M.A. / Primary malignant brain tumours (PMBTs) are devastating diagnoses that result in the swift deterioration of neurological functioning. The life expectancy of the patient from the time of diagnosis is between three and 12 months. This illness trajectory is characterised by loss of functional abilities such as walking, talking and writing; increasing cognitive impairments such as loss of executive functioning, speech difficulties and problems with comprehension; and the presence of neuropsychiatric symptoms such as depression, anxiety, apathy and aggression. Since treatment is primarily palliative rather than curative, family members and specifically spouses are required to care for PMBT patients in the home setting. The daily challenges of caring for a spouse with a PMBT have a significant impact on the emotional functioning of the caregiver. Although other studies have examined the experiences of various family members of PMBT patients, this research is the first phenomenological study, which investigates the emotional experiences in particular, with a focus on female spouses of PMBT patients. Other studies have also failed to describe the experience of caregivers throughout the entire course of the illness trajectory, that is, from pre-diagnostic symptoms, until the time of death. Therefore, this study attempts to enter the life-world of female spouses of PMBT patients in order to describe their emotional experiences from the time that prediagnostic symptoms manifested, throughout the disease trajectory, and until the death of the patient. A descriptive phenomenological method of enquiry was chosen to achieve this end. Three female spouses of PMBT patients were sourced and interviewed for the purposes of this study. Their husbands had passed away from a PMBT approximately three years prior. Open-ended interviews were conducted in order to elicit their emotional experiences during their husbands’ illness trajectory. The interviews were transcribed verbatim with the inclusion of non-verbal cues where relevant. This data was then analysed using a sequential phenomenological approach. Common themes were integrated to form the essential structure of a female spouse’s emotional experience of her husband’s PMBT illness. These themes were also discussed in conjunction with the literature review to support their validity. The themes that emerged fell within four distinct time periods. The period before diagnosis, at diagnosis, during the course of the illness and at the time of death. Themes that emerged during the research interview were found to be pertinent and were also discussed.

No description available.

Indiana University-Purdue University Indianapolis (IUPUI)

This study was a retrospective examination of the experiences of pediatric cancer patients and their families from a contextual perspective. The home, institution, and community contexts were investigated to reveal their influences on the coping efforts of the study participants. Ten families of children with cancer were interviewed, and data were analyzed qualitatively. Walker's (1985) family stress model and Lazarus' (1984) coping paradigm guided the study. The findings indicated that children were ambivalent in their attitudes toward the disease process. While they did not enjoy painful procedures, sickness, frequent hospitalizations, and baldness, they did welcome the special attention brought about by these stressors. Many of the children in the study understood the impact of their illness on the family. They felt guilty about family financial pressures, parental marital problems, and sibling conflicts that resulted from their cancer. Most feared relapse and death but hid their feelings to protect their parents. Mothers handled the stress of their child's illness by learning all they could about the disease, focusing completely on the sick child, and protecting the child from further harm. Fathers tended to take on the role of "strong one" while worrying about finances and attempting to keep the families together. Differing ways of coping between mothers and fathers often caused feelings of resentment and marital difficulties. Parental attitudes toward the staff at the medical center varied from trust, to wariness, to dependency. Parents enjoyed the support of family, friends, and community during the diagnosis phase, but felt bitter about the lack of support they received during the treatment and completion stages. Some parents believed that their exposure to the stressors of the illness process led to personal growth that they would not have experienced otherwise. Many parents emerged from the cancer ordeal with a desire to help others who were battling childhood cancer. They became involved in a variety of community agencies that served the families of children with cancer. / Ph. D.

This research investigated selected aspects of the effects on adult children of placing a parent in a nursing home; specifically, the ease of placement, change in parent-child relationships, and effects on the personal life of the adult child as perceived by the child. Scales constructed for use in measuring these dependent and several independent variables in an original study were revised on the basis of factor analysis, internal consistency analysis and subjective judgement. The revision of the scales was based on the original study's data. The revised scales were included in a shorter, more focused questionnaire utilized in the present study. Results of the original study and evidence from existing literature formed a basis for hypotheses tested in the present study. Revised questionnaires were mailed to 175 adult children listed as guarantors of patients in seven nursing homes. A 66.9% usable response rate was obtained. Stepwise regression was utilized to test the hypotheses. The results indicated that the more concerned the child was about the parent's placement and the less the child favored the placement, the more difficult it was for the child to carry out the decision to place his or her parent. The placement of a parent did not appear to be accompanied by deterioration of the parent-child relationship. Rather, it tends to either remain the same or improve. Those children who are most likely to have perceived positive change in the relationship were those who had more concerns about the parent being in a nursing home, had younger parents, saw their parent as making a good adjustment to being in a nursing home, and did not view their own aging positively. None of the independent variables were significant predictors of perceived effects on the personal life of the adult child. Support for potential positive changes in parent-child relationships as a result of a parent being placed in a nursing home was discussed. Recommendations for further research utilizing the family theory framework of Bowen (1978) was presented. / Ph. D.

The purpose of this study was to investigate the strengths/weaknesses of the stroke spouse/stroke caregiver relationship in relation to the cerebral hemisphere affected by the stroke, the gender of the stroke spouse, the functional capacity of the stroke spouse, the length of time since the stroke, and the socioeconomic status of the couple. Forty stroke spouses, who had received medical rehabilitation at four medical facilities (Woodrow Wilson Rehabilitation Center, Waynesboro Community Hospital, Chambersburg Hospital, and Blue Ridge Rehabilitation Hospital), and stroke caregivers were interviewed regarding their pre- and post-stroke marital relationship. This study specifically investigated the the spouse caregivers' perceptions of the impact stroke had upon the marriage. Scales assessing the variables of marital health/dysfunction and functional independence of stroke spouse were selected. These included: the Family Assessment Measure (FAM) - dyadic relationship version and the Barthel Index. All scores on FAM were within the normal range of strength/weakness. Results indicated that a significant proportion of the variance in task accomplishment, role performance, communication, control, and total relationship health were associated with the gender of the stroke spouse and the level of functional independence. Spouse caregivers perceived more post— stroke than pre-stroke difficulties in these relationship areas, when the stroke spouse was male and functional disability was high. High functional disability was associated with increased difficulties in values and norms post-stroke and low SES was related to increased problems in affective expression. The cerebral location of the stroke and the length of time since the stroke were not associated with significant changes in caregivers’ perceptions of pre- and post-stroke marital health/dysfunction. Couples with male stroke spouses and/or stroke spouses with significant physical disability are at risk for marital dysfunction. Marital counseling services during medical rehabilitation may be useful to these couples. / Ph. D.

No description available.

Thesis (MSc (Psychology))--University of Stellenbosch, 2005. / Treatment adherence is a great problem in low socio-economic communities of South Africa. The failure to adhere to medication instructions has a negative impact on the patient’s health, social interaction, and on the economy of a nation. The primary aim of this study was to test the Theory of Planned Behaviour. The second aim was to test whether the inclusion of social support of family and friends, as well as psychological factors, improves the Theory of Planned Behaviour’s ability to predict intensions to adhere to treatment instructions. The third aim was to test the relationship between the involved variables and self-reported behaviour, as well as biological indicator that report treatment adherence. There were 79 hypertension patients, 24 diabetic patients, and 14 patients with both hypertension and diabetics, which completed a battery of questionnaires in primary care clinics in and around Stellenbosch.

Thesis (PhD)--Stellenbosch University, 2014. / ENGLISH ABSTRACT: Post-operative laryngectomy patients face various physical, psychological and social challenges. The comprehensive effects of a total laryngectomy can have an adverse impact on the patient and his or her family. Because improved medical treatment can increase the life expectancy of cancer sufferers, psychosocial guidance is required over an extended period. Unfortunately, limited information on the coping strategies of such patients is available. The social work profession could benefit from greater insight into the strengths and coping mechanisms of post-operative cancer patients in order to guide them through their survivorship journey with insight and compassion. The researcher therefore aimed to explore and describe the experience of a patient and his/her close family while coping with the long-term challenges of a laryngectomy. The objectives were: (1) to discuss the nature of cancer survivorship, (2) to describe the medical aspects of and physical re-adjustments to a laryngectomy, (3) to discuss principles and strategies for coping and surviving a laryngectomy, (4) to describe the comprehensive psychosocial effects during the permanent survival phase and re-entry into society; (5) to explore the survivorship journey of laryngectomy patients and their families, and (6) to analyse and interpret data obtained from the study. Each of the survivorship phases as contextualised by Miller et al. (2008:369-374)* is discussed in the literature review. Both the ecological and the strengths perspective were utilised as the theoretical framework for this study. Principles of the strengths perspective focus on the inherent strengths that help patients cope with this traumatic life event, while the ecological perspective focuses on the utilisation of community resources in order to survive the laryngectomy experience. A combination of exploratory and descriptive designs was applied throughout the study to gain insight into the survival experience of post-operative laryngectomy patients and their families. The research question was: “What are patients’ and families’ experiences of surviving a laryngectomy with the assistance of internal and external resources within the family system and environment?” This question was addressed by combining the quantitative and qualitative research approaches. Forty-five post laryngectomy patients and fifteen family members, representing one-third of these patients, were included in the study through purposive sampling. The study period was from June 2012 to July 2013. The inclusion criteria required: (1) Patients from the service area of the selected hospital who received a total laryngectomy as surgical treatment for an advanced stage of cancer of the larynx or hypopharynx; (2) patients who were operated on not less than three months previously; (3) patients who had already completed their initial treatment and who were attending the follow-up clinic; and (4) patients who had successfully acquired trachea-oesophageal speech. Data obtained from the interviews were organised into themes. Four themes were identified: (1) the need for pre-operative information; (2) experience of physical adjustment; (3) coping and strengths used; and (4) experience of psychosocial effects of surgery and re-entry into society. These themes were divided into sub-themes and categories. The main outcome of the study was that both patients and families mobilise a combination of inner strengths and external resources to adapt to the inevitable physical changes resulting from a laryngectomy. It is therefore recommended that social workers dealing with survivorship cases utilise a combination of the ecological and strengths perspectives to create an environment in which patients can explore their own inner strengths, or to help them link to community resources whilst coping with their survivorship journey. Future research should focus on the long-term psychosocial survival of laryngectomy patients and their families, as it is likely that survivorship will increase in future; the implementation of survivorship programmes for health care professionals to equip them with skills to guide cancer survivors to full utilisation of their own strengths and available community resources; the role of pre- and primary school children/grandchildren in the rehabilitation of laryngectomy patients deserves further investigation. / AFRIKAANSE OPSOMMING: Laringektomie-pasiënte word ná hul operasie met verskeie liggaamlike, psigiese en sosiale uitdagings gekonfronteer. Die omvattende gevolge van ‘n totale laringektomie kan die pasiënt en sy of haar gesin nadelig affekteer. Aangesien verbeterde mediese behandeling die lewensverwagting van kankerpasiënte kan verleng, word psigososiale ondersteuning oor ‘n langer tydperk benodig. Ongelukkig bestaan daar baie min inligting oor hoe pasiënte kanker hanteer. Die maatskaplike werk beroep kan dus voordeel trek uit beter insig in die hanteringsmeganismes van post-operatiewe kankerpasiënte om hulle met insig en empatie deur hul oorlewingsreis te kan begelei. Die navorser het ten doel gehad om die ondervindings van die kankerpasiënt en sy/haar naby familie tydens hul langtermynhantering van ‘n laringektomie te ondersoek en te beskrywe. Verdere oogmerke van die studie was: (1) om die aard van kankeroorlewing te bespreek; (2) om die mediese aspekte van en liggaamlike aanpassing ná ‘n laringektomie te beskrywe; (3) om die beginsels en strategieë vir ‘n oorwinning oor ‘n laringektomie te bespreek; (4) om die omvattende psigososiale gevolge van die finale oorlewingsfase en hertoetrede tot die gemeenskap te beskrywe; (5) om die oorlewingsreis van die laringektomiepasiënt en sy/haar gesin te ondersoek; en (6) om die resultate van die studie te ontleed en te interpreteer. Elk van die oorlewingsfases soos deur Miller et al. (2008:369-374)* beskrywe, is in die literatuuroorsig bespreek. Die ekologiese en die sterkte-perspektiewe is tesame as teoretiese raamwerk vir die studie gebruik. Die beginsels van die sterkte-perspektief is op die inherente krag van pasiënte gemik, om te bepaal hoe hulle hierdie traumatiese lewensgebeurtenis hanteer, terwyl die ekologiese perspektief op hul aanwending van gemeenskapsbronne om die laringektomie te oorleef, fokus. ‘n Kombinasie van ondersoekende en beskrywende navorsings ontwerpe is deurgaans gebruik om insig in die oorlewingstryd van laringektomiepasiënte en hul gesinne te verkry. Die navorsingsvraag was: “Wat is pasiënte en hul gesinne se ervarings van oorlewing na ‘n laringektomie met die hulp van interne en eksterne hulpbronne in die gesinstruktuur en omgewing?” Kwantitatiewe en kwalitatiewe navorsingsmetodes is gekombineer om hierdie vraag te ondersoek. Vyf-en-veertig laringektomiepasiënte en vyftien gesinslede, wat verteenwoordigend van twee-derdes van die pasiënte was, is met behulp van ‘n doelbewuste steekproef by die studie betrek. Die studie is tussen Junie 2012 en Julie 2013 onderneem. Die insluitingskriteria was: Pasiënte uit die diensgebied van die spesifieke hospitaal wat 'n totale laringektomie as chirurgiese behandeling vir 'n gevorderde stadium van kanker van die larinks of hipofarinks ontvang het; (2) pasiënte wat hul operasie nie meer as drie maande vantevore ondergaan het nie, (3) pasiënte wat reeds hul aanvanklike behandeling voltooi het en wat die opvolgkliniek bywoon, (4) pasiënte wat tragea-esofageale spraak suksesvol bemeester het. Die data, wat deur middel van onderhoude ingesamel is, is in temas gegroepeer. Vier temas is geïdentifiseer: (1) die behoefte aan inligting voor die operasie; (2) ervaring van liggaamlike aanpassing; (3) die hantering van omstandighede en innerlike krag; en (4) ervaring van die psigososiale uitwerking van die operasie en hertoetrede tot die gemeenskap. Hierdie temas is verder in subtemas en kategorieë verdeel. Die belangrikste uitkoms van hierdie studie is dat beide pasiënte en gesinne ‘n kombinasie van hul innerlike krag en eksterne bronne aangewend het om ná die laringektomie by die onafwendbare liggaamlike veranderinge aan te pas. Daar word dus aanbeveel dat maatskaplike werkers wat kankeroorlewendes hanteer, van ‘n kombinasie van die ekologiese en die sterkte-perspektief gebruik maak om ‘n omgewing te skep waarin die pasiënt sy of haar eie innerlike krag kan ontgin, of om pasiënte te help om kontak met gemeenskapsbronne te maak terwyl hulle die oorlewingsreis baasraak. Toekomstige navorsing behoort te fokus op langtermyn psigososiale oorlewing van laringektomie pasiënte en familie met inagneming van die tendens dat kanker pasiënte se oorlewing toeneem; die implementering van opleidingsprogramme vir gesondheidswerkers te fokus om hulle met die nodige kennis toe te rus om kankeroorlewendes te begelei om hul volle krag en alle beskikbare gemeenskapsbronne te gebruik. Daarby verdien die rol van voorskoolse- en laerskoolkinders in die rehabilitasie van laringektomiepasiënte verdere ondersoek.

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