. The PSGI consisted of eight 1.5-hour sessions encompassing guided group discussion. As part of feasibility, acceptability, recruitment/retention and preliminary outcomes were assessed. Parents completed outcome measures assessing knowledge of disease/treatment management, community/hospital/family resources, perception of social support and feelings of distress/anxiety. RESULTS: From the PSS, 86/108 (80%) of parents expressed interest in a PSGI. Fourteen parents attended the PSGI only once and 14 parents attended the PSGI more than once. Outcome measure results depict favourable changes after group attendance. Recruitment and retention data highlight challenges. CONCLUSIONS: Information gained from this study will be used to improve planning and delievery of future PSGI’s.

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.

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.

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.