Nutritional status of Ugandan women living with HIV/AIDS : anthropometry and body composition assessment

Human immunodeficiency virus (HIV) that leads to acquired immune deficiency syndrome (AIDs) reduces immune function, resulting in opportunistic infections and later death. Use of antiretroviral therapy (ART) increases chances of survival, however, with some concerns regarding fat re-distribution (lipodystrophy) which may encompass subcutaneous fat loss (lipoatrophy) and/or fat accumulation (lipohypertrophy), in the same individual. This problem has been linked to Antiretroviral drugs (ARVs), majorly, in the class of protease inhibitors (PIs), in addition to older age and being female. An additional concern is that the problem exists together with the metabolic syndrome, even when nutritional status/ body composition, and lipodystrophy/metabolic syndrome are unclear in Uganda where the use of ARVs is on the increase. In line with the literature, the overall aim of the study was to assess physical characteristics of HIV-infected patients using a comprehensive anthropometric protocol and to predict body composition based on these measurements and other standardised techniques. The other aim was to establish the existence of lipodystrophy, the metabolic syndrome, andassociated risk factors. Thus, three studies were conducted on 211 (88 ART-naïve) HIV-infected, 15-49 year-old women, using a cross-sectional approach, together with a qualitative study of secondary information on patient HIV and medication status. In addition, face-to-face interviews were used to extract information concerning morphological experiences and life style. The study revealed that participants were on average 34.1±7.65 years old, had lived 4.63±4.78 years with HIV infection and had spent 2.8±1.9 years receiving ARVs. Only 8.1% of participants were receiving PIs and 26% of those receiving ART had ever changed drug regimen, 15.5% of whom changed drugs due to lipodystrophy. Study 1 hypothesised that the mean nutritional status and predicted percent body fat values of study participants was within acceptable ranges; different for participants receiving ARVs and the HIV-infected ART-naïve participants and that percent body fat estimated by anthropometric measures (BMI and skinfold thickness) and the BIA technique was not different from that predicted by the deuterium oxide dilution technique. Using the Body Mass Index (BMI), 7.1% of patients were underweight (<18.5 kg/m2) and 46.4% were overweight/obese (≥25.0 kg/m2). Based on waist circumference (WC), approximately 40% of the cohort was characterized as centrally obese. Moreover, the deuterium dilution technique showed that there was no between-group difference in the total body water (TBW), fat mass (FM) and fat-free mass (FFM). However, the technique was the only approach to predict a between-group difference in percent body fat (p = .045), but, with a very small effect (0.021). Older age (β = 0.430, se = 0.089, p = .000), time spent receiving ARVs (β = 0.972, se = 0.089, p = .006), time with the infection (β = 0.551, se = 0.089, p = .000) and receiving ARVs (β = 2.940, se = 1.441, p = .043) were independently associated with percent body fat. Older age was the greatest single predictor of body fat. Furthermore, BMI gave better information than weight alone could; in that, mean percentage body fat per unit BMI (N = 192) was significantly higher in patients receiving treatment (1.11±0.31) vs. the exposed group (0.99±0.38, p = .025). For the assessment of obesity, percent fat measures did not greatly alter the accuracy of BMI as a measure for classifying individuals into the broad categories of underweight, normal and overweight. Briefly, Study 1 revealed that there were more overweight/obese participants than in the general Ugandan population, the problem was associated with ART status and that BMI broader classification categories were maintained when compared with the gold standard technique. Study 2 hypothesized that the presence of lipodystrophy in participants receiving ARVs was not different from that of HIV-infected ART-naïve participants. Results showed that 112 (53.1%) patients had experienced at least one morphological alteration including lipohypertrophy (7.6%), lipoatrophy (10.9%), and mixed alterations (34.6%). The majority of these subjects (90%) were receiving ARVs; in fact, all patients receiving PIs reported lipodystrophy. Period spent receiving ARVs (t209 = 6.739, p = .000), being on ART (χ2 = 94.482, p = .000), receiving PIs (Fisher’s exact χ2 = 113.591, p = .000), recent T4 count (CD4 counts) (t207 = 3.694, p = .000), time with HIV (t125 = 1.915, p = .045), as well as older age (t209 = 2.013, p = .045) were independently associated with lipodystrophy. Receiving ARVs was the greatest predictor of lipodystrophy (p = .000). In other analysis, aside from skinfolds at the subscapular (p = .004), there were no differences with the rest of the skinfold sites and the circumferences between participants with lipodystrophy and those without the problem. Similarly, there was no difference in Waist: Hip ratio (WHR) (p = .186) and Waist: Height ratio (WHtR) (p = .257) among participants with lipodystrophy and those without the problem. Further examination showed that none of the 4.1% patients receiving stavudine (d4T) did experience lipoatrophy. However, 17.9% of patients receiving EFV, a non-nucleoside reverse transcriptase inhibitor (NNRTI) had lipoatrophy. Study 2 findings showed that presence of lipodystrophy in participants receiving ARVs was in fact far higher than that of HIV-infected ART-naïve participants. A final hypothesis was that the prevalence of the metabolic syndrome in participants receiving ARVs was not different from that of HIV-infected ART-naïve participants. Moreover, data showed that many patients (69.2%) lived with at least one feature of the metabolic syndrome based on International Diabetic Federation (IDF, 2006) definition. However, there was no single anthropometric predictor of components of the syndrome, thus, the best anthropometric predictor varied as the component varied. The metabolic syndrome was diagnosed in 15.2% of the subjects, lower than commonly reported in this population, and was similar between the medicated and the exposed groups (χ 21 = 0.018, p = .893). Moreover, the syndrome was associated with older age (p = .031) and percent body fat (p = .012). In addition, participants with the syndrome were heavier according to BMI (p = .000), larger at the waist (p = .000) and abdomen (p = .000), and were at central obesity risk even when hip circumference (p = .000) and height (p = .000) were accounted for. In spite of those associations, results showed that the period with disease (p = .13), CD4 counts (p = .836), receiving ART (p = .442) or PIs (p = .678) were not associated with the metabolic syndrome. While the prevalence of the syndrome was highest amongst the older, larger and fatter participants, WC was the best predictor of the metabolic syndrome (p = .001). Another novel finding was that participants with the metabolic syndrome had greater arm muscle circumference (AMC) (p = .000) and arm muscle area (AMA) (p = .000), but the former was most influential. Accordingly, the easiest and cheapest indicator to assess risk in this study sample was WC should routine laboratory services not be feasible. In addition, the final study illustrated that the prevalence of the metabolic syndrome in participants receiving ARVs was not different from that of HIV-infected ART-naïve participants.

Development of the palliative care needs assessment tool (PC-NAT) for use by multi-disciplinary health professionals

Needs assessment strategies can facilitate prioritisation of resources. To develop a needs assessment tool for use with advanced cancer patients and caregivers, to prompt early intervation. A convenience sample of 103 health professionals viewed three videotaped consultations involving a simulated patient, his/her caregiver and a health professional, completed the Palliative Care Needs Assessment Tool (PC-NAT) and provided feedback on clarity, content and acceptability of the PC-NAT. Face and content validity, acceptability and feasibility of the PC-NAT were confirmed. Kappa scores indicated adequate inter-rater reliability for the majority of domains; the patient spirituality domain and the caregiver physical and family and relationship domains had low reliability. The PC-NAT can be used by health professionals with a range of clinical expertise to identify individuals' needs, thereby enabling early intervention. Further psychometric testing and an evaluation to assess the impact of the systematic use of the PC-NAT on quality of life, unmet needs and service utilisation of patients and caregivers are underway.

What should I say?: Qualitative findings on dilemmas in palliative care nursing

The nursing literature suggests that talking and listening to patients about issues associated with death and dying, is both important and difficult, and may be improved with training. This discussion presents the results of recent nursing research to confirm, and elaborate on, this theme. In this research participants touched on many central issues in communicating with patients that included articulating a sense of discomfort and inadequacy about the whole process, detailing the innumerable blocks to open communication [e.g., interference, denial, unrealistic optimism, resistance, collusion and anger] and sharing their sense of success and failure. The insights of nurses who participated in this research testify to the ongoing need to prioritize the development of nursing skills and support in this challenging but important area.

Mediating conflict and control : practice challenges for nurses working in palliative care

A work-based professional development program was offered to a group of registered nurses working in palliative care. The goal of the program was to improve skills in psychosocial care (Yates et al., 1996). Participants were encouraged to reflect critically on their practice experience within a group setting. The focus of the group discussion and reflection were shared practice incidents. Each participant was given the opportunity to identify and describe an incident from their professional practice that presented a challenging issue within palliative nursing. This paper explores the themes of conflict and control, evident within the collection of fifteen practice incidents and discusses the nurses role as mediator. The concepts of patient advocacy and professional autonomy are challenged through the nurses experience of providing care within a hierarchical and bureaucratic health service. The outcome of reflection for the organization is most effective when shared experience and collective action (rather than individual practice) are the focus.

Exploring empathy as a variable in the evaluation of professional development programmes for palliative care nurses

Research indicates that empathy, a quality regarded as fundamentally important to nursing practice, is a teachable skill. Because empathic nurse-patient relationships are particularly important in the care of the terminally ill, this has direct relevance to the professional development of palliative care nurses. This article discusses the place of empathy as a criterion variable in the evaluation of a professional development program for palliative care nurses introduced at the Centre for Mental Health Nursing Research at Queensland University of Technology, Brisbane, Australia. A modified version of the Staff-Patient Interaction Response Scale (SPIRS) was used as a pre- and postintervention measure to assess the expressed empathy of the participating nurses. The modifications to SPIR and its coding system to make it suitable for palliative care nursing, and the mechanisms for improving and evaluating the reliability of this instrument will be discussed. The full description of this particular modification of SPIRS for palliative care research is provided as an example of how this instrument could be used in projects for which nurses undertake the difficult task of providing compassionate care to the terminally ill.

Design of a professional development programme for palliative care nurses (Part Two)

Yates et al (1996) provided a review of the literature on educational approaches to improving psychosocial care of terminally ill patients and their families and suggested that there was an urgent need for innovation in this area. A programme of professional development currently being offered to 181 palliative care nurses in Queensland, Australia, was also described. This paper presents research in progress evaluating this programme which involves use of a quasi-experimental pre-post test design. It also includes process and outcome measures to assess effectiveness in improving the participant's ability to provide psychosocial care to patients and families. Research examining the effectiveness of various educational programmes on care of the dying has offered equivocal results (Yates et al 1996). Degner and Gow (1988a) noted that the inconsistencies found in research into death education result from inadequate study designs, variations in the conceptualisation and measurement of the outcomes of the programmes and flaws in data analysis. Such studies have often lacked a theoretical basis, few have employed well-controlled experimental designs, and the programme outcomes have generally been limited to the participant's 'death anxiety', or other death attitudes which have been variously defined and measured. Whilst Degner and Gow (1988b) have reported that undergraduate nursing students who participated in a care of the dying educational programme demonstrated more 'approach caring' behaviours than a control group, the impact of education programmes on patient care has rarely been examined. Failure to link education to nursing practice and subsequent clinical outcomes has, however, been seen as a major limitation of nursing knowledge in this area (Degner et al 1991). This paper describes an approach to researching the effectiveness of professional development programmes for palliative care nurses.

Improving psychosocial care: a professional development programme

Despite the numerous reports of difficulties experienced by health care providers in providing psychosocial care to terminally ill patients and their families, few studies have yet been undertaken to examine the effectiveness of different educational approaches to addressing these issues. The aim of this paper is to describe a programme of professional development for palliative care nurses, which is currently being offered to 181 registered nurses in Queensland, Australia. The programme is based on an action learning model and is designed to facilitate processes of reflection and peer consultation. In Part One of this paper, a review of this literature is presented to provide the background and rationale for the programme design. Details of the research programme developed to evaluate the programme will be presented in Part Two of this paper, which is to be published in the next issue of this Journal. Surveys of health professionals suggest that the demands of working with terminally ill patients are associated with a great deal of stress (Beaton and Degner 1990, Seale 1992, Vachon 1995), and emotional burden, as they are confronted with their patients' physical and emotional suffering over extended periods of time (Ullrich and Fitzgerald 1990). Key areas of concern (Lyons 1988, Bramwell 1989, Seale 1992, Copp and Dunn 1993, Wilkinson 1995) include: * Handling questions and conversations with dying patients. * Dealing with ethical and moral issues. * Handling emotions. * Giving hope. * Providing spiritual care and bereavement support. * Confronting team communication problems.

Pain : the views of elderly people living in long term residential care settings

While an individual's beliefs and attitudes have long been considered important factors in how people respond to pain, few studies have attempted to provide in-depth descriptions of the nature of such pain beliefs and attitudes The aim of this research was to investigate the views of pain and pain management practices held by elderly people living in long-term residential care settings Ten 60–90 minute focus group interviews, each involving around five elderly people, were conducted in four large, long-term residential care settings in Brisbane, Australia Categories of beliefs and attitudes regarding pain were identified following analysis of the verbatim transcripts of these interviews Findings suggest that many elderly people living in long-term residential care settings may have become resigned to pain, that they are ambivalent about the benefit of any action for their pain and that they may be reluctant to express their pain Implications of these beliefs and attitudes are discussed

Constructions of children's needs in informal kinship care in rural China

Kinship care is the oldest form of alternative child care in the world. Recent years have witnessed a significant increase in the number of children being placed in kinship care across Western countries. However, in contrast to rapid knowledge advances about formal kinship care, far less is known about the needs of children in informal kinship care, especially in Asian contexts. This thesis and the study upon which it is formed sought to redress this knowledge gap. Qualitative approach was adopted to explore social constructions of children in informal kinship care in rural China. Parents in China seeking work in cities have left behind around 58 million rural children, mostly with relatives and without the involvement of the state. The present study examined caregivers’ and school personnel’s understandings of these school-age children’s needs through semi-structured interviews with 23 kin caregivers and five school personnel in Shijiapu Town, Jilin Province, China. The central question that guided the whole study is: What are the needs of children in informal kinship care in rural Jilin Province, China? Interpretative Phenomenological Analysis was used to categorise and interpret the qualitative data. Based on participants’ constructions, this study developed a need model with eight themes. They are: (1) emotional needs and mental health, (2) relationships, (3) empowerment and agency, (4) safety, (5) education, (6) basic care, (7) physical health, and (8) personal development. These needs are grounded in the Chinese context, and therefore a good understanding of Chinese culture is essential to address them. The first four needs particularly capture children’s separations from their parents, and the rest are more general, and can be applied to most Chinese children. To meet the most important need for children left behind, namely education, these caregivers determined that others needs sometimes have to be compromised. Children left behind are a vulnerable group in contemporary rural China, and their diverse needs are attended to by several groups. This study found that as children’s closest kin while their parents are away, caregivers play a vital role in salving the children’s emotional loss. Caregivers’ love and familial obligations strongly motivate them to care for these children, and sensitivity to social stigma makes them strive to show their love and care to compensate for perceived differences between these children and their peers. Caregivers’ efforts to make children happy, however, were sometimes criticised by some school personnel, who see this as spoiling. The conflicting viewpoint between caregivers and school personnel indicate their different roles and perceptions in children’s lives, and the latter influence these children in a more authoritative way. Informal kinship care has several advantages of addressing children’s needs, especially their needs for emotional bonds with family. Community-based kin networks provide children with both emotional and material support. However, these advantages sometimes are restricted by caregivers’ child rearing capacity. Having developed a model of the needs of children left behind in China, this study suggests that caregivers, school personnel and government social services work in harmony to be child-centred and meet these children’s diverse needs. The unmet needs of children left behind mainly result from unbalanced development between urban and rural China, therefore, it is imperative to enhance state policies and programs that improve wellbeing for this growing part of China’s people.