Lived experience of gay men caring for others with HIV/AIDS : living, loving and dying in the era of HIV/AIDS

This thesis explored gay male carers’ experience of caring for their partner, brother or friend who had HIV/AIDS. Through using phenomenological methodology (van Manen, 1990), the day-to-day caring experiences were uncovered. The data gathered were then analysed through a nursing ‘lens’, with the concept of stigma as an anchoring point. The dual stigmas of homophobia and AIDS phobia impacted on the daily lives of these men as they cared for their loved one. The research identified six themes. These were: 1) the relationship; 2) coping with HIV and AIDS; 3) the corporal impact of HIV/AIDS; 4) experiences of carers including the absence of others; 5) living daily with the virus: Demands of people living with HIV/AIDS (PLWHA); and 6) saying goodbye, but wanting to keep the memory alive. The caring these men undertook, for which they were frequently unprepared, was intensive and complex, but because of their commitment and love they battled on. Because of a sense of shame associated with AIDS phobia on the part of the PLWHA, the carer often had to undertake this care in isolation, without support from family, friends or home health care agencies. The carers struggled with not only the demands of day-to-day care, but also with non-acceptance from family, both of the nature of the relationship with their partner and of their homosexuality. Family members were forced, often with great difficulty, to acknowledge the close commitment the men had to each other. Recognition that one had a terminal disease, HIV/AIDS was also required. The fear of potential transmission was high among carers, friends and family members. Notably, there was an absence of blame on the part of the carer towards his partner for contracting HIV/AIDS. The physical decline and marking of the body further stigmatised the PLWHA, which added to carers’ burdens. They endeavoured to minimise the physical decline in their partner, so he could continue to pass as healthy, and attempted to make the day-to-day living as normal as possible. The methods of combating weight loss and opportunistic infections meant frequent medical appointments, complex intensive medical procedures and help with personal care, which was undertaken at home largely without support from health care staff. Carers frequently struggled also with their partner’s denial of being ill. One strategy all carers used was to escape with their partners from their everyday life in Melbourne and attempt metaphorically to leave the HIV/AIDS behind; this was a time when they could rekindle their life together as it was before HIV/AIDS came into their lives. Some carers chose to holiday without their partner, to give themselves a break from the day-to-day caring, while others planned and took holidays with their partner. The decline of the health in the PLWHA meant that family members had to recognise and accept both the nature of the relationship and the presence of the disease. This recognition and acceptance often came only when the partner was very ill, even at the point of dying. Carers and their partners discussed the potential use of euthanasia, as a means of ending the final phase of life with some dignity. One carer and his partner used euthanasia, despite its illegal status. The main concern for all carers was providing comfort and a reduction in the pain associated with HIV/AIDS for the partner. The widespread grief associated with HIV/AIDS was evident amongst these carers. All had known other gay men who had died, some carers own partner had died, or was about to die. There was an overwhelming sense of grief, which at times was repressed as a means of coping day-to-day. All carers felt it was important and necessary to remember those lost to HIV/AIDS through the various public memorials, as they did not want their partner to be just another faceless person lost to this disease. This phenomenological study of carers’ experience highlights the need for health care workers to be aware of the differing strategies that gay men use to cope with HIV/AIDS. While it may seem that the carers are coping with care of their partner, the outer façade is not always an accurate portrayal of the true situation. Health care workers should enquire as to the assistance these carers need from health care services in order to continue to care for their loved one. Such assistance can be the simple recognition of the partner and acceptance of them as part of the PLWHA’s network; this inclusion and acceptance is half the battle.

Intelligent clothing for automated recognition of human physical activities in free-living environment

This paper presents an intelligent clothing framework for human daily activity recognition using a single waist-worn tri-axial accelerometer sensor coupled with a robust pattern recognition system. The activity recognition algorithm is realized to distinguish six different physical activities through three major steps: acceleration signal collection/pre-processing, wavelet-based principle component analysis, and a support vector machine classifier. The proposed activity recognition method has been experimentally validated through two batches of trials with an overall mean classification accuracy of 95.25 and 94.87%, respectively. These results suggest that the intelligent clothing is not only able to learn the activity patterns but also capable of generalizing new data from both known and unknown subjects. This enables the proposed intelligent clothing to be applied in a comfortable and in situ assessment of human physical activities, which would open up new market segments to the textile industry.

Driving down daily step counts: the impact of being driven to school on physical activity and sedentary behavior

This study investigated whether being driven to school was associated with lower weekday and weekend step counts, less active out-of-school leisure pursuits, and more sedentary behavior. Boys aged 10–13 years (n = 384) and girls aged 9–13 years (n = 500) attending 25 Australian primary schools wore a pedometer and completed a travel diary for one week. Parents and children completed surveys capturing leisure activity, screen time, and sociodemographics. Commute distance was objectively measured. Car travel was the most frequent mode of school transportation (boys: 51%, girls: 58%). After adjustment (sociodemographics, commute distance, and school clustering) children who were driven recorded fewer weekday steps than those who walked (girls: –1,393 steps p < .001, boys: –1,569 steps, p = .009) and participated in fewer active leisure activities (girls only: p = .043). There were no differences in weekend steps or screen time. Being driven to and from school is associated with less weekday pedometer-determined physical activity in 9- to 13-year-old elementary-school children. Encouraging children, especially girls, to walk to and from school (even for part of the way for those living further distances) could protect the health and well-being of those children who are insufficiently active.

Caffeine increases sugar-sweetened beverage consumption in a free-living population: a randomised controlled trial

Excessive sugar-sweetened beverage (SSB) consumption has been associated with overweight and obesity. Caffeine is a common additive to SSB, and through dependence effects, it has the potential to promote the consumption of caffeine-containing foods. The objective of the present study was to assess the influence that caffeine has on the consumption of SSB. Participants (n 99) were blindly assigned to either a caffeinated SSB (C-SSB) or a non-caffeinated SSB (NC-SSB) group. Following randomisation, all participants completed a 9 d flavour-conditioning paradigm. They then completed a 28 d ad libitum intake intervention where they consumed as much or as little of C-SSB or NC-SSB as desired. The amount consumed (ml) was recorded daily, 4 d diet diaries were collected and liking of SSB was assessed at the start and end of the intervention. Participants (n 50) consuming the C-SSB had a daily SSB intake of 419 (sd 298) ml (785 (sd 559) kJ/d) over the 28 d intervention, significantly more than participants (n 49) consuming the NC-SSB (273 (sd 278) ml/d, 512 (sd 521) kJ/d) (P< 0·001). A trained flavour panel (n 30) found no difference in flavour between the C-SSB and NC-SSB (P>0·05). However, participants who consumed the C-SSB liked the SSB more than those who consumed the NC-SSB (6·3 v. 6·0 on a nine-point hedonic scale, P= 0·022). The addition of low concentrations of caffeine to the SSB significantly increases the consumption of the SSB. Regulating caffeine as a food additive may be an effective strategy to decrease the consumption of nutrient-poor high-energy foods and beverages.

Cultural and social factors and quality of life of Maori in advanced age. Te puawaitanga o nga tapuwae kia ora tonu - Life and living in advanced age: a cohort study in New Zealand (LiLACS NZ)

AIM: To establish 1) the socioeconomic and cultural profile and 2) correlates of quality of life (QOL) of Maori in advanced age. METHOD: A cross sectional survey of a population based cohort of Maori aged 80-90 years, participants in LiLACS NZ, in the Rotorua and Bay of Plenty region of New Zealand. Socioeconomic and cultural engagement characteristics were established by personal interview and QOL was assessed by the SF-12. RESULTS: In total 421 (56%) participated and 267 (63%) completed the comprehensive interview. Maori lived with high deprivation areas and had received a poor education in the public system. Home ownership was high (81%), 64% had more than 3 children still living and social support was present for practical tasks and emotional support in 82%. A need for more practical help was reported by 21%. Fifty-two percent of the participants used te reo Maori me nga tikanga (Maori language and culture) daily. One in five had experienced discrimination and one in five reported colonisation affecting their life today. Greater frequency of visits to marae/sacred gathering places was associated with higher physical health-related QOL. Unmet need for practical help was associated with lower physical health-related QOL. Lower mental health-related QOL was associated with having experienced discrimination. CONCLUSION: Greater language and cultural engagement is associated with higher QOL for older Maori and unmet social needs and discrimination are associated with lower QOL.