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.

Made available in DSpace on 2015-07-22T20:50:47Z (GMT). No. of bitstreams: 0 Previous issue date: 2009-11-25. Added 1 bitstream(s) on 2015-08-11T03:25:34Z : No. of bitstreams: 1 Publico-020a.pdf: 165301 bytes, checksum: 478022db64b034bbea30c204bbaf2cb9 (MD5). Added 1 bitstream(s) on 2015-08-11T03:25:34Z : No. of bitstreams: 2 Publico-020a.pdf: 165301 bytes, checksum: 478022db64b034bbea30c204bbaf2cb9 (MD5) Publico-020b.pdf: 118674 bytes, checksum: 3222abfa356d637cdb4ac8248c91cf7a (MD5). Added 1 bitstream(s) on 2015-08-11T03:25:35Z : No. of bitstreams: 3 Publico-020a.pdf: 165301 bytes, checksum: 478022db64b034bbea30c204bbaf2cb9 (MD5) Publico-020b.pdf: 118674 bytes, checksum: 3222abfa356d637cdb4ac8248c91cf7a (MD5) Publico-020c.pdf: 2073396 bytes, checksum: 04ba8e01c6f7b4dd2421e5babffdd4b9 (MD5) / 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

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.

<p><strong>Purpose</strong></p> <p>Colorectal cancer (CRC) is the fourth most common cancer and the second leading cause of cancer death among Canadians. Little is known about the types of supportive care needs (SCNs) that patients with colon cancer experience during the diagnostic phase or whether these needs are met. To inform the development of population specific healthcare services, a needs assessment of patients with newly diagnosed advanced colon cancer was conducted to identify the types, prevalence, severity, and importance of unmet SCNs, as well as to identify any gaps between patient priority needs and their use of supportive care services.</p> <p><strong>Patients and Methods </strong></p> <p>A descriptive cross-sectional survey was conducted. Over one year, all newly diagnosed patients with colon cancer at the Juravinski Cancer Centre were screened for eligibility. Sixty-two of 80 eligible patients completed a self-report written questionnaire prior to starting treatment (response rate = 77.5%). The questionnaire included the Supportive Care Needs Survey-Short Form, Functional Assessment of Cancer Therapy-Colorectal and Health Service Utilization Questionnaire.</p> <p><strong>Results</strong></p> <p>‘Fears about the cancer spreading’ was the most prevalent unmet SCN (n = 52/62 or 84%). Unmet SCNs experienced by 65% or more of participants related to lack of control about treatment outcomes, the uncertain future, and concerns about family member well-being. Patients also rated these needs as being most severe.</p> <p>The two most severe CRC-specific concerns were related to ‘body appearance’ (Mean = 1.77, SD = 1.37) and ‘bowel control’ (Mean = 2.28, SD = 1.37). The most important or priority unmet needs were related to uncertainty about the future (43.5%), fatigue (24.2%), and information (22.6%). Less than 12% of participants had used existing supportive care services in the community.</p> <p><strong>Conclusion </strong></p> <p>Prevalent and priority unmet needs were related to psychosocial support and information. Recommendations for designing colon cancer-specific services are provided along with strategies to improve patient use of existing resources.</p> <p><strong> </strong></p> / Master of Science (MSc)

<p><strong>Purpose: </strong>Current cancer programs in Canada manage adolescents (15-18 years) under a pediatric model of care, and young adults (19-25 years) under a disease-centered model of care. Key issues arise because neither of these models adequately meets the needs of adolescents and young adults (AYA). The aim of this study is to identify health and supportive care (HSC) needs of AYA survivors with cancer. <strong>Method: </strong>A concurrent nested mixed-method design was employed. Qualitative description and a systematic literature review (SLR) were used. Medline, Cochrane Central, PubMed, PsycInfo CINAHL and EMBASE were searched from their date of inception to October 2011. A comprehensive search strategy was developed. 
A purposive sample of AYA survivors with cancer, aged 15-25 years were recruited. Face-to-face qualitative interviews were digitally recorded and transcribed verbatim. Line-by-line coding was used to establish codes and categories. 
<strong>Result: </strong>Our SLR retrieved 760 citations. Among them, 12 were relevant. Qualitative findings are based on 20 interviews. Twelve diagnosed during adolescence and eight in young adulthood. Participants described several HSC needs that we categorized into 7 broad themes (e.g., social health) and 29 sub-themes (e.g., social support). Among the most commonly reported HSC needs for AYA survivors with cancer from both studies, were social wellbeing, information-sharing and communication and service provision. <strong>Conclusion: </strong>This study has identified a comprehensive set of HSC needs of AYA survivors with cancer. Study results will be used to inform the potential development of a new healthcare program for AYA patients in the Hamilton Health Sciences.</p> / Master of Science (MSc)

The thesis, or more precisely its theoretical part, introduces the field of Neonatology, namely the specification of premature newborns concerning supportive care for them. In the thesis, the basic concepts of Neonatology are presented as well as the system of neonatological care, including the needs of premature newborns, which are part of everyday nursing care. Following the above chapters, the thesis describes not only the nursing care as such but also the possibilities of psychosocial care in Neonatology. For a more comprehensive presentation of the issue of premature newborns, the thesis also includes findings concerning ethical issues in Neonatology and it introduces some organizations in the Czech Republic, which are an integral part of the supportive care. The character of the thesis should correspond with the program of nursing care, namely nursing in selected clinical disciplines - the module of paediatrics. In the empirical part of the thesis, qualitative research by interviewing has been used. Despite this scientific approach is more time-consuming, the author considered this method more meaningful and natural concerning the chosen topic because it concerns the support of the lives of these children and their families. Premature newborns are unique, affecting and enriching human being as such. The target of the thesis was firstly to find out how supportive care in premature newborns is perceived by its providers, secondly to disclose the considerations of the care providers regarding premature newborns in České Budějovice. The research was effectuated in connection with the above objectives, which have importance and a significant value for the author. Conclusions of the Thesis: The informants assumed that society didn't have enough information about the provided services. Almost all the informants collaborated on some research or project. As service providers, the respondents acknowledged the comments from the clients. The informants were interested in improving or enhancing the services. The addressed people have specified many factors and difficulties that make their work difficult. The informants concretized foreign experience. The respondents felt considerate enough. The informants expressed sincerely that there was a lot of space for improvement in their profession. The respondents mostly took a partner and gentle stand to the premature newborns and their families. The service providers gave due reasons for a specific approach in their statements. The informants expressed their respect for premature newborns and their families, giving a specific justification. They mostly expressed respect for the needs of the families, for the biorhythms of the baby, for the naturalness, the intuition and the personal pace of the baby. The thesis can be seen as a source of information for both the general and professional public, which could improve current practice. Based on the presentation of the issue through the thesis, the author has published a guide on premature newborns.

Child Health Services (CHS) in Sweden are offered free of charge to all Swedish parents with children 0-5 years of age.  The regular service schedule includes home visits, health examinations, vaccinations and participation in parenting groups. The CHS should pay extra attention to disadvantaged families. The aim of this thesis was to investigate to what extent the CHS reaches groups of families with special needs, e.g. immigrant families, low income families, young and single mothers, with universal or selective measures, as well as to investigate the variation of two determinants of child health, second hand smoke and breastfeeding, in these groups of families. The thesis also aimed at investigating validity of data in the county CHS quality database (Basta). The thesis is based on data from Basta together with several national registers. The CHS equally reached all families with infants with the universal program except for participation in parenting group. Foreign born, young, single and low-income mothers had lower participation rates. Smoking rates were lower in foreign-born than in Swedish-born mothers and higher for foreign-born than in Swedish-born fathers. Smoking was more common among single and low income parents and young mothers. Young and single mothers had lower breastfeeding rates at 6 months. At 12 months the breastfeeding rates were higher among foreign-born mothers. The validity test of data in the Basta database showed sensitivity values for immunizations, breastfeeding and smoking at 90-100 % and for any home visit, participation in parenting group at any time, a minimum number of 6 visits at the Child Health Centre (CHC) and a minimum number of 11 visits at the CHC at 88 - 96 %. The sensitivity value for the exact match of number of CHC visits (+/- 3 visits) was 88 %. Conclusions: The universal programme was equally distributed in different immigrant and socio-demographic populations. However, the results did not indicate equality according to the assumption that some families need more input than others in order to achieve equity of outcome. Individual data routinely collected from CHS records to a quality database provides data of good quality that can be used for both quality surveillance and research.

Extremt prematura barn behöver ofta medicinsk vård dygnet runt, vanligtvis på en neonatal intensivvårdsavdelning (neo-IVA). Miljön på neo-IVA bör erbjuda utvecklingsstödjande vård som stödjer sömn och stabila fysiologiska parametrar. Den medicinska utrustningen och vårdbehandlingen på neo-IVA kan dock leda till negativa effekter för barnen. Prematura barn är känsliga för alla stimuli, såsom höga ljud och stark belysning. De måste skyddas samt vårdas på ett sätt så deras utveckling gynnas. Syftet var att beskriva de faktorer i vårdmiljön inom neonatal intensivvård som främjar de prematura barnens utveckling. Data analyserades enligt Whittemore och Knafls beskrivning. Resultatet presenteras i följande kategorier: icke farmakologiska metoder som främjar barnens utveckling, förutsättningar för att ge barnen en god sömn, miljöns påverkan på barnens beteendemönster, barnens vårdtid påverkas av olika miljöer och miljöns påverkan på barnens fysiologiska parametrar. Resultaten visar att position, beröring, musik, ljud och ljus påverkar hur barnen känner och utvecklas och bidrar med kunskaper om en vårdmiljö som är mer fördelaktig när det gäller barnens vård och utveckling. I diskussionen reflekteras områden som hur personal på neo-IVA kan ge bättre vård för prematura barn med minskat lidande och möjlighet till god utveckling som följd. / Extreme premature infants often require around the clock medical care, typically provided in neonatal intensive care units (NICUs). As such, the environment at NICU should offer developmentally supportive care that supports sleep and stable physiological parameters. However, the medical equipment and procedures in the NICUs can lead to negative effects on infants. Premature infants are sensitive to all stimuli, such as loud noises and bright lighting. They must be protected and cared for in such a way that benefits their development. The purpose was to describe the factors in the care environment in neonatal intensive care that promote the development of premature infants. Data were analyzed according to Whittemore and Knafl's description. The results are presented in the following categories: non-pharmacological methods that promote infant development, conditions for giving infants sufficient sleep, the environment's impact on infants' behavioral patterns, infants' care time affected by different environments and the environment's impact on infants' physiological parameters. The results show that body position, touch, music, sound and light affect how infants feel and develop and contribute with knowledge about a care environment that is more beneficial when it comes to the infant’s care and development. The discussion reflects areas such as how staff at NICU can provide better care for premature infants with reduced suffering and the opportunity for good development as a result.