The purpose of this study was to determine how pain in PLHIV on community home based care programme was managed using the Roy adaptation model (RAM) as the theoretical framework. This study used a descriptive mixed method research design which allowed for the research topic to be investigated and described in terms of both narrative qualitative accounts and descriptive statistics. A sequential exploratory approach was adopted in which qualitative data collection was conducted in the initial phase followed by quantitative data collection. Ten qualitative interviews, guided by the components of the RAM were conducted in the initial phase and a structured interview schedule (questionnaire) partially based on the result of the qualitative phase and (which was also structured in accordance with the RAM) was administered to 120 respondents who met the inclusion criteria of being on CHBC. Convenience sampling was used to select study participants and respondents in both phases of the study. Peripheral neuropathy was the most common pain syndrome experienced by patients. More females suffered numbness/tingling sensation of toes, followed by chest pains than their male counterparts. Pain experienced was moderate to severe which was not treated effectively. The study findings could assist health care providers, policy makers and researchers to invest into improving pain management for PLHIV, strengthen education of patients and their primary caregivers on the causes of pain and modalities to employ for pain relief and implement palliative care guidelines for PLHIV. / Health Studies / D. Litt. et Phil. (Health Studies)

Chan, Hung Yee. / Thesis submitted in: December 2007. / Thesis (M.Phil.)--Chinese University of Hong Kong, 2008. / Includes bibliographical references (leaves 121-142). / Abstracts in English and Chinese. / LIST OF TABLES --- p.xi / Chapter CHAPTER 1 --- INTRODUCTION / The Hong Kong context --- p.1 / The research problem --- p.3 / Conclusion --- p.4 / Chapter CHAPTER 2 --- LITERATURE REVIEW / Introduction --- p.6 / Different interpretations of dementia --- p.7 / Experiences of caregivers of older people with dementia --- p.10 / Factors affecting caregiving experiences --- p.15 / Needs of family caregivers --- p.20 / Summary --- p.23 / Chapter CHAPTER 3 --- METHODOLOGY / Introduction --- p.25 / Aim and objectives --- p.25 / Research design --- p.25 / Sampling method --- p.26 / Data collection method --- p.28 / Pilot study --- p.32 / Data analysis --- p.34 / Validity and reliability --- p.37 / Ethical consideration --- p.40 / Summary --- p.41 / Chapter CHAPTER 4 --- RESULTS / Introduction --- p.42 / Demographic characteristics of informants and older people with dementia --- p.43 / Reasons of caregivers for providing home care --- p.45 / Meaning of care --- p.52 / Perceived difficulties in caregiving role --- p.56 / Sources of stress in the caregiving role --- p.59 / Sources of support in caregiving role --- p.62 / Needs of caregivers --- p.65 / Conclusion --- p.69 / Chapter CHAPTER 5 --- DISCUSSION / Introduction --- p.71 / Reason of providing home care --- p.72 / Chinese cultural influences on family caregiving experiences --- p.80 / Perceived difficulties in caregiving roles --- p.91 / Sources of stress --- p.96 / Sources of support in caregiving role --- p.101 / Needs of family caregivers --- p.104 / Conclusion --- p.108 / Chapter CHAPTER 6 --- CONCLUSION / Introduction --- p.110 / Implications to nursing knowledge --- p.110 / Implications to current practice --- p.112 / Limitation of the study --- p.114 / Recommendation to future research areas --- p.116 / Conclusion --- p.118 / REFERENCES --- p.121 / APPENDICES / Chapter Appendix 1 --- "Approval letter from Survey Ethics Committee, CUHK" --- p.143 / Chapter Appendix 2 --- Information letter to informant (English) --- p.144 / Chapter Appendix 3 --- Information letter to informant (Chinese) --- p.145 / Chapter Appendix 4 --- Interview guide --- p.146 / Chapter Appendix 5 --- An example of transcript of interview and preliminary analysis --- p.147 / Chapter Appendix 6 --- Letter of Access --- p.162

HIV/AIDS is a global challenge and its impact is evident. This places a burden on hospitals and health professionals. To ease this burden there are home-based care programmes which, through home-based caregivers, provide patients living with HIV/AIDS with physical and palliative care. However, these HBCGs face various challenges such as poverty, discrimination and stigma when caring for PALHIV, and their own emotional strain, which becomes burdensome without sufficient support from the home-based care centre. The qualitative study undertaken investigates the challenges and coping mechanisms of the HBCGs. Thirteen research participants were drawn from a centre in Mamelodi. Data was gathered through interviews and observations, categorised into themes and analysed. Major findings revealed that social challenges faced by HBCGs include poverty, stigmatisation and discrimination. Emotions experienced by HBCGs include guilt, anger, hopelessness, but they have spiritual reliance through prayer as one of their coping mechanisms. / Sociology / M.A. (Social Behaviour Studies in HIV/AIDS)

Volunteer caregivers provide essential services to people in the terminal stages of AIDS and their families. Volunteers are exposed to stress and burnout. This study investigated the relationships between stress, coping strategies, levels of burnout and resilience in this population. Volunteers from Societas ‘O Sosiale (SOS) Children Villages and community based organisation (CBO) partnerships, were selected using non-probability purposive convenience sampling. A total of 110 participants were given the Experience of Work and Life Circumstances Questionnaire (WLQ), Brief-Cope, Maslach’s Burnout Inventory (MBI), a Resilience scale and the Living Standard Measure to complete. Statistical analyses were performed on the data. This includes descriptive statistics, reliability analysis, factor analysis, correlations and multivariate analysis of variance. The study found that volunteer caregivers experience high stress levels and burnout related to stressors outside work, remuneration, personnel policies and high resilience. High burnout is associated with all forms of coping. Further it is shown that training in problem-solving skills, counselling, government and public lobbying for support, registration with relevant professional bodies, furnished offices, reasonable recruitment requirements and compensation are needed to help the care givers avert the effect of stressors and control stress by stopping it from turning to burnout. / Psychology / M.A. (Psychology - Research Consultation)

Thesis (PhD)--Stellenbosch University, 2014. / ENGLISH ABSTRACT: Due to a lack of research, which, in turn, resulted in a shortage of applicable literature that focused on the experiences and socio-emotional needs of family members as carers of AIDS-patients, the researcher decided to undertake this research project. The aim of this was to investigate the experiences and socio-emotional needs of family members as AIDS care givers. To lead the research, the researcher made use of a qualitative research approach. Attention was also given to the description of HIV/AIDS, as well as the prevention and treatment of HIV/AIDS. The impact of HIV/AIDS was also given attention, and it was done from an ecological perspective. Within the qualitative research paradigm a phenomenological, explorative, descriptive and contextual research design was utilised. The boundaries for data collection were delineated to the George area. Semi-structured interviews were conducted with family members who acted as primary care givers of AIDS-patients who were recruited by means of purposive sampling and the snowball sampling technique. The data collected were analysed according to the steps for qualitative data analysis as proposed by Tesch (in Cresswell, 1994). To ensure the trustworthiness of the research findings, data verification was executed according to Guba’s model (in Krefting, 1991). The following twelve themes emanated from the process of data analysis: - Knowledge of the disease - Caring for people with AIDS - Risky behaviour - Other people’s reactions - Care givers’ feelings and reactions - Support that was received with the care giving - Effect of the care giving on the relationship between the care giver and the patient - Changes in the care givers’ life because of the care giving of AIDS patients - Experiences regarding the dying process - Needs regarding the caring of the patient - Services that are needed - Advice from the participants to other family members as AIDS care givers. The following recommendations were made based on the conclusions derived from the research findings: Information sessions by Social Workers in collaboration with the different clinics on certain days; a community based project to recruit volunteers to support family care givers on a regular basis; look at facilities, like old age homes and hospices, that can give respite for a week to three weeks; connect family care givers to support groups in the community; make use of the media to give information regarding HIV/AIDS to the broader community; a centralized food and clothes bank from which care givers can draw affordable food and clothes. An application for funding can be done at the Department of Social Development or the Department of Health. Another recommendation that is made is to investigate the possibility of a community based project that provides cleaning and washing services to family members as care givers, as well as the patients. This can even become a job creation project. Other recommendations are: to investigate an alternative form of transport that is wheelchair accessible and patient friendly; to train home based carers to help family members as AIDS care givers; to train home based carers to be of assistance with counseling of patients with regard to their medication; to train home based carers as AIDS care givers to help family members to reach out to other support services or groups; that care givers should be careful about expectations of other people and that they should be confident enough to verbalize their expectations; that Social Workers should investigate if the family member, as AIDS care giver, as well as the patient, gets the necessary support on all levels of the ecological perspective, and if not, he/she must look at ancillary sources and mobilize it to give support to the family care giver as well as to the patient; that professionals need to keep in mind the advice the participants was given to other family members as care givers when they are working with these families. A recommendation was also made to do a follow-up research on the same topic in the White, Indian and Black communities and especially that further emphasis should be placed on their needs, as participation by this population groups were scarce or could not be obtained at all. / AFRIKAANSE OPSOMMING: Weens ‘n gebrek aan navorsing, en gevolglik ook aan literatuur rakende die belewenisse en sosio-emosionele behoeftes van familielede as primêre VIGS-versorgers, het die navorser besluit om hierdie navorsingsprojek te onderneem. Die doel hiermee was om die belewenisse en sosio-emosionele behoeftes van familielede as primêre VIGS-versorgers te verken en te beskryf. Om die navorsing te rig, is ‘n kwalitatiewe navorsingsbenadering vir die doel gebruik. Aandag is ook gegee aan die beskrywing en voorkoms van MIV/VIGS, asook die voorkoming en behandeling van MIV/VIGS. Die impak van MIV/VIGS is ook breedvoerig bespreek en is dit vanuit ‘n ekologiese perspektief gedoen. Binne die kwalitatiewe navorsingsbenadering is daar van ‘n fenomenologiese, verkennende, beskrywende en kontekstuele navorsingsontwerp gebruik gemaak. Die grense vir data-insameling het binne die George-area geval. Semi-gestruktureerde onderhoude is gevoer met familielede wat as primêre VIGS-versorgers optree, en wat deur middel van ‘n doelgerigte steekproeftrekking en die sneeubaltegniek vir deelname aan die navorsing gewerf is. Die ingesamelde data is ontleed aan die hand van die agt stappe van kwalitatiewe data-ontleding van Tesch soos uiteengesit in Creswell (1994). Guba se model soos dit in Krefting (1991:214-221) uiteengesit is, is gebruik om die vertrouenswaardigheid van die navorsingsdata te verifieer. Twaalf temas het na aanleiding van die prosesse van data-ontleding na vore gekom, naamlik: - Kennis van die siektetoestand - Versorging van VIGS-lyers - Risiko-gedrag - Ander mense se reaksie - Versorger se gevoelens en reaksies - Ondersteuning wat ontvang is met die versorging - Effek van pasiënt se versorging op die verhouding tussen versorger en pasiënt - Verandering van versorger se lewe as gevolg van die versorging van die VIGS-lyer - Belewenisse ten op sigte van die sterwensproses - Behoeftes ten opsigte van die versorging van die pasiënt - Dienste wat benodig word - Raad deur deelnemers aan ander familielede as VIGS-versorgers. Voortspruitend uit die navorsingsbevindinge, is tot sekere gevolgtrekkings gekom waaruit die volgende aanbevelings gemaak is: dat inligtingsessies deur maatskaplike werkers in samewerking met die verskillende klinieke op sekere dae gehou sal word; dat ‘n gemeenskapsprojek van stapel gestuur word om vrywilligers te werf wat op ‘n gereelde basis aan VIGS-versorgers ondersteuning bied; dat daar gekyk word na respite by ouetehuise of ‘n hospice vir ‘n tydperk van ongeveer drie weke om aan versorgers ‘n ruskans te gee; dat versorgers betrek word by ondersteuningsgroepe in die gemeenskap; dat die media gebruik word om inligting oor VIGS aan die breë gemeenskap deur te gee; dat aandag gegee word aan ‘n gesentraliseerde voedsel- en klerebank waarvandaan versorgers voorraad kan onttrek. Aansoek vir befondsing kan gedoen word by Departement Maatskaplike Ontwikkeling of Departement Gesondheid. Verdere aanbevelings wat gemaak kan word, is: dat ‘n gemeenskapsprojek van stapel gestuur word om skoonmaakdienste en hulp met wasgoed was tot die beskikking van die VIGS-versorger te stel wat selfs as ‘n werkskeppingsprojek begin kan word; dat ‘n alternatiewe vorm van vervoer wat deur die familielid en pasiënt benut kan word, en wat geskik is vir pasiënt vervoer, ondersoek sal word; dat opleiding van tuisversorgers as hulp vir familielede as VIGS-versorgers aandag sal kry; dat opleiding van tuisversorgers om behulpsaam te wees met berading van pasiënte rakende hulle medikasie dringende aandag sal geniet; dat familielede as VIGS-versorgers uitreik na ander ondersteuningsbronne vir hulp; dat versorgers versigtig sal wees ten opsigte van verwagtinge van ander, maar dat hulle ook vrymoedigheid sal neem om hulle verwagtinge te verbaliseer; dat die maatskaplike werker sal ondersoek instel of die familielid as primêre VIGS-versorger, sowel as die pasiënt, vanuit al die vlakke van die ekologiese perspektief die nodige ondersteuning geniet, en indien nie, moet daar gekyk word na hulpbronne en dit moet gemobiliseer word ten einde hierdie noodsaaklike ondersteuning te bied; dat die raad wat deur die deelnemers aan die navorsing aan ander familielede as VIGS-versorgers voorsien is, in gedagte gehou sal word wanneer met hierdie families gewerk word. ‘n Aanbeveling is ook gemaak dat opvolg navorsing oor dieselfde onderwerp gedoen word onder die Wit, Indiër en Swart gemeenskappe, en dat veral klem gelê word op hulle behoeftes, aangesien deelname vanuit hierdie bevolkingsgroepe skraal was, of glad nie bekom kon word nie.

Thesis (MBA)--University of Stellenbosch, 2010. / Since the first case was discovered in Africa in the late 80s, the HIV/AIDS epidemic has gradually increased at alarming proportions worldwide especially in sub-Saharan Africa which prompted the United Nations' World Health Organisation to declare it a global pandemic. This research undertakes to highlight the current composition of care given for HIV and Aids, and the strengths and weaknesses of such programmes. The aim of this is to establish a better home based care programme in Swakopmund, Namibia, for improving the quality of care as well as living conditions for the infected and affected. For this initiative to be of the highest quality there is need to pay special attention to various regional and national HIV/AIDS programmes and policies. As the HIV/AIDS epidemic continues to spread, organisations and communities are now considering engaging more programmatic approaches as sub-Saharan countries are looking for scaled-up responses and national strategies for home based care. Policy-makers and senior administrators must be involved in developing and monitoring home based care programmes, and the people who manage and run the programmes must share information and feedback with senior administrators. In this sense, policy and action are interrelated as each partner learns from and guides the other. The researcher saw the need to involve community members and home based care-givers in a participatory process to research this topic and engage them in a process on how to improve the programmes that already exist. 52 Pages.

HIV and AIDS are now being considered as a chronic disease. As people live longer the possibility of physical disability increases. This study aimed to investigate the nature of physical disability among HIV/AIDS adults cared for by the Makeni home-based carers in Lusaka, Zambia. Disability was measured based on the World Health Organisation International Classification of Functioning, Disability and Health. This study demonstrated that mostly mild impairments and mild to moderate activity limitations and participation restrictions exists among patients in the Makeni home-based care programme. This study concluded that physiotherapists and other health professionals will have to be more involved in the community home-based programs that are suited for people living with HIV/AIDS so that they are also provided with clinical assessments and rehabilitation services.

HIV and AIDS are now being considered as a chronic disease. As people live longer the possibility of physical disability increases. This study aimed to investigate the nature of physical disability among HIV/AIDS adults cared for by the Makeni home-based carers in Lusaka, Zambia. Disability was measured based on the World Health Organisation International Classification of Functioning, Disability and Health. This study demonstrated that mostly mild impairments and mild to moderate activity limitations and participation restrictions exists among patients in the Makeni home-based care programme. This study concluded that physiotherapists and other health professionals will have to be more involved in the community home-based programs that are suited for people living with HIV/AIDS so that they are also provided with clinical assessments and rehabilitation services.

This is a dissertation Programme Postgraduate Sensu Strictu Nursing, School of Nursing and Pharmacy, Federal University of Alagoas. Given that cancer at some point in evolution of the disease patients need to solve food problems, nursing adopts guidance to patients and their families as part of their care process, thus seeking a comprehensive and humane care. Based on this finding , this paper focuses the response of family members of cancer patients to dietary changes presented by the patient seriously ill. Aims to identify the experience of handling the family regarding the power of family severely affected by cancer at home. Qualitative, descriptive and exploratory survey conducted via guided by the Family Management Style Framework model interviews - FMSF , conducted with 10 family caregivers home. The results indicate that the sample had as main characteristics the fact that the caregiver being a woman, aged 51-60 years percapta low family income and parental great proximity to the patient. The families identified the food situation as being inappropriate; view The food usually eaten to cause health disorders in the critically ill patient and difficulty in providing the satisfaction of the biopsychosocial demands related to the supply of food. From the speech was possible to describe the behavior of management having the family caregiver modified the patient's diet in line with what you believe is a healthy, family caregiver modified the preparation and supply of the diet, the family caregiver changed his own attitude. Thus, the consequence perceived by the caregiver which were reflected in the discovery of effective strategies and confirmation of their previously developed skills. / Tendo em vista que os pacientes oncológicos em algum momento de evolução da doença necessitam resolver problemas alimentares, a enfermagem adota a orientação aos pacientes e seus familiares como parte de seu processo cuidar, buscando assim uma assistência integral e mais humana. Com base nesta constatação, este trabalho tem como objeto a resposta dos familiares de pacientes oncológicos às alterações alimentares apresentadas pelo doente gravemente enfermo. Teve como objetivos conhecer a experiência de manejo da família referente a alimentação do familiar gravemente acometido pela doença oncológica no domicílio. Pesquisa qualitativa, descritiva e exploratória realizada através de entrevistas norteadas pelo modelo Family Management Style Framework - FMSF, com 10 cuidadores familiares. Os resultados apontam que a amostra teve como características principais o fato do cuidador ser mulher, na faixa etária de 51 a 60 anos, baixa renda familiar percapta e grande proximidade parental com o paciente. As famílias identificaram a situação alimentar como sendo inapropriada; a comida usualmente ingerida vista como causadora de transtornos a saúde do paciente gravemente enfermo e, tendo ainda dificuldade em proporcionar a satisfação das demandas biopsicossociais relacionadas ao fornecimento da alimentação. A partir das falas dos sujeitos foi possível descrever o comportamento de manejo tendo o cuidador familiar modificado a dieta do paciente em consonância com o que acredita ser uma alimentação saudável; a modificação do preparo e oferta da dieta; além do familiar ter modificado sua própria atitude quando não foi possível alterar a do paciente. Neste movimento, a consequências percebidas pelo cuidador se refletiram no descobrimento de estratégias eficientes na condução do manejo do problema alimentar e na confirmação de suas habilidades previamente desenvolvidas. Contudo, com o agravamento característico da evolução do câncer, o familiar se viu diante de um problema gradativo com evolução negativa, no qual percebeu-se impotente frente as questões de manejo.

HIV/AIDS is a global challenge and its impact is evident. This places a burden on hospitals and health professionals. To ease this burden there are home-based care programmes which, through home-based caregivers, provide patients living with HIV/AIDS with physical and palliative care. However, these HBCGs face various challenges such as poverty, discrimination and stigma when caring for PALHIV, and their own emotional strain, which becomes burdensome without sufficient support from the home-based care centre. The qualitative study undertaken investigates the challenges and coping mechanisms of the HBCGs. Thirteen research participants were drawn from a centre in Mamelodi. Data was gathered through interviews and observations, categorised into themes and analysed. Major findings revealed that social challenges faced by HBCGs include poverty, stigmatisation and discrimination. Emotions experienced by HBCGs include guilt, anger, hopelessness, but they have spiritual reliance through prayer as one of their coping mechanisms. / Sociology / M.A. (Social Behaviour Studies in HIV/AIDS)