Jeanne Katz

Debates and Dilemmas in Promoting Health

In this age of modern era, the use of internet must be maximized. Yeah, internet will help us very much not only for important thing but also for daily activities. Many people now, from any level can use internet. The sources of internet connection can also be enjoyed in many places. As one of the benefits is to get the on-line debates and dilemmas in promoting health book, as the world window, as many people suggest.

Dying in long-term care facilities: support needs of other residents, relatives, and staff.

This paper explores the support needs of residents, relatives, and care staff when someone dies in a facility for older people. The authors draw on the qualitative findings from an English study, which investigated the case for applying the principles and practices of palliative care to people dying in these settings. Relatives need practical as well as emotional support, which is often not met adequately by nursing home staff. Managers varied in the extent to which they recognized other residents’ emotional needs or supported relatives. Care staff members acknowledged needing practical and emotional support, but management was often unable to deliver it. Lack of training in recognizing and addressing needs in addition to financial and staffing constraints were factors that prevented managers from providing support for staff, residents, and relatives.

Patient and proxy measurement of quality of life among general hospital in-patients with dementia

Background: We aimed to investigate quality of life ratings among people with varying severity of dementia and their carers, recruited in general hospital. Method: We recruited 109 people with dementia, and their proxies (carers), from psychiatric referrals of inpatients in two general hospitals in England. From patients, we gathered data on quality of life (QoL-AD and EQ5-D) and depressive symptoms, and from proxies we gathered data on patient quality of life (Proxy QoL-AD and EQ5-D), severity of dementia, activities of daily living, physical illness and depressive symptoms, and on carer stress. Results: Completion rates for both measures were progressively lower with increasing dementia severity. Patients rated their quality of life more highly than proxies on Qol-AD (patients = 32.2, CI = 30.7–33.7, proxies = 24.7, CI = 23.8–26.0, p < 0.001) and on EQ5D (patients = 0.71, CI = 0.64–0.77, proxies = 0.30, CI = 0.22–0.38, p < 0.001). For proxy EQ5D, impaired instrumental ADLs (p = 0.003) and more severe dementia (p = 0.019) were associated with ratings, while for proxy QoL-AD, only more severe dementia (p = 0.039) was associated with ratings. Lower patient EQ-5D scores were independently associated only with carer stress (p = 0.01). Lower patient QoL-AD scores were associated with patient depression (p = 0.001), impaired activities of daily living (p = 0.02) and proxy psychiatric symptoms (p = 0.002). Conclusions: Among patients with moderate to severe dementia in general hospital, proxy measures of quality of life are the only practical option. Patients and proxies appear to have very different concepts of quality of life in dementia.

Learning to see: lessons from a participatory observation research project in public spaces

This article outlines the development and implementation of participatory research methodology centred on observational techniques. It discusses theoretical understandings of the methodology and how it works in practice. The research explored the use of public spaces by different social, ethnic and activity groups across the course of a 12‐month period, drawing on the experiences of, and data collected by local non‐academic researchers who were trained in a non‐participatory semi‐structured observation method. The article discusses how this method was developed and implemented and considers some of the issues around how participatory research works in practice.

Hearing the voices of people with high support needs

This article draws on findings from a study commissioned by the British charity, The Joseph Rowntree Foundation, to explore the needs and aspirations of older people who for whatever reason require a high degree of assistance. The study explored the personal aspirations of a small diverse sample (n=26) of hitherto un-researched people living in different parts of the UK. Most were over 85 years of age, with varied ethnicity, health status, social care needs, financial status and lifestyle. Many participants were receiving input from statutory health and social care services and were perceived by others and often themselves to have high support needs. Accessible research methods were used to enable participants to specify those factors for well-being most central to their own lives and preferences. The study found commonalities of aspiration in relation to physical, social and psychological aspects of their lives, but also unique descriptions of their individual concerns. In striving to maintain a sense of self worth, participants accepted that some choices were not realistic for them personally. Positive relationships with care-givers were an essential enabler for some. In many cases negotiation has the potential to produce simple and cost-effective ways of addressing individual aspirations and improving quality of life.

A 12-month follow-up study of people with dementia referred to general hospital liaison psychiatry services

BACKGROUND new services for patients with dementia in general hospitals are being widely developed. Little is known of outcomes after hospital for such patients. OBJECTIVE to establish outcomes for patients with dementia referred to general hospital psychiatric services. DESIGN prospective cohort study. SETTING two UK general hospitals. SUBJECTS referrals with dementia to liaison psychiatric services. METHOD eligible referrals (n = 112), and their carers, were assessed during admission, and at 6 and 12 months, using battery of health measurements. RESULTS mortality at 6 months was 31% and at 12 months 40%. At baseline, 13% lived in a care home, rising to 84% by 6 months. Quality of life scores remained stable over 12 months, while carer stress fell significantly. Baseline clinical and demographic variables did not predict quality of life or carer stress at 6 and 12 months. CONCLUSIONS dementia liaison services in general hospitals currently focus on poor outcome cases.

“I knew I had something bad because no-one spoke about it” – disclosure discovery: Experiences of young people with perinatally acquired HIV in the UK

In the United Kingdom, most young people born with HIV now reach adulthood. Although the clinical trajectory of HIV in this unique group is now more predictable, young peoples’ perspectives of growing up with HIV are less known. This qualitative study explored the experiences of young people growing up with HIV and considered issues including relationships, strategies for managing and living with HIV and perspectives on their futures. A total of 28 young people (15–24 years old) with perinatally acquired HIV were recruited from a specialist adolescent clinic. In depth interviews with participants were recorded, transcribed verbatim and analysed using a grounded theory approach and assisted by Nvivo software. Participants consistently identified the disclosure process of their HIV status as a crucial marker in their illness trajectory, defining their long-term adjustment to their illness. Some participants discovered their HIV status by accident; of the others who were informed directly, a third knew they suffered from a serious condition and several reported knowing or guessing their HIV status before they were formally told. Participants reveal that despite worrying about their health, they do not initiate discussion with adults. They perceive that partly due to their personal experiences, family members also refrain from discussing HIV with them. This silence results in young people being isolated whilst waiting for permission to talk. When they are told, they are warned to remain silent as HIV is perceived to be stigmatised. Adults refraining from communicating about young peoples’ status at an appropriate time may model young peoples’ future disclosure to others. Greater awareness is required of the importance that professionals communicate directly with young people, who in turn may need support to facilitate communication with their families and peers. The perspective of young people is crucial to improve practice, develop services and reduce isolation for those growing up with HIV.

Changes in Attitudes and Practice toward Dying People after Completion of a U.K.-Based Distance Learning Death and Dying Course

K260 is an Open University distance learning course in death and dying that incorporates historical, anthropological, sociological, and psychological approaches to death and dying. The course deals with principles and practices of palliative care, communication with dying people and their families, bereavement and grief, and moral, ethical, and legal issues involved in death and dying. Through a qualitative analysis of respondent written comments regarding how they would respond to a dying person, this study sought to determine how students felt their attitudes and practice had changed as a result of studying this course in terms of how they would respond to a dying person. Six themes emerged that individually and in combination highlight important ways in which respondents perceived their response toward a dying person had altered as a result of completing K260. These themes are awareness, understanding, and insight; individualized care and patient autonomy; self-awareness; ability to communicate emotionally; ability to communicate practically; and practical knowledge and resources developed.

Service utilisation and family support of people with dementia: a cohort study in England

This study aimed to compare costs of caring for people with dementia in domiciliary and residential settings, central England.

‘You're HIV Positive’: Perinatally infected young people's accounts of the critical moment of finding out their diagnosis

This paper presents the recollections of 28 young people (15–24 years old) of formally learning that they had acquired HIV perinatally. Prior to the naming of their illness, many participants had experienced repeated biographical disruption through ill health and other major life events. However, the critical moment in their HIV trajectory was when they were told their diagnosis. How information about their diagnosis was managed previously, often disguised, combined with the ways in which the disclosure process was handled communicated to young people the inherent dangers and stigma associated with revealing their HIV status to others. The formal disclosure occasion also signalled to most participants the route of their HIV infection as well as previously hidden health information about family members. Although some young people discovered their diagnosis in an unplanned way, most described the disclosure of their HIV status as a structured event, usually a formal telling with those in authority naming the condition. This even applied to those for whom the discovery that they were HIV positive was a process that happened over time. This paper describes their memories of the disclosure event which for half took place over the age of 12. They received messages conveying the imperative to keep this information a secret to avoid being stigmatised and to protect themselves and their families. They described subsequent feelings of isolation and distress. Policy-makers and clinicians need to consider the WHO disclosure recommendations whilst taking into account individual circumstances.