published_or_final_version / Community Medicine / Master / Master of Public Health

In addition to alleviating pain and physical symptoms, caring for the psychosocial, spiritual and existential needs of terminal cancer patients is very important. Existential issue such as meaning is one of their major concerns. Meaning making can be a powerful mean to enhance the well being of these patients at their end of life. There is limited research on the meaning and meaning making experiences among the Chinese population. This study aims to examine the sources of meaning of these patients and illuminate how they make meaning at the end of life. Cultural features associated with meaning and meaning making at the end of life are explored as well. The current study adopted a constructivist grounded theory approach. Purposive sampling was used to recruit twenty terminal cancer patients from the palliative care unit. Semi-structured interviews and brief life review exercise were conducted with the patients. Forty-three interviews were produced and provided a foundation for the data, along with field notes, interview memos and journals. This study revealed that sources of meaning among the Chinese terminal cancer patients were derived from four major domains. They were self domain, relational domain, physical domain and spiritual domain. These domains were interrelated and having dynamic interactions with each other. A proposed model of meaning making at the end of life also emerged from the collected data. It consisted of four processes: sense making, self constructing, script creating and experiencing sense of connectedness (The 4S Model). Meaning making at the end of life was found to be a cognitive, affective and relational process. Findings revealed the significant role culture and family play in the meaning and meaning making processes of Chinese terminal cancer patients. Knowledge generated from this study informs the development of clinical intervention and practice to improve the well being of patients at the end of life. Implication for the development of meaning measurement and family intervention are suggested. Healthcare practitioners are equipped to move further on the path of developing a holistic care model at palliative care. This study also shed lights on promoting life education in the local community. Life can be brimmed with meaning even in the toughest hours. / published_or_final_version / Social Work and Social Administration / Doctoral / Doctor of Philosophy

Colorectal cancer has been a major health issue worldwide. Not only it affects the patients but it also carries physical and psychological influences to their caregivers. Despite the concerns of the psychological needs of caregivers of colorectal cancer patients, there has been a lack of a good understanding of their needs, and how to intervene in order to alleviate their psychological problems and burdens. Therefore, this thesis aimed at designing and evaluating a nurse-led telephone based psychosocial education program for improving the psychological conditions and quality of life among Chinese caregivers of patients with colorectal cancer. The nurse-led telephone based psycho-educational program was designed based on the transactional model of stress and copying. It was piloted on 6 caregivers and refined. Its efficacy over the patients discharged under the ‘usual routine hospital standard discharge care procedure’ was assessed in a randomized controlled trial on 140 Chinese caregivers of colorectal cancer patients. Caregivers in the intervention group received three telephone calls from an experienced Nurse Interventionist at 1, 3 and 5 weeks after the patients’ discharge. Each call addressed any unmet needs of the caregivers with the provision of education and psychological support. At baseline, 2 weeks, 4 weeks and 8 weeks, all caregivers were assessed for the primary outcome of depression measured by the Depression Anxiety Stress Scale (DASS), and for the secondary outcomes of anxiety, stress, burden of care and quality of life. The mixed effects model, which takes into account the extra-covariance among repeated measurements, and which is consistent with the intention-to-treat principle, was used in the efficacy analysis. Of the 140 caregivers recruited in the randomized controlled study, 5 dropped out before the end of the study. However, all the caregivers were included in the analysis. There was no significant baseline difference between the intervention and ‘usual care’ groups. The psycho-education program reduced depression more than the ‘usual care’ group by2.7 (95% CI = 0.6 to 4.8, p=0.013) units in DASS at 2 weeks, and even more by 3.5 (95% CI = 1.7 to 5.24, p<0.001) at 4 weeks. However, the ‘usual care’ group caught up at 8 weeks, and no significant effect of the psycho-education program was found (p=0.144). Moreover, the program also reduced anxiety and stress more than the ‘usual care’ group by1.83 (95% CI = 0.61 to 3.50, p=0.004) and 3.50 (95% CI = 1.74 to 5.25, p<0.001) respectively at follow-up. In addition, the burden of care and quality of life were also generally improved more in the psycho-education program group. Furthermore, strong positive associations among depression, stress, anxiety, and burden of care were found. Caregivers perceived to have a high burden of care would be associated with more depression, stress or anxiety(r = 0.53, p<0.001). Moreover, depression, anxiety, and stress had a strong negative association with the physical, psychological, social relationship and environmental well-being but not with social relationships(r = -0.16, p = 0.550). In conclusion, this thesis has developed the first nurse-led telephone based psycho-education program for caregivers of colorectal cancer patients. The program can effectively help caregivers in reducing their feelings of stress from depression, anxiety, stress and the burden of care, as well as improving their quality of life. It paves the way for a new direction for a comprehensive colorectal cancer care service in addressing the caregivers’ needs. / published_or_final_version / Nursing Studies / Doctoral / Doctor of Nursing

published_or_final_version / Nursing Studies / Master / Master of Nursing

Thesis (MCur (Nursing Science))--University of Stellenbosch, 2009. / ENGLISH ABSTRACT: Communication in nursing is to establish a nurse-patient relationship. Some nurses are quite effective at this whilst others are not so effective. The female patient diagnosed with cancer of the breast can face many dilemmas ranging from a physical, psychological and psychosocial domain. Nursing, being an interactive skill, requires the nurse to be able to communicate with the patient. The inability to communicate can hamper this very crucial relationship. For the purpose of this study it was decided to provide an in-depth account of the management of the nurse-patient communication in the ward. The rationale for choosing this setting (ward) were based on the comprehensive functions of a professional nurse and his/her ability to communicate. The objectives set for the study were to describe the manner in which professional nurses communicated with the patient diagnosed with cancer of the breast and who underwent a mastectomy, barriers that prohibited the communication and the patient’s perception of the communicative processes. A quantitative, exploratory and descriptive approach was applied to investigate and describe factors that influence communication between the patient with breast cancer and the professional nurse within a provincial hospital in the Western Cape. The total population included only female patients diagnosed with cancer of the breast who underwent a mastectomy and who were referred to the breast outpatient clinic. These female patients had to be diagnosed during a twenty month period as of January 2007 to August 2008 and had to be hospitalised within a ward setting after their diagnosis. The population size consisted of 27% of the total population with a 9% refusal rate. A survey was done using a six point Likert scale ranging from strongly disagree, disagree and mildly disagree to mildly agree, agree and strongly agree. The questionnaire consisting of close-ended questions were used for the collection of data and the researcher personally collected data. Ethical approval was obtained from the Committee of Human Science Research at Stellenbosch University and the Department of Health - Cape Town. Consent to conduct the research was obtained from the institution and informed consent from the participants. A pilot study was conducted to test the questionnaire which did form part of the study. A 10% sample of the population, namely 10 participants, was involved in this study. The validity and reliability was assured through the pilot study and the use of a statistician, experts in oncology nursing, an oncology doctor and the research methodologist. Data was tabulated and presented in histograms and frequencies. Statistical significant associations were drawn between variables, using the Chi square test. The Spearman rank (rho) order correlation was used to show the strength of the relationship between two continuous variables. Findings included statistical significance between the level of schooling and the nurse, who took the respondents at face value and communicated what she deemed necessary (rho=0.29, p=0.00). The respondents also showed concern and disagreed that the ward nurses provide their family with relevant information (p=0.00). R ecommendations include:  Nursing education should include a module in communication on a graduate and post graduate level  In-service training programmes should focus on the interpersonal relationship between the nurse and the patient and the importance thereof.  Continuous Quality Improvement should include patient satisfaction surveys.  Awareness campaigns about the importance of communication between the patient and the health professional should be conducted  Developing protocols and policy guidelines that can assist the nursing staff with the communication process. Since communication is an interactive process it requires skillful conduct. Nurses need to realize the importance communication plays in the health sector and the impact it has on patients, irrespective of whether it is from a verbal or non-verbal content. Effective communication or not can have an everlasting impact. / AFRIKAANSE OPSOMMING: Kommunikasie in verpleging behels die vestiging van ’n verpleegster-pasiënt verhouding. Sommige verpleegsters is taamlik effektief hierin, terwyl andere nie so effektief is nie. Die vroulike pasiënt wat met borskanker gediagnoseer is, kan baie dilemmas in die gesig staar wat wissel van ’n fisiese, psigologiese tot ’n psigo-sosiale domein. Verpleging, wat ’n interaktiewe vaardigheid is, vereis dat die verpleegster met die pasiënt moet kan kommunikeer. Die onvermoë om te kan kommunikeer, kan hierdie beslissende verhouding belemmer. Vir die doel van die studie is besluit om ’n indringende verslag van die bestuur van die verpleegster-pasiënt kommunikasie in die saal te doen. Die rasionaal vir die keuse van die omgewing (saal) is gebaseer op die komprehensiewe funksies van ’n professionele verpleegster en sy/haar vermoë om te kan kommunikeer. Die doelstellings wat uiteengesit is vir hierdie studie is om die manier te beskryf waarop professionele verpleegsters met die pasiënt wat met borskanker gediagnoseer is, en wat ’n mastektomie ondergaan het, omgaan, asook die hindernisse wat kommunikasie en die pasiënt se persepsie van die kommunikatiewe prosesse belemmer het. ’n Kwantitatiewe, verkennende en beskrywende benadering is toegepas om faktore te ondersoek en te beskryf wat kommunikasie tussen die pasiënt met borskanker en die professionele verpleegster in ’n provinsiale hospitaal in die Wes-Kaap beïnvloed. Die totale bevolking het slegs vroulike pasiënte wat met kanker gediagnoseer is en ’n mastektomie ondergaan het en na die bors buite-pasiënt kliniek verwys is, ingesluit. Hierdie vroulike pasiënte moes gedurende ’n periode van twintig maande vanaf Januarie 2007 tot Augustus 2008 gediagnoseer en gehospitaliseer gewees het in ’n saalomgewing na hul diagnose. Die bevolking grootte het bestaan uit 27% van die totale bevolking met ’n 9% verwerpingskoers. ’n Opname was gedoen wat die ses punt Likert skaal gebruik wat wissel vanaf sterk verskil van mening, verskil en effense verskil van mening tot effens saamstem, saamstem en sterk saamstem. Die vraelys wat uit geslote vrae bestaan, was gebruik vir die insameling van data en die navorser het die data persoonlik gekollekteer. Etiese goedkeuring was verkry van die Raad vir Geesteswetenskaplike navorsing aan die Universiteit van Stellenbosch en die Departement van Gesondheid – Kaapstad. Toestemming om die navorsing uit te voer is verkry van die inrigting en ingeligte toestemming van die deelnemers. ’n Loodsprojek is uitgevoer om die vraelys te toets wat deel van die navorsing uitgemaak het. ’n 10% Steekproef van die bevolking, naamlik 10 deelnemers, was betrokke by die studie. Die geldigheid en betroubaarheid was verseker deur die loodsprojek en die gebruik van ’n statistikus, kenners in onkologie verpleging, ’n onkologiese dokter en die navorsingsmetodoloog. Data is getabulleer en aangebied in histogramme en frekwensies. Statistiese beduidende assosiasies is gemaak tussen veranderlikes, deur gebruik te maak van die Chi-kwadraat toets. Die Spearman rang (rho) orde korrelasie is gebruik om die sterkte van die verhouding tussen die aaneenlopende veranderlikes te wys. Bevindings het statistiese beduidendheid ingesluit tussen die vlak van geleerdheid en die verpleegster wat die respondente op sigwaarde geneem het en die kommunikasie wat sy noodsaaklik gevind het (rho=0.29, p=0.00). Die respondente het ook besorgdheid getoon en het nie saamgestem dat die saalverpleegsters hul gesinne van die relevante inligting voorsien het nie (p=0.00). A anbevelings sluit in:  Verpleegopleiding behoort ’n module in kommunikasie op graad en nagraadse vlak in te sluit.  Indiensopleidingsprogramme behoort te fokus op die interpersoonlike verhouding tussen die verpleegster en die pasiënt en die belangrikheid daarvan.  Deurlopende kwaliteitsverbetering behoort pasiënt tevredenheidsopnames in te sluit.  Bewusmakingsveldtogte oor die belangrikheid van kommunikasie tussen die pasiënt en die gesondheidsprofesioneel behoort geloods te word.  Protokolle en beleidsriglyne wat die verpleegpersoneel kan help met die kommunikasie proses behoort ontwikkel te word. Sienende dat kommunikasie ’n interaktiewe proses is, word vaardige gedrag geverg. Verpleegsters behoort die belangrikheid wat kommunikasie speel in die gesondheidssektor te besef en die impak wat dit op die pasiënte het, ongeag of dit verbaal of nie-verbaal is. Effektiewe kommunikasie aldan nie, kan ’n ewigdurende impak hê.

It is estimated that nearly 14.5 million Americans are living with cancer today. A commonly overlooked component to quality cancer care, as defined by the Institute of Medicine, is the role of psychological and social support. Better known as psychosocial support, these needs reflect a broad spectrum of obstacles or assets in an individual’s personal life that may help or hinder their healing experience. Some psychosocial examples include coping skills, transportation to medical appointments, or appropriate knowledge to mitigate the physical impacts of the cancer process. Research has shown that by addressing these potential needs, a better health outcome may be achieved for cancer patients. Through participant observation at local psychosocial service establishments and through semi-structured interviews with service providers and adults diagnosed with cancer living in the Dallas-Fort Worth region, this thesis research seeks to explore how local cancer patients are learning of psychosocial services available to them, what barriers may exist in accessing these services, and what individuals may be doing to address their psychosocial needs, both formally or informally. Results yielded recommendations for local psychosocial providers to adjust their marketing of services and kinds of services offered as well as yielded recommendations for future academic research.

Background: Cancer treatment and management require complicated clinical decision making to provide the highest quality of care for an individual patient. This is facilitated in part with ever-increasing availability of medications and treatments but hindered due to barriers such as access to care, cost of medications, clinician knowledge, and patient preferences or clinical factors. Although guidelines for cancer treatment and many symptoms have been developed to inform clinical practice, implementation of these guidelines into practice is often delayed or does not occur. Informatics-based approaches, such as clinical decision support, may be an effective tool to improve guideline implementation by delivering patient-specific and evidence-based knowledge to the clinician at the point of care to allow shared decision making with a patient and their family. The large amount of data in the electronic health record can be utilized to develop, evaluate, and implement automated approaches; however, the quality of the data must first be examined and evaluated. Methods: This dissertation addresses gaps the literature about clinical decision making for cancer care delivery. Specifically, following an introduction and review of the literature for relevant topics to this dissertation, the researcher presents three studies. In Study One, the researcher explores the use of clinical decision support in cancer therapeutic decision making by conducting a systematic review of the literature. In Study Two, the researcher conducts a quantitative study to describe the rate of guideline concordant care provided for prevention of acute chemotherapy-induced nausea and vomiting (CINV) and to identify predictors of receiving guideline concordant care. In Study Three, the researcher conducts a mixed-methods study to evaluate the completeness, concordance, and heterogeneity of clinician documentation of CINV. The final chapter of this dissertation is comprised of key findings of each study, the strengths and limitations, clinical and research implications, and future research. Results: In Study One, the systematic review, the researcher identified ten studies that prospectively studied clinical decision support systems or tools in a cancer setting to guide therapeutic decision making. There was variability in these studies, including study design, outcomes measured, and results. There was a trend toward benefit, both in process and patient-specific outcomes. Importantly, few studies were integrated into the electronic health record. In Study Two, of 180 patients age 26 years or less, 36% received guideline concordant care as defined by pediatric or adult guidelines, as appropriate. Factors associated with receiving guideline concordant care included receiving a cisplatin-based regimen, being treated in adult oncology compared to pediatric oncology, and solid tumor diagnosis. In Study Three, of the 127 patient records reviewed for the documentation of chemotherapy-induced nausea and vomiting, 75% had prescriber assessment documented and 58% had nursing assessment documented. Of those who had documented assessments by both prescriber and nurse, 72% were in agreement of the presence/absence of chemotherapy-induced nausea and vomiting. After mapping the concept through the United Medical Language System and developing a post-coordinated expression to identify chemotherapy-induced nausea and vomiting in the text, 85% of prescriber documentation and 100% of nurse documentation could be correctly categorized as present/absent. Further descriptors of the symptoms, such as severity or temporality, however, were infrequently reported. Conclusion: In summary, this dissertation provides new knowledge about decision making in cancer care delivery. Specifically, in Study One the researcher describes that clinical decision support, one potential implementation strategy to improve guideline concordant care, is understudied or under published but a promising potential intervention. In Study Two, I identified factors that were associated with receipt of guideline concordant care for CINV, and these should be further explored to develop interventions. Finally, in Study Three, I report on the limitations of the data quality of CINV documentation in the electronic health record. Future work should focus on validating these results on a multi-institutional level.

D.Litt. et Phil. (Sociology) / Reid and Walker (2005) suggest that black South African men are ‘behaving differently’. Added to this Budlender (2008) has found that South African men are more likely to engage in unpaid community care work than conventional wisdom suggests. Part of this community work involves black men acting as AIDS caregivers. It is imperative to gain knowledge about masculine caregivers as the informal health care sector bears the brunt of the HIV pandemic. The fragmented and over-burdened public health system simply cannot absorb the 15-20% of HIV infected South Africans. Coovadia et.al. (2009) point to a lacuna in the scholarship regarding community health workers (CHW) in South Africa. My study of black masculine caregivers, located in the world of informal AIDS care, hopes to fill this gap. Yet, I do something more for I tackle the conventional wisdom that suggests South African men are different and exceptional if they conduct feminised care work. The emotions involved in care processes are the basis upon which society may feminise care work. My argument is also premised upon forging links between the past and the present. As such, I focus upon determining the extent to which emotional labour that may be exhibited by historical and contemporary black men. I make use of W.E.B. Du Bois’ (1903) notion of double-consciousness to show how the normalising society, surrounding masculine care, impacts this category of black men. In so doing, I not only forge links between past and present by means of doubleconsciousness, but I perform an intersectional analysis of emotional labour, and the context, in which it occurs. In so doing, I show how double-consciousness is an intersectionally-forged mechanism for Foucault’s (1978) biopower, and one that has become reinvented in present day South Africa. In this way I augment the works of Du Bois (1903) and Foucault (1978) for both did not give primacy to gender as a construct. It is essentially this view of black men, involved in AIDS care that contributes to the originality of this work. This historical-sociological investigation relied upon the linking of cases. I conducted historical research upon two cases: ‘houseboys’ in colonial Natal (1850 – 1928) and mine hospital ‘ward boys’ (1931 – 1959). Contemporary cases were constructed to reflect the world of AIDS and cancer care. The 13 original cases were compressed into seven case categories and based on triangulated survey and interview data (29 AIDS and 18 cancer caregivers were interviewed; while 195 community workers involved in AIDS care were surveyed in 2005/6; follow-up interviews were conducted with 11 caregivers across all case categories in 2010).

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

published_or_final_version / abstract / Social Work and Social Administration / Doctoral / Doctor of Philosophy