The purpose of this study was to examine the relationships among the factors identified in the McCubbin ( 1993) Resiliency Model of Family Stress, Adjustment, and Adaptation (MRM) to determine the applicability of the model to caregivers for a family member with Alzheimer's Disease (AD). The MRM was developed to describe the factors that influence the family's ability to adapt to a stressful situation over time. The applicability of the MRM to family caregivers in which a family member suffers from progressive dementia, or AD, has not been evaluated. Data were collected through a mail survey sent to 300 family caregivers of persons with AD on the mailing list of a local AD service organization. An anonymous random sample of 43 family caregivers was obtained. Participants completed a demographic tool and two interval level scales developed by McCubbin and colleagues; the Family Index of Regenerativity and Adaptation General (FIRA-G) and the Family Member Well-being Index (FMWB). The instruments measured the association between MRM's independent variables (Stressors, Strains, Social Support, Coping, Coherence, Relative and Friend Support, and Hardiness) and MRM's dependent variables (Family Member Well-Being and Distress). The relationships between the scores of the FIRA-G and the FMWB were determined by Pearson Product Moment Correlation. Significant relationships were found between the factors identified in the MRM. The findings in this study suggest that significant relationships exist among the factors identified in the MRM and that the MRM maybe useful in studying AD populations. Ultimately, the use of the MRM may improve healthcare providers' ability to recognize and treat caregiver stress, which will in turn improve the home care of patients with AD.

In 2050, global estimates indicate that 139 million people will have dementia. Responsible for 60% to 80% of dementia cases, Alzheimer’s disease is the fifth leading cause of death in American adults aged 65 plus and one of the top ten leading causes of death in the United States (U.S.) overall. The clinical manifestations of Alzheimer’s disease expand the nature of the problem from the individual to caregivers. More than 11 million people living in the U.S. provide informal, unpaid care for a loved one with dementia. In recent years, this care equated to an average of nearly 17 billion hours of work. Research shows increased levels of stress, depression, other urgent health issues, and ultimately death, in Alzheimer’s/dementia caregivers compared to non-carers, especially in women. As such, caregivers inadvertently become “invisible second patients,” often neglecting their own health, while focusing on the needs of the care recipient. Enhancing the quality of life and protecting the health and well-being of caregivers is not only essential for their own livelihood, but that of the person living with the condition, as well as communities, healthcare systems and societies, globally. YouTube is a ubiquitous and powerful communications vehicle that is well-positioned to help achieve this goal. With billions of video views occurring daily across 100 plus countries and 92% of viewers asserting that they access information and gain knowledge through the social media platform, it is clear that YouTube appeals to viewers of all backgrounds and literacy levels. There is a substantial amount of research characterizing the content of YouTube videos related to various health topics and caregiving with respect to conditions other than Alzheimer’s; however, studies describing YouTube videos about Alzheimer’s and related care provision are rare. This study intends to fill critical lacunae in the scientific literature by examining the sources, speakers, formats, length and content of the most widely viewed YouTube videos surrounding Alzheimer’s/dementia caregivers through a cross-sectional, descriptive analysis. On October 9, 2022, a clean web browser and YouTube search history were used to locate and select the videos for the study by way of the search term, “alzheimer,” where the YouTube filter was set to sort by view count. After exclusions, a sample of N= 100 of the most highly viewed videos, collectively viewed N= 146,950,160 times, was identified for coding. The results indicated that the average video duration was 11.68 (SD = 16.54) minutes (range = 0.13–87.45 minutes). Most videos (n= 47) were one to four plus minutes in length. More than half (n= 54) of the videos examined originated in the U.S. Videos with Multiple (combination of) Sources comprised the source type found in highest frequency (n= 52) and corresponding cumulative views (>68%), whereas only n= 1 video was posted by a Government Source, securing a mere 0.47% of the views. Compared to other formats, videos with Multiple Formats were found in greatest frequency (n= 85) and number of views (~93%). Videos where the primary speaker was a Layperson (n= 51) garnered the most views (~77%) versus other speaker types. The results also revealed content most and least likely to be covered and viewed. The highest coverage and views for topics related to Alzheimer’s dementia outweighed those of caregiving as follows: Alzheimer's Awareness (n= 99 videos), 99.89% of cumulative views; overall Assessment, detection, diagnosis and/or screening (n= 93), ~97% of views; Warning signs (n= 86), ~94% of views; Symptoms (n= 87), 94% of views; versus Alzheimer’s dementia family/informal caregivers (n= 45), ~34 % of views and caregiver involvement (n= 42), ~32% of views. In addition, overall attention to caregiver burden and maintenance of caregiver health and well-being was weak and that of advocacy efforts (plans, policies, legislation, proceedings, etc.) for the health, well-being and quality of life of carers and people living with Alzheimer’s was essentially non-existent. Contact information (n= 97) was regularly provided to potentially aid in viewer mobilization (~80% views); however, it was rarely connected to entities providing caregiver-specific supports and assistance. Three quarters of the videos (83% of the views) did not have citations. Questionable information was found in approximately one quarter of the videos (with >20% of cumulative views). Examples of questionable information included unproven available treatments such as intermittent fasting, diet modification and supplements, herbs and coconut oil to potentially halt or reverse the deleterious effects of the condition. Strategies and recommendations were presented relevant to a longer-term research agenda; policies and legislation to advance Alzheimer’s/caregiving initiatives; collaborative approaches to care and educational programs; and training for video producers and viewers about respective, optimal dissemination and evaluation of credible and authoritative health information on YouTube. YouTube is a welcome, familiar and accessible communications vehicle that should be leveraged to better understand, advocate for and deliver medically accurate, on-demand critical supports, skill-building and educational programs to carers for people living with Alzheimer’s everywhere, who are overwhelmed, pressed for time and in dire need of assistance. YouTube represents an efficient, cost-effective means through which to improve the health outcomes and quality of life of caregivers, as well as their loved ones with Alzheimer’s.

This study is a mixed-method study that seeks to develop a set of institutional dementia care indicators to evaluate quality of care and inform the improvement of quality of life (QOL) for Taiwanese people with dementia living in care homes. It also uses comparative analysis to compare the different features of policy and its delivery in dementia care between Scotland and Taiwan, a comparison designed to aid the development of dementia care policy, and the establishment of quality indicators for institutional dementia care, in Taiwan. This study employed the person-centred care approach at the micro perspective, and the total quality management (TQM) approach at the macro perspective, in order to inform a seamless care model for people with dementia living in care homes. Data were collected in two stages: comments from experts in dementia care were recorded in an exercise using “Delphi” methodology; subsequently the opinions of service receivers were recorded in a fieldwork exercise. The Delphi exercise (stage one) acted as the pre-test, involving 24 experts in dementia care in Scotland and Taiwan in evaluating the usefulness and applicability of proposed quality indicators for institutional dementia care. Quantitative and qualitative data from the Delphi panel were analyzed. The fieldwork (stage two) collected 237 questionnaires (from 122 residents with dementia and 115 family members) in 14 Taiwanese care homes for people with dementia (including special care units within care homes). The field test data were analyzed using reliability and item analysis, confirmatory factor analysis (CFA), and descriptive and inferential statistics. Initially, 43 proposed quality indicators for institutional dementia care were identified through literature review. However, after two Delphi rounds, only six key dimensions (41 quality indicators) were identified by consensus as the important items for use in measurement of quality of care for people with dementia living in Taiwanese care homes. Through reliability and item analysis, and CFA, this research developed a model which is a three-factor structure (social care, health and personal care, and environment) with 18 quality indicators. The 18 quality indicators have high reliability, validity, and credibility and load onto a second order factor which represents quality of care for people with dementia living in care homes. Further analysis was then conducted to explore how relative ratings on these three factors differed according to measured characteristics of the residents and their family members. In general, only a few strong patterns of difference emerged and multiple linear regression analysis suggested that differences in ratings could not be attributed to influences of socio-economic and socio-demographic differences between respondents. The study concludes that the Delphi method could be used as a methodology for health services research to integrate the opinions of multidisciplinary dementia experts and that CFA is an effective technique to study the empirical factor structure. The findings suggest that the 18 quality indicators could be suitable criteria for people with dementia and their family members to evaluate care quality and select an appropriate care home. The indicators also have important policy implications for the Taiwanese Government and regulations intended to ensure that care homes meet the requirements of service receivers.

The aim of the study was to gain an understanding on the experiences of enrolled nurses with regard to caring for people living with HIV and AIDS in one of the rural hospital in Vhembe district, in order to make recommendations for guiding and supporting those enrolled nurses. This study followed qualitative approach using interpretative phenomenological analysis design. Data were collected from 11 purposively selected participants using semi structured interviews. Data were analysed using interpretative phenomenological analysis framework for data analysis. Three super-ordinate themes emerged from data analysis namely: resources, support and impact of working with HIV positive patients. The study revealed that enrolled nurses are failing to provide proper care to people living with HIV and AIDS due to inadequate resources and lack of support. This situation has negative impact on the health of enrolled nurses providing care to people living with HIV and AIDS. Recommendations are put forth to improve resources, enhance support and for mitigating impacts experienced by enrolled nurses when caring for people living with HIV and AIDS at a rural hospital in Vhembe district of Limpopo province. / Health Studies / M.P.H.

In recent years, the move toward a more holistic perspective in health care has led to social scientists investigating psychosocial factors in chronic illness, such as the different languages used by health professionals when talking about nonhealth. However, there has been little inquiry into caregivers' illness experiences of stroke and Alzheimer's disease (AD). This study therefore explores the illness experiences of seven caregivers whose spouses are stroke or AD patients. A hermeneutic approach was adopted and two relatively unstructured interviews were conducted with each caregiver. Using Kleinman's work on illness narratives as an interpretive framework, it was found that - except for people questioning the authenticity of AD caregivers' experiences - similarities in caregivers' experiences outweighed differences. All described the extent to which their lives had been damaged by the illness and their reparation attempts. Critique of the research is presented and the findings' implications for treatment are suggested / M.A. (Clinical Psychology)

Thesis (MCur)--Stellenbosch University, 2012. / ENGLISH ABSTRACT: Primary Health Care (PHC) provide a quality, comprehensive health service to the community, based on the principles of equity, affordability, accessibility and community participation. It is a nurse driven service with the Clinical Nurse Practitioner (CNP), a registered nurse specialising in the clinical elements of primary, secondary and tertiary prevention at the forefront. It is against this background that this study was endeavored to investigate the community’s perceptions and lived experiences of the quality of care being rendered by CNPs in the West Coast rural district of the Western Cape. The objectives of this study included the following: - To explore and describe the perceptions of patients in the West Coast rural community regarding the attitudes, knowledge and skills of CNPs. - To provide policy makers with feedback and possible recommendations with regards to the implementation of this nurse driven PHC service. - To provide recommendations for improvement of the existing curricula at nursing education institutions based on whether the current training meets patients’ needs and thereby possibly influence curricular change. A qualitative, descriptive, research design was used. The guideline by Colaizzi (as cited in Streubert & Carpenter, 1999:14) was used for data collection and analysis. Twenty-six participants took part in five different group interviews. Semi-structured, open ended questions were used to encourage the participants to actively partake. Each interview was audio taped and field notes were taken. Thematic analyses was performed to highlight three main themes, i.e. the attitudes of the CNPs, the knowledge and skills of CNPs, and the impact of the current training programmes on the quality of care being rendered by these CNPs. Written approval from the Ethics Research Committee, University of Stellenbosch, as well as from the Research unit of the Western Cape Department of Health was obtained. Prior informed consent was further obtained from each participant, after being assured of voluntary participation, confidentiality and anonymity. Credibility, dependability and transferability were ensured by returning to two participants who validated that the transcripts were a true reflection of their experiencesand opinions. This study concluded that patients perceived CNPs as being unfriendly, uncompassionate and unprofessional. Dissatisfaction with the prevalence of unjust practices due to family members and certain race groups being attended to first by CNPs, were expressed. Participants found the competency levels of CNPs more than adequate when assessing, examining and providing health information and medicine. However, they expressed the need that CNPs should be able to prescribe a greater variety of medicines and perform more diagnostic tests than currently permitted by the scope of practice as set out by the South African Nursing Council. Therefore, these views of the participants indicated that the current postgraduate training programme do fulfill their health needs, although the need for expansion of the role and function of the CNP were expressed. Recommendations made included: - An in-depth investigation into the alleged rude attitudes of CNPs should be undertaken, soas to improve the professional behavior of CNPs towards patients. - Applicable policy makers should consider expanding the roles and functions of the CNP. - Enforcing continuous, professional competency through adequate and productive in-service training programmes. In conclusion, this study showed that CNPs need to be constantly aware that they work with human beings, with feelings and with health needs. The need for a therapeutic environment is thus crucial to the rendering of a quality, comprehensive service to the community they serve. / AFRIKAANSE OPSOMMING: Primêre Gesondheidsorg (PGS) voorsien ’n kwaliteit, omvattende gesondheidsdiens aan die gemeenskap, gebaseer op die beginsels van gelykheid, bekostigbaarheid, toeganklikheid en gemeenskaps-betrokkenheid.Dit is `n verpleegaangedrewe diens met die Kliniese Verpleegspraktisyn (KVP) wat gespesialiseerd is in die kliniese elemente van primêre, sekondêre en tersiêre voorkoming, aan die voortou. Dit is teen hierdie agtergrond wat hierdie studie aangepak is, ten einde ondersoek in te stel aangaande die gemeenskap se persepsies en geleefde ervarings van die kwaliteit van sorg wat deur KVPs in die plattelandse Weskusdistrik van die Wes-Kaap gelewer word. Die doelwitte van hierdie studie het die volgende ingesluit: - Om die persepsies van pasiënte, rakende die ingesteldhede (gedrag), kennis en vaardighede van KVPs te ondersoek. - Om toepaslike beleidsmakers metterugvoer en moontlike aanbevelings te voorsien aangaande die implimentering van verpleegaangedrewe, PGS. - Om aanbevelings te maak vir die verbetering van bestaande kurrikula aan verpleegopleidingsinstellings op grond van óf die huidige opleiding in pasiëntbehoeftes voorsien, en sodoende kurrikulumverandering moontlik te beïnvloed. ’n Kwalitatiewe, beskrywende navorsingsontwerp is gebruik. Die raamwerk van Colaizzi (soos beskryf in Streubert & Carpenter, 1999:14) is tydens datainsameling en analiese gebruik. Ses-en-twintig deelnemers het aan die vyf verskillende groepsonderhoude deelgeneem. Semi-gestruktureerde, oop-einde vrae was gebruik om die deelnemers aan te moedig om aktief aan die besprekings deel te neem. Elke onderhoud is op oudio band opgeneem en veldnotas is gemaak. Tydens analiese is drie hooftemas geïdentifiseer, nl die houdings van KVPs, die kennis en vaardighede van die KVPs sowel as die impak van die opleidingsprogram op die kwaliteit van sorg wat deur KVPs gelewer word. Skriftelike toestemming vir die studie is by die Etiese Navorsingkommittee, Universiteit van Stellenbosch, asook die Navorsingseenheid van die Wes- Kaapse Departement van Gesondheid verkry. Voorafgaande toestemming is voorts vanaf elke deelnemer verkry, nadat hulle verseker is van vrywillige deelname, konfidensialiteit en anonimiteit. Geloofwaardigheid, afhanklikheid en oordraagbaarheid is verseker, deur na twee van die deelnemers terug te gaan wat die transkripsies geverifieër het as juis en korrek. In hierdie studie is tot die slotsom gekom dat pasiënte KVPs as onvriendelik enongevoeligervaar het. Onbillike praktyke kom steeds voor, deurdat familielede en sekere rassegroepe voorkeur behandeling kry. Deelnemers se ervarings aangaande die bevoegdheid van KVPs was as toereikend beskryf aangaande die assessering, ondersoek en voorsiening van gesondheidsinligting en medisyne. Hulle het egter ook die behoefte uitgespreek dat die KVP’s `n groter verskeidenheid medisyne behoort voor te skryf en meer diagnostiese toetse behoort te kan uitvoer as wat tans binne die bestek van praktyk, soos neergelê deur die Suid-Afrikaanse Raad op Verpleging, moontlik is. Hierdie persepsie van die deelnemers impliseer dat die huidige nagraadse opleidingsprogram voldoende is en hul gesondheidsbehoeftes aanspreek. Die behoefte vir die uitbreiding van die rol en funksie van die KVP is egter uitgespreek. Die aanbevelings wat gemaak is sluit in: - ’n In-diepte ondersoek oor die onbeskofte ingesteldhede van KVPs behoort uitgevoer te word, ten einde die professionele gedrag van KVPs teenoor pasiënte te verbeter. - Beleidmakers behoort die uitbreiding van die rolle en funksies van die KVP te oorweeg. - Benadruk voortgesette, professionele bevoegdheid deur toepaslike en produktiewe indiensopleidingsprogramme. Ter aflsuiting: hierdie studie het aangetoon dat KVPs voortdurend bewus moetbly dat hulle met mense werk wat gevoelens het en wat gesondheidshulp benodig. Dit is uiters belangrik om aan die behoeftesvan ’n terapeutiese omgewing te voorsien, ten einde ’n kwaliteit, omvattende diens aan die gemeenskap te lewer.

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.

Thesis (MA)--Stellenbosch University, 2013. / ENGLISH ABSTRACT: Dementia is a chronic illness characterised by the progressive deterioration of cognitive functions. Patients diagnosed with dementia are most often cared for by family members. Families caring for dementia patients are faced with tasks that are physically exhausting and psychologically distressing. Nevertheless, some families show resilience and are able to overcome the adversity of the illness. This study aimed to identify and explore the resilience factors these families utilised to rise above the hardships faced when caring for a demented family member. The study was based on McCubbin and McCubbin’s (1996) Family Resiliency Model of Family Stress, Adjustment and Adaptation and Walsh’s (2002, 2003) Family Resilience Framework. A mixed-methods approach was followed to collect data from a convenience sample drawn from the Cape Metropolitan area in the Western Cape, South Africa. The study sample comprised of families in which either a spouse (n = 44) was caring for a partner with dementia or adult children (n = 47) were caring for a parent with dementia. The family resilience factors of these subgroups were explored separately and were compared with each other. The quantitative data analysis was conducted using analyses of variance (ANOVA), Pearson’s product-moment correlation coefficients, and a best-subsets multiple regression analysis. Qualitative data were analysed using thematic content analysis. These analyses revealed that positive communication patterns, acceptance, optimism, family hardiness, family connectedness, and the effective management of symptoms facilitated family adaptation in both the spouse and child subgroups. Negative patterns of communication within the family was the only variable that was inversely related to family adaptation in both family subgroups. The level of adaptation in the different family subgroups did not differ significantly, but the subgroups did differ slightly in terms of their communication patterns, coping strategies and social support avenues utilised. In addition to expanding the current literature regarding family resilience, the body of information collected in this study could be used to help families caring for dementia patients to create a family environment that maximises adjustment and adaptation. The results could also be used in the development and evaluation of intervention programmes tailored to the needs of these family subgroups. / AFRIKAANSE OPSOMMING: Demensie is 'n chroniese siekte wat gekenmerk word deur die progressiewe agteruitgang van kognitiewe funksies. Pasiënte wat met demensie gediagnoseer word, word meestal deur familielede versorg. Gesinne wat sorg vir demensiepasiënte word gekonfronteer met take wat fisies uitputtend en sielkundig ontstellend is. Tog toon sommige families volharding en is hulle in staat is om die teëspoed van hierdie siekte te oorkom. Hierdie studie het gepoog om die veerkragtigheidsfaktore te identifiseer en verken wat deur families wat 'n familielid met demensie versorg, aangewend word om bo hulle omstandighede uit te styg. Die studie is gebaseer op McCubbin en McCubbin (1996) se Family Resiliency Model of Family Stress, Adjustment and Adaptation en Walsh (2002, 2003) se Family Resilience Framework. Beide kwalitatiewe en kwantitatiewe data-insamelingsmetodes is in hierdie studie gebruik. 'n Gerieflikheidsteekproef is uit die Kaapse Metropolitaanse gebied in die Wes-Kaap, Suid- Afrika gewerf en het bestaan uit gesinne waarvan eggenote (n = 44) vir hulle eggenoot met demensie sorg of volwasse kinders (n = 47) vir ’n ouer met demensie sorg. Die gesinsveerkragtigheidsfaktore van hierdie subgroepe is afsonderlik ondersoek en met mekaar vergelyk. Die kwantitatiewe data-analise is via variansieontleding (VARO), die berekening van Pearson se produkmoment-korrelasiekoëffisiënte, en beste-subset regressie-analises uitgevoer. Kwalitatiewe data is met behulp van tematiese inhoudanalise ontleed. Hierdie analises het getoon dat positiewe kommunikasiepatrone, aanvaarding van die situasie, optimisme, familie gehardheid, familie verbondenheid, en die doeltreffende bestuur van demensiesimptome familie aanpassing in beide die eggenoot- en kind-subgroepe gefasiliteer het. Negatiewe, opruiende kommunikasiepatrone binne die gesin was die enigste veranderlike wat in beide subgroepe 'n omgekeerde verwantskap met familie aanpassing gehad het. Die vlak van aanpassing in die verskillende familie subgroepe het nie beduidend verskil nie, maar die subgroepe het effens verskil in terme van hulle kommunikasiepatrone, streshanteringstrategieë, en bronne van sosiale ondersteuning. Die resultate van hierdie studie brei uit op die huidige literatuur oor gesinsveerkragtigheid en kan gebruik word om families wat vir demensiepasiënte sorg te help om 'n familie-omgewing te skep wat die gesin se aanpasbaarheid verbeter. Die resultate kan ook gebruik word in die ontwikkeling en evaluering van intervensieprogramme wat die behoeftes van hierdie subgroepe teiken.

MPhil (Rehabilitation) / Thesis (MPhil (Interdisciplinary Health Sciences))--University of Stellenbosch, 2009. / ENGLISH ABSTRACT: A stroke comes suddenly and has a devastating effect on the lives of the patient and the caregiver. It is disabling and often leaves the patient dependent on care. Providing this care can put tremendous physical, emotional, social and financial demands on the caregiver. The purpose of the study is to determine the impact of caregiving on the primary caregivers of patients who suffered a stroke and were admitted to the Western Cape Rehabilitation Centre (WCRC), for intensive rehabilitation during 2006. This is a descriptive study that utilised both quantitative and qualitative methods of data collection. Quantitative data were collected through two data coding forms, one for caregivers and one for patients, the Bartel Index, the Caregiver Strain Index (CSI) and the Satisfaction With Life Scale (SWLS). Qualitative data were collected through indepth interviews with caregivers. Fifty-seven caregivers participated in the study. According to CSI findings 58% of caregivers were under levels of strain high enough to require support and intervention. The SWLS indicated that the life areas most adversely affected were employment and self and social life. Loss of employment by the caregiver (p = 0.04) and financial difficulties (p = 0.06), cognitive and perceptual problems (p = 0.01), personality changes (p = 0.01), level of physical dependency of patient (0.0012) and nervous strain experienced by the caregiver (0.01) were found to significantly impact on caregiver strain. Caregivers perceived their caregiving duties as overwhelming and a great strain. This was aggravated in some instances by poor health care service delivery at the time of the stroke, no or inadequate explanations on stroke, poor or no training of caregivers, no home visits and a lack of follow-up services in the community. They experienced the period just after discharge as especially challenging and required support, assistance and guidance at that time. Caregivers identified a need for community rehabilitation facilities, adult day care centres, outpatient rehabilitation services, home-based nursing care and caregiver support groups in the community. / AFRIKAANSE OPSOMMING: ’n Beroerte gebeur skielik en sonder enige waarskuwing met ’n vernietigende uitwerking op die lewens van die pasiënt asook die versorger. Dit veroorsaak gestremdheid en laat dikwels die pasiënt afhanklik van sorg. Die voorsiening van hierdie sorg kan erge fisiese, emosionele, sosiale en finansiele eise aan die versorger stel. Die doel van die navorsing is om die impak van versorging op die primêre versorger van beroerte pasiënte, wat gedurende 2006 intensiewe rehabilitasie by WKRS ontvang het, te ondersoek. Dit is ’n beskrywende studie wat gebruik gemaak het van beide kwantitatiewe en kwalitatiewe metodes om data in te samel. Kwantitatiewe data was verkry deur twee datakoderingsvorms, een vir pasiente en een vir versorgers, die Bartel Index, die Caregiver Strain Index (CSI) en die Satisfaction With Life Scale (SWLS). In diepte onderhoude was gevoer met versorgers om kwalitatiewe data te verkry. Sewe en vygtig versorgers het aan die studie deelgeneem. Bevindinge van die CSI dui daarop dat 58% van versorgers hoë vlakke van spanning ervaar en ondersteuning sowel as intervensie benodig. Volgens die SWLS was die areas wat die ernstigste be-invloed was werk en eie en sosiale lewe. Die volgende areas het volgens resulate ’n statisties beduidende impak op die spanning wat versorgers ervaar het gehad: finansiële spanning en verlies van werk (p = 0.04), in gevalle waar pasiente persoonlikheids veranderinge ondergaan het (p = 0.01) of kognitiewe en perseptuale skade oorgehou het (p = 0.01) na die beroerte en die emosionele impak van versorging (p = 0.01). Versorgers het hulle versorgings take as oorweldigend en as ’n bron van groot spanning gesien. Dit is in sommige gevalle vererger deur swak ondersteuning van gesondheidssorgdienste direk na die beroerte, geen of swak verduidelikings oor wat ’n beroerte is, geen of swak opleiding aan versorgers, geen tuisbesoeke en ’n tekort aan opvolg dienste in die gemeenskap. Die tydperk direk na ontslag uit die rehabilitasie sentrum was besonder uitdagend en hulle het ondersteuning, hulp en leiding nodig in daardie tyd. Swak ondersteuning en ’n tekort aan of afwesigheid van hulpbronne in die gemeenskap het die situasie vererger. Versorgers het ’n behoefte aan gemeensskapsrehabilitasie fasiliteite, volwasse dagsorg sentrums, buite patiënte rehabilitasie dienste, tuis verpleegsorg en ondersteuningsgroepe uitgespreek.

published_or_final_version / Social Work / Master / Master of Social Work