The following resources examine caring associated with the needs of people with AIDS/HIV.
Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.
You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).
The UN General Special Assembly on HIV/AIDS reported that Thailand's elderly are living on the edge of poverty. Those who become caregivers for the children who have been orphaned by AIDS incur even greater challenges. The 2007 Survey of Older Persons of Thailand (SOPT) concluded that there is a range of financial and social safety nets provided by the government, nongovernmental (NGO), and faith-based organizations (FBOs) to help the elderly caregivers and their families. The research offered limited studies on Thailand's elderly caring for these children. The purpose of this phenomenological study was to explore the social, religious and familial experiences of this population. In-depth interviews were conducted with 14 elderly caregivers participating in the Grandma Cares Program (GCP) located in the province of Chiang Mai. They were asked about their caregiving experiences, cultural and Buddhist beliefs, and programs that help them. Data were verified through member checking with a translator. The details of the caregivers' experiences and environments were transcribed and analyzed with Creswell's 6-step process to identify textural and structural themes and patterns. Results of this study indicated that caregivers gained comfort and strength from Buddha's teachings and cultural beliefs, but they would like more support.
Healthcare encompasses multiple discourses to which health professionals, researchers, patients, carers and lay individuals contribute. Networks of patients and non-professionals often act collectively to build capacity, enhance access to resources, develop understanding and improve provision of care. This article explores the concept of health collectives and three notable examples that have had an enduring and profound impact in the Australian context.
In the era of widespread antiretroviral therapy, few studies have explored the perspectives of the relatives involved in caring for people living with HIV (PLHIV) during periods of ill-health leading up to their demise. In this analysis, we explore the process of care for PLHIV as their death approached, from their relatives' perspective. We apply Tronto's care ethics framework that distinguishes between care-receiving among PLHIV on the one hand, and caring about, caring for and care-giving by their relatives on the other. We draw on 44 in-depth interviews conducted with caregivers following the death of their relatives, in seven rural settings in Eastern and Southern Africa. Relatives suggested that prior to the onset of poor health, few of the deceased had disclosed their HIV status and fewer still were relying on anyone for help. This lack of disclosure meant that some caregivers spoke of enduring a long period of worry, and feelings of helplessness as they were unable to translate their concern and "caring about" into "caring for". This transition often occurred when the deceased became in need of physical, emotional or financial care. The responsibility was often culturally prescribed, rarely questioned and usually fell to women. The move to "care-giving" was characterised by physical acts of providing care for their relative, which lasted until death. Tronto's conceptualisation of caring relationships highlights how the burden of caring often intensifies as family members' caring evolves from "caring about", to "caring for", and eventually to "giving care" to their relatives. This progression can lead to caregivers experiencing frustration, provoking tensions with their relatives and highlighting the need for interventions to support family members caring for PLHIV. Interventions should also encourage PLHIV to disclose their HIV status and seek early access to HIV care and treatment services.
This article examines the ways in which Colm Tóibín's The Blackwater Lightship carefully negotiates media discourses on HIV/AIDS and the genre of the AIDS narrative in order to shed new light on the physical and emotional experience of being a family caregiver. The novel elevates the otherwise mundane bed to the status of a symbol that reflects a myriad of unspoken social relations and shows how the daily life of the caregiver challenges their ideals, stretches emotional limits, and heightens interdependency. In reading the complex semiotics of the bedside in the novel, this article reveals the emotional costs of illness. In place of the biomedical focus on cellular decay and tissue damage, interactions at the bedside foreground the social realm of plans abandoned and abilities impaired. As The Blackwater Lightship reveals, bedsides are both real and imagined places of intimacy, care, and connection that are nevertheless fraught and weighted with meaning; they are the site of the complex emotional commitments that bind caregivers and patients together and provide spaces for intimacy, vulnerability, and reflection.
China is experiencing a rapid increase in the number of HIV-infected women. In this study, we describe the development and preliminary evaluation of an intervention tailored for Chinese HIV-infected women and caregivers to improve their self- and family management, with goals of enhancing their physical quality of life (QOL) and decreasing their depressive symptomatology. Forty-one HIV-infected women and their caregivers were recruited from two premier Chinese hospitals from July 2014 through March 2016. Participants were randomized to either the control or intervention arm for the Self- and Family Management Intervention (SAFMI). Each study dyad in the intervention arm received three counseling sessions with a nurse interventionist. At baseline, immediate post-intervention (month 1) and follow-up (month 3), the participants were assessed by a self-reported survey. Generalized Hierarchical Linear Modeling was used to evaluate the efficacy of the intervention. Chinese HIV-infected women in the intervention arm had significantly higher probability of higher physical QOL at month 1 and lower probability of clinically meaningful depressive symptomatology at month 3 compared with women in the control arm. In contrast, the effects of the intervention were less salient for caregivers. This study represents one of the first in China to include family caregivers in HIV management. Feasibility and acceptability were high, in that family members were willing to join the study, learn about HIV, and practice new skills to support the HIV-infected women in their lives. A larger trial is needed to fully evaluate this intervention which shows promising preliminary effects in promoting physical QOL and decreasing depressive symptomatology among Chinese HIV-infected women.
The role of carers in supporting people with HIV is largely hidden in Western countries in the contemporary era of antiretroviral treatments. Little is known about their needs. A scoping review was undertaken to describe the research available on the needs of this group and identify gaps in existing knowledge. Findings reveal that carers of people with HIV have similar needs to other carers but are currently mostly invisible to support services. The article suggests that the discourse of independence underpinning the new HIV treatment era may be difficult for carers to 'disrupt' by naming what they do as 'care'.
Care work is often feminised and invisible. Intangible components of care, such as emotional labour, are rarely recognised as economically valuable. Men engaging in care work can be stigmatised or simply made invisible for non-conformance to gender norms (Dworzanowski-Venter, 2008). Mburu et al (2014) and Chikovore et al (2016) have studied masculinity from an intersectional perspective, but male caregiving has not enjoyed sufficient intersectional focus. Intersectional analysis of male caregiving has the twin benefits of making 'women's work' visible and finding ways to keep men involved in caring occupations. I foreground the class-gender intersection in this study of black male caregivers as emotional labourers involved in palliative care work in Gauteng (2005-2013). Informal AIDS care and specialist oncology nursing are contrasting cases of male care work presented in this article. Findings suggest that caregiving men interviewed for this study act in gender-disruptive ways and face a stigmatising social backlash in post-colonial South Africa. Oncology nursing has a professional cachet denied to informal sector caregivers. This professional status acts as a class-based insulator against oppressive gender-based stigma, for oncology nursing more closely aligns to an idealised masculinity. The closer to a 'respectable' middle-class identity, or bourgeois civility, the better for these men, who idealise traditionally white male formal sector occupations. However, this insulating effect relies on a denial of emotional aspects of care by male cancer nurses and a lack of activism around breaking down gendered notions of care work. Forming a guild of informal sector AIDs caregivers could add much-needed professional recognition and provide an organisational base for gender norm disruption through activism. This may help to retain more men in informal sector caregiving roles and challenge the norms that are used to stigmatise male caregiving work in general.
Informal care receipt is associated with health outcomes among people living with HIV. Less is known about how caregivers' own social support may affect their care recipient's health. We examined associations between network characteristics of informal caregivers and HIV viral suppression among former or current drug using care recipients. We analyzed data from 258 caregiver-recipient dyads from the Beacon study, of whom 89% of caregivers were African American and 59% were female. In adjusted logistic regression analysis, care recipients had lower odds of being virally suppressed if their caregiver was female, was caring for youth involved in the criminal justice system, and had network members who used illicit drugs. Caregivers' greater numbers of non-kin in their support network was positively associated with viral suppression among care recipients. The findings reveal contextual factors affecting ART outcomes and the need for interventions to support caregivers, especially HIV caregiving women with high-risk youth.;
This article provides the first cross-national review and synthesis of available statistical and research evidence from three developed countries, the UK, Australia and the USA, and from sub-Saharan Africa, on children who provide substantial, regular or significant unpaid care to other family members (‘young carers/caregivers’). It uses the issue of young carers as a window on the formulation and delivery of social policy in a global context. The article examines the extent of children’s informal caregiving in each country; how young carers differ from other children; and how children’s caring has been explained in research from both developed and developing countries. The article includes a review of the research, social policy and service developments for young carers in each country. National levels of awareness and policy response are characterized as ‘advanced’, ‘intermediate’, ‘preliminary’ or ‘emerging’. Explanations are provided for variations in national policy and practice drawing on themes from the globalization literature. Global opportunities and constraints to progress, particularly in Africa, are identified. The article suggests that children’s informal caring roles in both developed and developing nations can be located along a ‘caregiving continuum’ and that young carers, globally, have much in common irrespective of where they live or how developed are their national welfare systems. There is a need in all countries for young carers to be recognized, identified, analysed and supported as a distinct group of ‘vulnerable children’.
Caring for a family member with HIV/AIDS presents multiple challenges that strain a family's physical, economic and emotional resources. Family carers provide physical care and financial support and deal with changes in family relationships and roles, often with little support from outside of the family. Carers in developing countries face even greater challenges, due to lack of medical and support services, poverty and widespread discrimination against those with HIV/AIDS. Little is known about how family carers cope with these challenges or about the ways that development impacts on the process of coping. The current study explored coping strategies used by family carers in two contexts, Kerala, India and Scotland, UK. As part of a larger study, 28 family carers of persons living with HIV/AIDS were interviewed −23 in Kerala and 5 in Scotland. A modified version of the Ways of Coping scale was used to assess coping strategies. Responses were compared on the total number of coping responses used as well as on selected subscales of the WOC. Differences were assessed using the Mann-Whitney U-test. The two cohorts differed significantly in terms of the coping strategies used. The carers from Scotland used a larger number of different coping strategies and scored higher on measures of problem focused coping, positive reappraisal, seeking social support, self-controlling and distancing/detachment. Respondents from Kerala scored higher on a measure of self-blame. Results are discussed in terms of the impact of community resources on coping strategies.
Informal caregivers, most often older people, provide valuable care and support for people ill due to AIDS, especially in poor-resource settings with inadequate health care systems and limited access to antiretroviral therapy. The negative health consequences associated with care-giving may vary depending on various factors that act to mediate the extent of the effects on the caregiver. This paper investigates the association between care-giving and poor health among older carers to people living with AIDS, and examines potential within-gender differences in reporting poor health. Data from 1429 men and women aged 50 years or older living in two slum areas of Nairobi are used to compare AIDS-caregivers with other caregivers and non-caregivers based on self-reported health using the World Health Organization disability assessment (WHODAS) score and the presence of a severe health problem. Women AIDS-caregivers reported higher disability scores for mobility and the lowest scores in self-care and life activities domains while men AIDS-caregivers reported higher scores in all domains (except interpersonal interaction) compared with other caregivers and non-caregivers. Multiple regression analysis is used to examine the association of providing care with health outcomes while controlling for other confounders. Consistently across all the health measures, no significant differences were observed between female AIDS-caregivers and female non-caregivers. Male AIDS-caregivers were however significantly more likely to report disability and having a severe health problem compared with male non-caregivers. This finding highlights a gendered variation in outcome and is possibly an indication of the differences in care-giving gender-role expectations and coping strategies. This study highlights the relatively neglected role of older men as caregivers and recommends comprehensive interventions to mitigate the impact of HIV and AIDS on caregivers that embrace men as well as women.
Purpose – The purpose of this paper is to highlight the complexity surrounding the implementation of advanced electronic tracking, communication and emergency response technologies, namely, an extended safety and support (ESS) system for people with dementia (pwd) living at home. Results are presented from a Swedish demonstration study (2011-2012) conducted in 24 municipalities.
Design/methodology/approach – It is a descriptive intervention study with a pre-post test design. Questionnaires were administered to pwd, carers and professionals at the outset and eight months later. ESS logging data were analyzed.
Findings – ESS usage rates varied widely. A total of 650 alerts were triggered, mainly when the pwd was outdoors. Activities were reduced amongst pwd, most likely due to a progression of their disease. Carers noted that pwd were more independent than previously on those occasions when they engaged in outdoor activities. Staff considered that nearly half of pwd could remain living at home due to the ESS, compared with a third amongst carers. In total, 50 per cent of carers felt it was justified to equip their relative with an ESS without their explicit consent, compared to one in eight staff.
Research limitations/implications – A limitation is the amount of missing data and high drop- out rates. Researchers should recruit pwd earlier in their illness trajectory. A mixed-methods approach to data collection is advisable.
Practical implications – Carers played a crucial role in the adoption of ESS. Staff training/supervision about assistive devices and services is recommended.
Social implications – Overall, use of ESS for pwd living at home was not an ethical problem.
Originality/value – The study included key stakeholder groups and a detailed ethical analysis was conducted.
Presents a list of medicine and health research sources selected by the editorial board for the October 2004 to April 2005 issue of the magazine "Research Matters." "A Better Life: Private Sheltered Housing and Independent Living for Older People"; "New Lifestyles in Old Age: Health, Identity and Well-Being in Berryhill Retirement Village"; "Young Carers in the UK: The 2004 Report"; The Commercial Exploitation of Children and Young People: An Overview of Key Literature and Data; "Images of Abuse: A Review of the Evidence in Child Pornography."
Community-based organizations (CBOs) have the potential to provide high quality services for orphaned and vulnerable children in resource-limited settings. However, evidence is lacking as to whether CBOs are reaching those who are most vulnerable, whether attending these organizations is associated with greater psychosocial wellbeing, and how they might work. This study addressed these three questions using cross-sectional data from 1848 South African children aged 9–13. Data were obtained from the Young Carers and Child Community Care studies, which both investigated child wellbeing in South Africa using standardized self-report measures. Children from the Child Community Care study were all CBO attenders, whereas children from Young Carers were not receiving any CBO services, thereby serving as a comparison group. Multivariable regression analyses were used to test whether children attending CBOs were more deprived on socio-demographic variables (e.g., housing), and whether CBO attendance was in turn associated with better psychosocial outcomes (e.g., child depression). Mediation analysis was conducted to test whether more positive home environments mediated the association between CBO attendance and significantly higher psychological wellbeing. Overall, children attending CBOs did show greater vulnerability on most socio-demographic variables. For example, compared to children not attending any CBO, CBO-attending children tended to live in more crowded households (OR 1.22) and have been exposed to more community violence (OR 2.06). Despite their heightened vulnerability, however, children attending CBOs tended to perform better on psychosocial measures: for instance, showing fewer depressive symptoms (B = − 0.33) and lower odds of experiencing physical (OR 0.07) or emotional abuse (OR 0.22). Indirect effects of CBO attendance on significantly better child psychological wellbeing (lower depressive symptoms) was observed via lower rates of child abuse (B = − 0.07) and domestic conflict/violence (B = − 0.03) and higher rates of parental praise (B = − 0.03). Null associations were observed between CBO attendance and severe psychopathology (e.g., suicidality). These cross-sectional results provide promising evidence regarding the potential success of CBO reach and impact but also highlight areas for improvement.
Reflections by an HIV clinical nurse specialist on family members who perform the role of informal carers only reluctantly. A case study of an elderly HIV-positive patient who refuses to adhere to treatment or advice, looked after by his elderly sister, is used to illustrate the problems involved. [(BNI unique abstract)]
Discusses whether national context has influence on the experience and use of highly active anti-retroviral therapy for people living with HIV/AIDS. Information on a research of the International Collaboration on HIV Optimism on the comparison of gay men in terms of their levels of optimism about the effects of highly active anti-retroviral therapy; Statements used in the questionnaires to capture the degree of susceptibility and severity of HIV perceived in the context of treatments; Optimism scores of the population studied; Discussion on the role of informal carers in AIDS social care.
This article outlines the methodological process followed in examining a portion of an interview in which an older woman tells of two incidents where she felt effects of associative HIV-related stigma. Through the process of applying different techniques of narrative analysis, the author learned research methods and deepened interpretations of the text. Data management techniques both reflect assumptions and augment understanding. In narrative analysis, the structural whole can best be understood by first examining the architectural detail. This report demonstrates how meaning can emerge from method, theory from transcription, and richness from rigor. It also argues for the utility of narrative analysis to social work research, teaching, and practice.
In rural sub-Saharan Africa, most care for patients with AIDS is provided at home by relatives. Caring for those with AIDS is assumed to be a substantial burden, but little is known from the perspectives of those who provide the care. In this paper we use interviews with caregivers, supplemented with survey data from a larger study in rural Malawi, to investigate this issue. We focus on the caregivers’ diagnoses of the illness of their patients, the type and duration of the care they provided, the support they received from relatives and other members of the community, and the extent to which caregiving was experienced as an emotional, physical, and financial burden. Although none of the caregivers knew of a formal diagnosis and few explicitly named their relative's disease as AIDS, most appeared to suspect it. They described the illness using the typical symptoms of AIDS as they are locally understood and sometimes related the illness to their patient's sexual history. The care, typically given by close female relatives of the patient, was limited to the care that would be given to anyone who was seriously ill. What was striking, however, was the compassion of the caregivers and the attempts they made to provide the best care possible in their circumstances. For most caregivers, kin and members of the community provided social, moral, and physical support, as well as modest financial assistance. Caregiving was physically and emotionally demanding and confined the caregivers to their home, but most caregivers did not consider caregiving a problem primarily because the patients were close relatives. The financial impact of caregiving was typically modest because the caregivers had very little income and few possessions to sell.
Drawing on an interview-based case study of young people caring for dependent adult members of their households in Harare, this paper connects the experiences of young carers in Zimbabwe to global forces—namely the HIV/AIDS pandemic and economic liberalisation. It is argued, firstly, that care-giving by young people is a largely hidden and unappreciated aspect of national economies which is growing as an outcome of conservative macroeconomic policies and the HIV/AIDS explosion. Secondly, that young people have a right to recognition of their work as work. Thirdly, while acknowledging that conceptualising childhood is problematic, there needs to be less emphasis on northern myths of childhood as a time of play and innocence and more attention on defending children's rights to work as well as to be supported in their work under appropriate circumstances. The articulation between global processes and the localised experiences of individual children as providers of care within the home contributes to efforts to re-introduce social reproduction as an important (but often missing) aspect of debates around globalisation. In addition, this article adds to the growing literature on the geographies of childhood while tackling the imbalance within that literature, whereby working young people and those of the global South are relatively neglected. Suggestions are offered in the conclusions for policy recommendations to recognise and support young carers in Africa, while calling for further research.
The phenomenon of post-traumatic growth has been explored within the context of HIV disease in only a limited fashion. One hundred and seventy-six bereaved HIV/AIDS carers located all over Canada responded to a questionnaire about their experiences; 51.7% of these individuals were male, 46% were female and 2.3% were transgender. The range of deaths experienced was from 0 to 110. Forty-four per cent of the carers were themselves HIV-positive. Of all the HIV carers in this study, 86.4% of them exhibited symptoms of post-traumatic stress disorder. Despite this, 81.8% had scores high enough to be indicative of post-traumatic growth. This study provides a portrait of bereaved HIV carers in Canada and both the positive and negative realities associated with that situation.
Nigeria has an estimated 930 000 AIDS orphans, which has a marked impact on family and community. This study was performed to characterise caregivers’ knowledge regarding HIV/AIDS and their attitude towards HIV/AIDS, orphans in general and AIDS orphans in particular. Caregivers and non-caregivers aged 25–70 years in Nigeria were interviewed from January and March 2003, and logistic regression analysis was used to determine associations between caregivers’ knowledge regarding HIV/AIDS and attitudes towards HIV/AIDS, orphans and AIDS orphans, and demographic characteristics and background status regarding HIV/AIDS and orphans. A total of 824 interviewees participated in the survey (82.4% response rate), of whom 290 (35.2%) were current caregivers of orphans. The mean number of orphans per current caregiver was 1.8 (standard deviation 1.4). Factors related to higher knowledge level regarding HIV/AIDS were female gender [odds ratio (OR) = 3.49; 95% confidence interval (CI): 2.33, 5.22] and belief that AIDS is a common disease (OR = 3.39; 95% CI: 2.19, 5.26). Factors associated with positive attitudes towards HIV/AIDS, orphans in general and AIDS orphans in particular were age 35–44 years (OR = 1.73; 95% CI: 1.11, 2.69), Koranic schooling (OR = 8.69; 95% CI: 2.42, 31.19), polygamy (OR = 1.76; 95% CI: 1.17, 2.62), belief that there are increasing numbers of orphans in the community (OR = 2.59; 95% CI: 1.32, 5.08) and having relatives or friends with HIV/AIDS (OR = 2.88; 95% CI: 1.61, 1.58). There was a slight correlation (r = 0.17, P < 0.001) between caregivers’ knowledge regarding HIV/AIDS and positive attitudes towards HIV/AIDS, orphans and AIDS orphans. Demographic characteristics and personal experience should be taken into consideration to improve attitudes and behaviour related to HIV/AIDS and caring for orphans and AIDS orphans.
There is a continual need to support and assist carers who play a central role in providing informal care for a relative. This approach to care provision must have a strong foundation based on liaison between the family carers, professional carers and the older or disabled person who is the focus of care. Services that enable effective communication using videoconferencing, interactive communication, tailored Web based programs and other specific resources configured for the needs of the individual can help carers carry out their role effectively. The initiative described in this paper uses a combination of telematic focused interventions to meet the needs of carers and provides an in-depth overview of the ACTION telecare project.
The ACTION (Assisting Carers using Telematic Interventions to meet Older persons’ Needs) project was set up and funded because of the need to develop supportive methods for carers and older people. The initiative was designed to improve autonomy and maintain independence and quality of life for people in their own homes and therefore reduce the need for institutional care. This has an economic as well as a social dimension. The project has demonstrated that with the involvement of users at all levels it can fulfil this need. The role of the ACTION project was to develop a cost-effective telecare system for the provision of education, information and support and has been demonstrated with successful results.
Background The growing global epidemic of HIV/AIDS has a significant impact on the lives of both people living with HIV/AIDS and their family members including children. Children of parents with HIV/AIDS may experience an increased responsibility of caregiving in family. However, limited data are available regarding the caregiving experience and its impact on psychosocial well-being among these children. This study was designed to address these issues by using qualitative data collected from children affected by HIV/AIDS in China.
Methods The qualitative data were collected in 2006 in rural central China, where many residents were infected with HIV/AIDS through unhygienic blood collection procedures. In-depth individual interviews were conducted by trained interviewers with 47 children between 8 and 17 years of age who had lost one or both parents to AIDS.
Results Findings of this study suggest that many children affected by AIDS had experienced increased responsibilities in housework and caregiving for family members. Such caregiving included caring for self and younger siblings, caring for parents with illness and caring for elderly grandparents. Positive impacts from children's participation in family caregiving included personal growth and emotional maturity. Negative consequences included physical fatigue, psychological fear and anxiety and suboptimal schooling (dropping out from school, repeated absence from school and unable to concentrate in class).
Conclusion While the increased caregiving responsibilities among children reflected some cultural beliefs and had some positive effect on personal growth, the caregiving experience generally negatively effected the children's physical and mental health and schooling. The findings in the current study suggest that community-based caregiving support is necessary in areas with high prevalence of HIV and limited resources, especially for the families lacking adult caregivers. In addition, social and psychological support should be made available for children participating in family caregiving.
There is only a small evidence base to draw upon when choosing assistive devices. Evaluations such as those funded by the Medicines and Healthcare products Regulatory Agency,* Department of Health, United Kingdom, generate data from which evidence-based guidelines can be compiled, but it is often difficult to determine the relative importance of the various factors involved.
To explore the relative importance of the factors related to the choice of bathing devices, the Delphi technique was employed. Thirty respondents were recruited following a formal evaluation of bath cushions and agreed to participate in the study (5 users, 10 informal carers and 15 professional care assistants), with 14 completing the process.
Three rounds were conducted, in which the respondents were asked to review a list of factors to consider when choosing bathing devices, to indicate the most important, to rank them and to comment on the results.
The safety of the user was reported to be the primary concern. The factors that eased the care assistant's task were regarded as less important, but several respondents remarked on the interrelationships between the factors. The ranking of the factors may jeopardise a comprehensive consideration of all the needs assessed, especially with people who have complex requirements. The limitations of the Delphi technique in such situations are discussed.
Health professionals such as nurses, physiotherapists and occupational therapists provide a wealth of support in the community to patients and their carers receiving palliative care. Moving and handling is one such support that needs careful consideration and assessment including risk, by appropriately qualified professionals. A combination of skills are required as well as knowledge of up to date equipment to assist the health professional in deciding how to formulate safe moving and handling interventions in a timely way. Patients with palliative care needs and their carers should be given the appropriate care and support necessary using a holistic, flexible and patient-centred approach to service delivery.
This paper reports on the three initial steps taken to develop the World Health Organization's Quality of Life instrument (WHOQOL) module for assessment of persons living with HIV/AIDS (PLWHA). First, a consultation of international experts was convened to review the suitability of the generic WHOQOL-100 for assessment of PLWHA. The experts proposed additional facets that are specific to the lives of PLWHA. Second, 42 focus groups (N=235) were conducted by six culturally diverse centres--comprising of PLWHA, informal carers and health professionals--to (1) review the adequacy of the WHOQOL for PLWHA, (2) review the additional facets proposed by the experts, and (3) write additional facets and items for a pilot instrument. Third, results of steps 1 and 2 were consolidated, and a total of 115 items, covering 25 new facets and sub-facets for assessment of QoL specific to PLWHA, were prepared for pilot testing. The new facets included symptoms of HIV, body image, sexual activities, work, social inclusion, disclosure, death and dying, and forgiveness. The implications of cross-cultural QoL assessment for PLWHA are discussed.
This article explores informal carers' experiences in caregiving for people living with HIV and AIDS. The search for meaning encompasses the ways in which carers find meaning in caregiving. A grounded theory approach was taken. Data were collected by means of 43 in-depth interviews and participant observation. Caregivers felt that it was important to have control over the emphasis that HIV had within their lives and developed an attitude that put the virus in perspective. Getting involved in HIV and AIDS work outside of the immediate caregiving relationship was evident. The motivation for this was in part a reaction to prevailing societal views on HIV and in part altruistic in that it provided further meaning for the caregiving experience. This study suggests that finding meaning in caregiving is a powerful way to achieve a balance between the costs of caregiving and personal reward.
With the increasing number of people living with HIV/AIDS and the escalating costs of health care, there is an increasing demand for informal caregiving in the community. Currently, much emphasis is placed on individuals who are living with HIV/AIDS (in terms of the provision of social, psychological and economic support), but very little attention has been paid to the well-being and quality of life of informal caregivers. Lack of support and care for caregivers may have a negative impact on the quality of care and effective services for individuals living with HIV/AIDS. This paper is based on findings from a qualitative study that explored major sources of stress associated with caregiving among informal caregivers in a village in the southern part of Botswana. The paper suggests that informal caregivers are an integral part of the continuum of care. As a result, they need to be nurtured and supported for the betterment of those both infected and affected by HIV/AIDS. The paper concludes by discussing the implications for further research, policy and programme development.
Two studies examined autobiographical remembering in those with HIV (Study 1) and in carers of those with HIV (Study 2) in Iran. Study 1 investigated posttraumatic stress disorder (PTSD) and depression symptoms, executive control, and autobiographical remembering in those with HIV. Individuals with HIV (n = 34) and healthy controls (n = 34) completed the Impact of Event Scale-Revised, Beck's Depression Inventory-II, Beck's Anxiety Inventory, Autobiographical Memory Interview, Autobiographical Memory Test, Wisconsin Card Sorting Test, and Tower of London. The results indicated higher PTSD and depression symptoms among the HIV group. The findings also showed that those with HIV had lower levels of executive functioning, deficits in autobiographical remembering (semantic and episodic) and retrieved less specific autobiographical memories than the control group. Study 2 examined depression, executive functioning, and autobiographical memory performance among carers of those with HIV (n = 26) and healthy controls (n = 26). The same measures were completed as in Study 1. The results indicated higher depression among the carers group but the groups did not differ in terms of executive functioning or semantic recollection. The carers had lower episodic recall scores and less specific memories than the control group. The findings are discussed in terms of the processes involved in nonspecific retrieval of autobiographical material in relation to HIV.
This study examines the experiences of 50 older caregivers to people living with HIV/ AIDS in Lomé, Togo. The authors used a mixed qualitative-quantitative design to identify several challenges faced by the elderly caregivers. They were ill prepared for the caregiving demands and overburdened by enormous financial needs of people with HIV/AIDS, having been unexpectedly thrust into the role. They felt frustration, despair, and isolation because HIV/AIDS has changed the family structures and social expectations. Also, most of them reported how caring for someone with HIV/ AIDS had depleted their resources. Although they did not complain about caring for a person with HIV/AIDS, almost all wished for an institutional solution to relieve them of the burden of providing care. To alleviate the struggles of older caregivers to people with HIV/AIDS policymakers and HIV/AIDS programs need to incorporate caregivers into their policies and services.
“I go to the hospital with my mother when she is sick. I can’t go to school and leave her in so much pain. I won’t concentrate.” Millions of adolescents live with AIDS-affected parents or primary caregivers. Little is known about educational impacts of living in an AIDS-affected home, or of acting as a “young carer” in the context of AIDS. This study combined qualitative and quantitative methods to determine educational impacts of household AIDS-sickness and other-sickness. Six hundred and fifty-nine adolescents (aged 10-20) were interviewed in high-poverty areas of urban and rural South Africa. Qualitative findings identified three major themes of missing school, being hungry at school, and concentration problems due to worry about the sick person. In quantitative analyses, living in an AIDS-affected home predicted all these three outcomes (p < .001) compared to homes affected by other sickness and to healthy homes, and independent of sociodemographic cofactors. This study demonstrates that familial AIDS-sickness is associated with negative educational impacts for adolescents. It is important that policies are developed to support young people in these circumstances to continue with their education.
Research on caregiving children tends to be limited to children's caregiving experiences of parents with a specific disease or disability. This has led to a common perception that children's caregiving is a single, uniform and often long-term experience. Whilst this is most certainly the case for many children in economically more advanced countries, this may not hold true in rural Africa, where poverty and AIDS can have significant knock-on effects on entire families and communities. This paper seeks to develop a more complex understanding of children's caring experiences by asking children whom they have cared for over time and explore the different pathways that lead to their caregiving at different stages of their lives. The study reports on qualitative data collected from 48 caregiving children and 10 adults in the Bondo district of western Kenya in 2007. A multi-method approach was adapted, with historical profiles, Photovoice and draw-and-write essays complementing 34 individual interviews and 2 group discussions. A thematic network analysis revealed that children's caregiving was not confined to a single experience. Children were observed to provide care for a number of different family and community members for varying periods of time and intensities. Although their living arrangements and life circumstances often gave them little choice but to care, a social recognition of children's capacity to provide care for fragile adults, helped the children construct an identity, which both children and adults drew on to rationalise children's continued and multiple caring experiences. The study concludes that agencies and community members looking to support caregiving children need to consider their care trajectories — including whom they care for as well as the order, intensity, location and duration of their past and likely future caring responsibilities.
This paper analyses data from a 3-year prospective study to understand the factors associated with becoming a caregiver to a person with a chronic illness and examines the dynamics among caregivers over time. A total of 1485 participants were drawn from a study conducted in the slums of Nairobi, Kenya. Two waves of data collected in 2006 for the baseline and a follow-up in 2009 were used. Information on the demographic, self-reported health and socioeconomic characteristics such as education, sources of livelihood and employment status was used. Age was a significant factor in becoming a caregiver, but there were no significant differences by gender or marital status. New caregivers and those with more than one care-giving episode had a higher socioeconomic position than non-caregivers. Caregivers also had poorer health compared with non-caregivers, highlighting the association between being a caregiver and negative health outcomes. Additionally, having cared for someone with a HIV-related illness compared with other chronic conditions increased the likelihood of subsequently caring for another person in need of long-term care. This may be due to the heterosexual mode of HIV transmission in sub-Saharan Africa, hence clustering of infection within family or married couples. This finding draws attention to the need to provide timely interventions to caregivers for people with HIV-related illness who are likely to end up providing care to multiple care recipients. Furthermore, there is a need to enhance the indispensable contribution of informal caregivers through incorporating their role within the continuum of care for effective HIV and AIDS management. Overall, informal caregivers to persons with chronic illnesses perform the tasks of care-giving without any formal support from health or social services. Therefore, it is crucial to initiate policies and programmes to ease the burden of care that is borne by informal caregivers.