HIV and AIDS care: consumers' views on needs and services

Increasing numbers of people suffer from HIV infection, in many sectors of society However, the extent to which health care services meet their needs is open to question This study aimed to gather consumer views and assess the extent to which care was adequate, through interviews with 85 clients Their responses were then compared with those of service providers (published in this journal 2 years ago) Overall there was a general expression of appreciation and satisfaction, although in many cases financial and social deprivation was so extreme that it appeared that established services could not compensate However, the need for better housing and more confidentiality of records was emphazised The need for greater security from the consequences of prejudice was felt strongly and many distressing incidents were recounted The major contrast between consumers' and service providers' views focused on whether separate and specialist provision was required Providers were aware that care would need to be integrated with other generalist services in the future in order to cope with the scale of need, while consumers were keen to retain specialist clinics and wards to protect their confidentiality and sustain the level of expertise they appreciated Within this sample, however, minority groups wished to have their particular needs recognized, in particular women with children and heterosexual males resented being grouped with the majority group of consumers with HIV/AIDS     

Identifying HIV/AIDS primary care development needs

AIM: This paper reports a study aimed at identifying the primary health care experiences of people living with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) in Malaysia. The rationale behind the study was to enable informed action for developing more responsive and effective primary care. BACKGROUND: Reports such as from the World Health Organisation forecast sharp escalations in the incidence of HIV/AIDS in Malaysia and the Asia-Pacific region within the next few years. With sparse information on the course of infection on the local population and an understanding of health care needs of those afflicted, health services would be ill-prepared for projected increases. METHOD: Semi-structured interviews were conducted with a convenience sample of 99 patients attending two major HIV/AIDS clinics in Malaysia. FINDINGS: Several gaps in care provision were highlighted, such as with treatment/consultation facilities and availability and accessibility of information. What is also evident is that there are a number of good support services available but not well publicized to those in need of them. That includes health professionals who could be making appropriate referrals. The lack of communications and inter-professional working appears to be part of the problem. CONCLUSION: The findings provide baseline data and preliminary insights to government and other service providers towards advancing, optimizing and refining existing policies and infrastructure. Although the availability of a number of primary care facilities have been identified, the study indicates the need for more effective co-ordinated efforts with clear leadership to pull together scarce resources towards the aim of some degree of seamless primary care provision. It is suggested that nurses would be well placed for such a role in view of the nature of their education and training that helps prepare them for the multi-faceted role.     

Assessment of palliative care needs for people living with HIV/AIDS in Rwanda

Abstract

The rising number of people living with HIV/AIDS (PLWHA) world-wide has made healthcare professionals and policy makers search for accessible healthcare that will meet the needs of people who are suffering from the disease and enhance their quality of life (QoL). This study investigated met and unmet palliative care needs of PLWHA in selected areas in Rwanda. The study sample included 306 participants: PLWHA, healthcare professionals and co-ordinators of HIV/AIDS units. Quantitative and qualitative methodologies were used. The data were analysed separately and then triangulated. In the findings, over 50% of PLWHA had symptoms related to HIV/AIDS most of the time, with the most common symptom being pain. Participation in activities of daily living was associated with the health status of PLWHA (P < 0.001). The most common perceived palliative care needs of PLWHA were: (i) medical needs, psychosocial needs and the need for financial assistance (77%); (ii) home-based care (47%); (iii) nutritional support (44%); and (iv) pain relief and management of other symptoms (43%). Most PLWHA indicated these palliative care needs were unmet, in particular, the need for pain relief, symptom management, financial assistance and nutritional support. Over 50% of healthcare professionals reported they were not trained in palliative care. They indicated that inadequate policy and resources were the main obstacles to the provision of optimal palliative care. Addressing unmet palliative care needs would enhance the QoL of PLWHA. In addition, developing policy related to the provision of palliative care and building the capacity of healthcare providers is essential for the provision of adequate palliative care services in Rwanda.     

Characteristics of people living with HIV who use community-based services in Ontario, Canada: implications for service providers.

Community-based AIDS service organizations (CBAOs) direct services to multiple-needs people living with HIV/AIDS who are less likely to use mainstream health promotion services. As people live longer with HIV, the potential to enhance quality of life increases, yet little is known about who uses CBAOs or how this use affects other health and social services. This study of people living with AIDS in Ontario, Canada (n = 297) examined the demographic and health-related characteristics of people with AIDS who do and do not use CBAOs and their patterns of mainstream service utilization. It found that users of CBAOs were significantly less healthy, less able to sustain normal activities, and more often depressed. They reported physical disabilities significantly more often. Their quality of life was also lower along certain dimensions. They were significantly poorer and more reliant on government income supports. They consumed significantly more nonhospital health and social services and had significantly higher out-of-pocket costs. These results suggest CBAOs are being accessed appropriately by those most vulnerable. In an effort to strengthen CBAO capacity to recognize and address depression and physical health problems prevalent among their clients, links to other mainstream health promotion and social services is recommended.     

Early intervention services for persons with HIV/AIDS and hepatitis C: a community health center perspective

Visiting Nurse Association of Central Jersey has been involved in care for patients with HIV/AIDS since 1991. In that year, the organization received funding as the lead agency for a Title II grant to establish an HIV/AIDS Consortium consisting of over 20 organizations, including other home care agencies, hospitals, county boards of social service, and other community providers. The Consortium collaborated to establish a thorough network of services: housing, transportation, medical treatment, medication access, support, resource identification, and education for both the infected and affected. As the linkages became stronger, the quantity and quality of services increased so that patients were receiving state-of-the-art health care while wrapped in a blanket of comprehensive supportive services.     

Service Provision for Young People with Intellectual Disabilities and Additional Mental Health Needs: Service‐providers’ Perspectives

Background Very little is known about young people with intellectual disabilities who experience additional mental health problems. The perspective of service providers has been highlighted as one unresearched area. Method Semi‐structured interviews were completed with senior service providers. Aims: (1) to explore experiences of working with young people with intellectual disabilities and additional mental health problems and their families; (2) to examine views on services’ ability to meet the needs of this group. Results Service providers identified a gulf between current policy and the reality for this group, not least in terms of all agencies working in partnership. All agencies described instances when young people in this group fall through gaps between services. Interviewees identified a range of factors that promote good outcomes. Conclusions The results suggest that the focus of current policies to promote joint working needs to be broadened beyond health and social services to ensure much improved links with education providers and the voluntary sector if the needs of this group are to be met.     

Impact of support services provided by a community-based AIDS service organization on persons living with HIV/AIDS.

This study examined demographic, health-related, social support, and service utilization characteristics of clients with high and low use of a community-based AIDS service organization in Canada. The study confirmed that the organizations' services were reaching the most vulnerable persons living with HIV/AIDS. It found that a significantly greater number of high users compared with low users were single, lived alone, and reported poorer health. The similarity in functional health status and depression between user groups, despite high users' poorer health and greater social vulnerability, supports client reports that services have reduced client isolation and improved health-related quality of life. Finally, high users had lower expenditures for government-provided health and social services overall, particularly HIV specialists and AIDS medication, but significantly more expenditures for emergency room services and complementary therapies. The results suggest community-based services can enhance health-related quality of life for persons living with HIV/AIDS by increasing providers' capacity to identify and address client depression and its consequences.     

Ancillary services for individuals living with HIV/AIDS

Providing comprehensive care to those living with HIV/AIDS remains a daunting task. Access to early HIV medical care helps to delay an AIDS diagnosis, and ancillary services can help meet the non-medical needs of HIV-positive individuals, which can ultimately impact their ability to access medical care. Some research has been done measuring ancillary service provision and primary care entry and retention; however, due to the lack of a comprehensive system of care, it has been difficult to determine the true impact of ancillary service usage and health outcomes. Additional qualitative research examining ancillary service usage, health outcomes, and quality of life needs to be done to develop a standard model of appropriate and comprehensive HIV care.     

The experiences of older people on discharge from hospital following assessment by the public health nurse

Aims and objectives. The aim of the study was to explore the experiences of older people on discharge from hospital following assessment by the public health nurse. The objectives of the study were to: (i) identify needs as perceived by older people, (ii) examine if older people felt that these needs were met, (iii) examine the support/care/services received by older people, and (iv) explore any unmet needs of older people. Background. A review of the literature revealed that discharge from hospital remains an area of concern as older people had varying degrees of met and unmet need following discharge from acute hospital. Design/methods. A qualitative study using a phenomenological approach was undertaken. The researcher carried out interviews with a purposive sample of 11 older people in their homes two weeks following discharge from acute hospital. Data were analysed using Colaizzi's method. Results. Older people experienced a wide variety of difficulties in managing aspects of their own care. A reassuring finding of this study is that older people received assistance in this initial discharge period, i.e. they experienced significant informal support complemented by statutory and voluntary support. Even though these older people were assessed by the public health nurse, their need to access services, for statutory service provision, social aspects of their lives and safety measures in their environment were not met. Older people expressed the wish to remain in their own homes. Conclusion. Assessment of older people by the public health nurse is meaningful to identify the needs of older people and provide for the needs of older people though this does not necessarily mean that all the needs of older people can be met by the public health nurse. This study supports the findings of other studies of the problems after discharge and provides an understanding of the experiences of older people on discharge from hospital following assessment by the public health nurse from their perspective. Relevance to clinical practice. The study will provide information that will contribute to current public health nurse practice and will contribute to the understanding of public health nurse practice.     

A structured interview approach to evaluate HIV training for medical care providers.

HIV/AIDS education trainings and self-reported changes in provider behavior resulting from the trainings were evaluated in a structured interview with 24 health care providers. The participants were asked to provide concrete examples of behavior changes related to eight specific areas in the provision of HIV/AIDS medical care. The structured interview process also served as an effective needs assessment of future training topics and of the modalities desired by the providers. The authors' results suggest that by carrying out a structured interview of training attendees, training programs can be more precisely evaluated, and strengths and gaps in overall HIV/AIDS provider education can be better identified and addressed.     

HIV infection in women. Implications for nursing practice.

Much remains to be explained regarding women with HIV infection or AIDS. Interest in determining whether the natural history of the disease or the clinical manifestations are gender specific is leading to more research focused on women. The female roles of childbearer and caretaker evoke ethical issues that are unique to this epidemic and that can impact on the development and delivery of health care services. Women at the greatest risk for HIV disease are not likely to form coalitions to advocate for services, research dollars, and education. They need advocates and assistance in becoming united to advocate for themselves. Nurses have a critical role in the provision of services to women with HIV disease. As educators, direct service providers, and administrators, nurses contribute to the development of services that are holistic and family centered. As advocates, nurses can ensure that women are accurately and well informed about the disease and the resources available to them. Because AIDS no longer affects only those persons living in large metropolitan areas, it is imperative that all nurses become experts in the care of women with AIDS and advocates for a better outcome.     

Ethnic differences in reported unmet needs among male inpatients with severe mental illness

ACCESSIBLE SUMMARY: ? Literature suggests that ethnic minority groups are disadvantaged within current health care services in the UK. This study attempts to identify the rates and nature of unmet health and social needs across three ethnic groups. ? Inpatients of African ethnicity reported significantly less unmet needs than their White British counterparts. ? Unmet needs in the domains of psychotic symptoms, alcohol use and safety to self differed significantly across the three ethnic groups. ? Inpatients of White British heritage appeared to have more unmet needs and/or were more willing to disclose these compared to other ethnic groups. ? The ability to meet health and social needs is complicated by the presence of antisocial personality disorder and alcohol dependence. ABSTRACT: Health services are failing to meet the needs of ethnic minority groups with severe mental illness in the UK. Understanding these unmet social and health needs will assist service providers in developing culturally sensitive and responsive care pathways. Using a cross-sectional design, 165 service users were recruited from 10 acute inpatient wards across four South London boroughs. Needs were assessed using the Camberwell Assessment of Need Short Assessment Schedule and substance dependence and antisocial personality disorder were measured using the Alcohol Use Disorders Identification Test, Drug Use Disorders Identification Test and the Structured Clinical Interview for the Diagnostic and Statistical Manual for Mental Disorders. African, but not African-Caribbean, heritage continued to predict lower rates of reported unmet needs compared to White British (P < 0.001) following multivariate analysis. Different patterns of unmet needs were observed across ethnic heritage groups. Antisocial personality disorder and alcohol dependence were also independently associated with unmet needs. Consideration of a patient's ethnic identity and comorbidities is essential for effective needs assessment within psychiatric and mental health nursing.     

Facilitating the transition of adolescents with developmental disabilities: nursing practice issues and care

The purpose of this article is to provide an overview of salient issues that adolescents with developmental disabilities face as they approach adulthood. For nurses who provide services to this population of youth, knowledge of these significant issues is essential to developing a youth-centered transition plan that addresses their comprehensive health needs. Health care professionals, including pediatric nurses, have important roles as service coordinators, consultants, or direct service providers to ensure that the health-related transition needs of the youth are met. Transition assessment, planning, and intervention strategies that can be integrated into a comprehensive plan of care are discussed.     

To what extent are the needs of severely disabled people met by community rehabilitation services? A follow-up study

Purpose: To evaluate which needs of disabled people would be met over a one year follow-up period and to examine which factors would be predictive of identifying those people who had more needs met from those who had fewer needs met. Method: A follow-up study of a cohort of community dwelling disabled people (aged 16-65) from two NHS Health Districts in Southern England with contrasting patterns of rehabilitation provision, who had participated in a cross-sectional interview study one year previously which had assessed their met and unmet needs. The Southampton Needs Assessment Questionnaire was used to examine needs. Disability was evaluated with the OPCS Disability and Severity Scales and perceived health status with the SF-36. Results: Participation rate at follow-up was 92%. Of the 300 baseline unmet needs reported by 69 of the 77 participants 33% had been met at follow-up. People whose disability had increased more and/or whose mental health status had improved more had greater percentages of their baseline needs met. There was a non-significant trend for smaller percentages of baseline needs to be met in Basingstoke than in Southampton. Conclusions: At ground level, disabled people's views were taken into account, to some extent, in the provision of rehabilitation services. This input should be made at a higher level, in the overall shaping of services.     

Methodological Issues in Inclusive Intellectual Disability Research: A Health Promotion Needs Assessment of People Attending Irish Disability Services

Background This paper describes a novel combination of inclusive methods to evaluate health and health promotion needs of service users (clients) with intellectual disability. Sixty centres provide disability services to over 900 clients with intellectual disability in the East Coast Area Health Board region of Ireland (population approximately 325 000). This is the first known triangulated large‐scale approach to inclusive needs assessment of clients using regional disability services in Ireland. Method The research included interviewer‐directed surveys of 247 clients with intellectual disability (or advocates) and 180 clients with physical/sensory disability; focus groups for clients, service providers and carers; and a postal survey for centre managers. Modification of existing surveys was required for people with intellectual disability. Results Fifty‐six of 60 (93.3%) centres participated. The response rate at the client level was 98.8% (3/250 refusals). Health behaviours, likes and dislikes were well described by clients and advocates. Clients identified the need for more creative therapy, physical activity, relaxation therapy and social activities. Service providers and carers emphasized more the need for speech and language therapy, counselling, occupational therapy and physiotherapy. Conclusions Inclusive research methods can produce useful outcome measures of the health promotion needs of those with disability. Triangulation is valuable, where clients, carers and service providers are all involved in the research process.     

Differences in understanding of specialist palliative care amongst service providers and commissioners in South London

This paper describes a study that sought to identify service providers' and commissioners' understanding of specialist palliative care within the context of changing service provision in one area of South London. Using a formative evaluation framework, we examined the views of 44 providers and commissioners from statutory and voluntary health and social care services about their understanding of specialist palliative care services and, in particular, the remit of current service provision delivered by a Marie Curie Centre. Face-to-face audiotaped semi-structured interviews were conducted. A qualitative thematic analysis highlighted a number of issues including a lack of consensus about definitions of palliative care, ambivalence about referral procedures, and a lack of role clarity between specialist and generalist palliative care providers. The study took place within the real world context of changing services and economic pressures. This raises methodological issues about how services are evaluated and what terminology is used to describe end-of-life care. The study findings confirm that confusion about terminology and referral criteria remain major issues for clinical workers and organizations seeking to access services.     

Community nurses', home carers' and patients' perceptions of factors affecting venous leg ulcer recurrence and management of services

AIM: This study examines the feasibility of utilizing social service home carers (SSHC) to provide a collaborative approach with community nurses for the provision of leg ulcer aftercare in four National Health Service (NHS) Trusts. The purpose of this study was to gain insight into what community nurses and people with healed venous leg ulcers felt influenced leg ulcer recurrence. BACKGROUND: Studies have demonstrated that provision of community-based leg ulcer clinics has improved healing rates of venous leg ulcers, yet recurrence remains a problem. The reasons for this are far from clear, and further research is required before unequivocal support can be given to one approach to the provision of care for this client group. Collaborative approaches to the provision of leg ulcer aftercare are beginning to receive more attention. It has been recognized that social service health carers could be co-opted to provide essential aftercare once healing has occurred, although the logistics of this approach have not been fully explored. METHODS: This study was conducted in four NHS Trusts. Stage one used focus groups to explore the perceptions of district nurses (n = 15) and social service health carers (n = 15) of a leg ulcer shared care project and to gain insight into factors that they felt influenced recurrence. The second stage used semistructured interviews (n = 12) to explore the perceptions that people with healed leg ulcers have about factors influencing ulcer recurrence. FINDINGS: Key themes emerging from this study were: health promotion is perceived by community nurses and patients to be ineffective and leg ulcer aftercare services are fragmented. Organizational factors such as time constraints and limited resources were cited by community nurses and home carers as being responsible for high leg ulcer recurrence rates. Community nurses expressed a desire to delegate preventative aspects of leg ulcer care to home carers rather than participate in health promotion strategies to support healing behaviours. CONCLUSIONS: A strategy aimed at supporting healing behaviour in elderly people has the potential to reduce the recurrence of leg ulceration and improve quality of life. The findings suggest that such a strategy needs to rationalize delivery of leg ulcer aftercare to provide seamless care. It needs to improve carers' and patients' understanding of factors influencing leg ulcer recurrence and facilitate development of a more balanced professional--patient relationship.     

Evaluation of a community-based mental health drug and alcohol nurse in the care of people living with HIV/AIDS

There is a growing need for advanced practice mental health and drug and alcohol nursing roles in the care of people living with HIV/AIDS; however, limited publications address these domains. This study evaluated a community-based mental health drug and alcohol nurse role caring for people living with HIV/AIDS (Mental Health D&A Nurse) in a large not-for-profit district nursing organization providing care to people living with HIV/AIDS in an Australian city. Outcomes from a client assessment and 6–8-week follow-up by the Mental Health D&A Nurse are presented as captured by the Depression Anxiety Stress Scales (DASS 21), Alcohol, Smoking and Substance Involvement Screening Test (ASSIST), Health of the Nation Outcome Scales (HONOS) and WHOQoL BREF. Mean scores and caseness were analysed, and significant differences were found on the 'impairment' and 'social problems' subscales of the HONOS. Results of semi-structured interviews with clients describe effective and supportive mental health care and health-promoting education following visits by the Mental Health D&A Nurse. These positive findings support continuing implementation of the role within this community setting and indicate that even greater benefits will ensue as the role develops further. Findings are of interest to clinicians and policy makers seeking to implement similar roles in community-based HIV/AIDS care.     

To what extent are the needs of severely disabled people met by community rehabilitation services? A follow-up study

Purpose : To evaluate which needs of disabled people would be met over a one year follow-up period and to examine which factors would be predictive of identifying those people who had more needs met from those who had fewer needs met. Method : A follow-up study of a cohort of community dwelling disabled people (aged 16-65) from two NHS Health Districts in Southern England with contrasting patterns of rehabilitation provision, who had participated in a cross-sectional interview study one year previously which had assessed their met and unmet needs. The Southampton Needs Assessment Questionnaire was used to examine needs. Disability was evaluated with the OPCS Disability and Severity Scales and perceived health status with the SF-36. Results : Participation rate at follow-up was 92%. Of the 300 baseline unmet needs reported by 69 of the 77 participants 33% had been met at follow-up. People whose disability had increased more and/or whose mental health status had improved more had greater percentages of their baseline needs met. There was a non-significant trend for smaller percentages of baseline needs to be met in Basingstoke than in Southampton. Conclusions : At ground level, disabled people's views were taken into account, to some extent, in the provision of rehabilitation services. This input should be made at a higher level, in the overall shaping of services.     

HIV & AIDS in older adults

Many Americans mistakenly believe that older adults are not at risk for HIV/AIDS. Older people do not perceive themselves to be at risk for HIV infection, either. In reality, approximately 10% of AIDS cases are among people older than 50. Many health care providers lack an awareness of the risk of HIV/AIDS in the elderly population, and as a result, many older people with these conditions are misdiagnosed with other ailments. Major manifestations of HIV/AIDS in elderly adults include Pneumocystis carinii pneumonia, herpes zoster, tuberculosis, cytomegalovirus, oral thrush, Mycobacterium avium complex, and HIV dementia. Elderly HIV-positive women have special health concerns, such as cervical cancer. Nurses and nurse practitioners can heighten their colleagues' awareness of the existence of HIV/AIDS in the elderly population and educate their older patients on HIV/AIDS. Furthermore, information about sexuality and sexual practices of older adults should be incorporated into all health science curricula. Additional research is needed to determine the extent of the problem and how health care providers can best serve their older patients' needs.