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PubMed2006

Refinement and reduction of the Impact of Psoriasis Questionnaire: classical test theory vs. Rasch analysis.

BACKGROUND: Quality of life instruments are increasingly important in assessing disease severity. However, some of these measurements have been developed on a more or less ad hoc basis. Although not well standardized, psychometric analyses can be used to retest, refine and shorten existing quality of life instruments. OBJECTIVES: To psychometrically test and refine the Impact of Psoriasis Questionnaire (IPSO) and to compare the results of two different statistical approaches. PATIENTS AND METHODS: Among 792 psoriasis patients who were included in the PUVA Follow-up Study, we used classical test theory (CTT) and Rasch analysis to test and optimize the IPSO. Thereafter, two shortened versions of the IPSO derived from these models were compared. RESULTS: CTT analyses of the original IPSO demonstrated suboptimal item performance for six of 16 items and inappropriate subscaling. In contrast to the original four subscales, factor analysis of the CTT version yielded three subscales (mental functioning, mental wellbeing and stigmatization). The Rasch approach, which included ordering of thresholds, differential item functioning and item fit, resulted in a unidimensional 11-item questionnaire. Although the two new versions of the IPSO shared only six items, both reflected the original IPSO well. However, several arguments such as lower correlation coefficients, higher Cronbach's alpha, ordered thresholds, unidimensionality and fewer differences among subgroups of patients suggested that the Rasch version of the IPSO may be the preferred instrument to use. CONCLUSIONS: The IPSO can be improved and shortened and the Rasch-reduced version of this instrument is likely to assess the psychosocial impact of moderate to severe psoriasis on patients' lives best because it is a short, reliable and unidimensional measurement.

Adult↗
PubMedDate not supplied

Integration.

The problems of intergrating the disabled child in the ordinary school are examined. The child's adaptation and adjustment are briefly discussed and the influence on these of the home, medical and educational services is considered. Handicap is seen to be created by a combination of the functional limitations imposed by the disability and by the reaction of society to it. Successful integration is considered to be in some way dependent upon efforts which will reduce both this secondary socially induced handicap and also any peer group stigmatization. Positive professional attitudes and intensive family centered support and guidance are considered essential to the successful habilitation of the disabled child.

Adaptation, Psychological↗
PubMed2004

The psychological impact of cutaneous leishmaniasis.

A psychiatric disorder would be associated with extensive, unsightly lesions on exposed body parts. Cutaneous leishmaniasis (CL) has long been endemic in Sanliurfa and is called 'beauty scar'. The aim of this study was to determine psychological impact of CL. Patients with active CL, with CL that had healed with scaring, and healthy controls were included in this case-control study. The Hospital Anxiety Depression Scale (HAD), Body Image Satisfaction Scale (BIS), and Dermatology Quality of Life Scale (DQL) assessments were performed to determine the psychological effect of CL. The patients with CL had significantly higher HAD anxiety and depression subscale scores than the control groups. Patients with CL have decreased body satisfaction and lower quality of life than those in the control group. It was found that CL patients with active lesions have the lowest quality of life score than other groups. CL lesions on exposed body parts such as the face and hands, active CL for more than 1 year, permanent scar formation, and social stigmatization cause anxiety, depressive symptoms, decreased body satisfaction and quality of life in CL patients.

Adolescent↗
PubMed2006

Clinical implications of emerging pathogens in haemophilia: the variant Creutzfeldt-Jakob disease experience.

The impact of variant Creutzfeldt-Jakob disease (vCJD) on the clinical practice of haemophilia in the UK is coloured by the haemophilia community's experience of hepatitis C virus and human immunodeficiency virus (HIV) transmission via plasma-derived therapies in the 1980s, when the delay in recognizing and acting on the potential risks cost many patients their lives and left others to manage another chronic disease. This crisis prompted organisations such as the United Kingdom Haemophilia Centre Doctors' Organisation to advocate for the introduction of haemophilia therapies that would not be susceptible to contamination with blood-borne pathogens. After the identification of vCJD in 1996, a number of public health measures were taken in response to a government-sponsored vCJD risk assessment, and following reports of transfusion-transmission of vCJD, additional guidelines have been developed to prevent person-to-person transmission, some of which may impact the quality and availability of medical and surgical care. Variant CJD has had a significant negative effect on the UK haemophilia community, shaking patient confidence in the therapies they have received over the last 21 years, affecting the quality of care and creating the risk of stigmatizing the community as it was in the 1980s. As with HIV and vCJD, emerging blood-borne infectious agents will likely affect blood and blood-derived therapies well before we become aware of its presence. As a result, only therapies with the lowest level of risk should be used for care of patients with haemophilia.

Animals↗
PubMed1996

Postmodernism, health and illness.

This paper examines the value of drawing on ideas from poststructuralism and postmodernism in an attempt to understand the relationship between health, culture and society. Medical and professional discourses have come under increasing criticism for being uncaring, stigmatizing and disempowering. This paper supports a postmodernist approach which allows analysis of the fabrication of 'health', 'illness' and 'patient' subjectivity and the effect of the inscription on the body. It is suggested that health care professionals need to be more reflexive about their own knowledge claims and to resist the discursive practices which disempower and reduce choice.

Culture↗
PubMed2006

Perspectives and experiences of homeless young people.

AIM: This paper reports a study describing the experiences and perspectives of homeless young people as research participants. BACKGROUND: Worldwide, homeless young people are an especially vulnerable group due to their age, socio-economic disadvantage, and stigmatized status, and can suffer from human rights abuses. Researchers and advocates have noted that we know relatively little about the effects of research participation on adolescents in general, and much less about marginalized adolescents such as homeless young people; nor do we know about their perceptions and experiences as research participants. There is a lack of studies reported to help guide the ethical conduct of research with homeless young people. METHODS: Individual interviews with 30 street and clinic-based homeless young people aged 15-23 years and two focus groups with a total of 13 additional homeless young people were conducted in a large West-coast city in the United States of America. The study took place between January and June 2003. Interviews and focus groups were tape-recorded, transcribed, preliminarily coded, with final coding crosschecked and verified with a second researcher. FINDINGS: The majority of young people reported positive experiences as research participants in the past. None reported coercive research experiences; however, many stated that they would have liked more information about how the data they provided would be used by the researchers. All participants reported that it was important to be provided with research incentives, and thought that small monetary or pre-paid phone cards were appropriate incentives. They did express concerns that larger research incentives could be coercive and harmful for some homeless young people. CONCLUSION: Researchers working with homeless young people should seek greater input from them on the overall design of the study, especially concerning the appropriate use of research incentives.

Adolescent↗
PubMed2006

Empathy, inclusion and enclaves: the culture of care of people with HIV/AIDS and nursing implications.

AIM: This paper reports an empirical research study investigating specific features of the culture of care on a specialized unit supporting people living with human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS). BACKGROUND: The anxiety felt by healthcare workers coming into contact with people living with HIV and AIDS (PLWHA) has been recognized in numerous studies. There is often an amplified notion of threat and a worldview fuelled by stereotypes, which inevitably leads to negative attitudes and stigmatization. METHODS: An ethnographic approach was used, including a 14-month period of observation and 31 semistructured interviews. The data were collected during 2000 and 2001 in a large teaching hospital in the United Kingdom. FINDINGS: Carers working on this unit who regularly contributed to the care of this client group had a broad range of experience and in many cases had chosen to work in the field. They worked within a social context that had a high level of egalitarianism, a view of PLWHA that appeared more positive and less pejorative than others, and a strongly empathetic approach accompanied by close engagement with the client group. CONCLUSION: Using nursing staff specially prepared for the care of PLWHA could be the most effective way to minimize stigma and discrimination against this client group in the healthcare sector.

Anxiety↗
PubMed2006

Service users' experiences of 'as needed' psychotropic medications in acute mental healthcare settings.

AIMS: This paper reports a study which aimed to explore service users' views and experiences of the processes associated with the prescription and administration of 'as needed' (p.r.n.) psychotropic medications in acute mental health settings. BACKGROUND: Few studies have explored the use of 'as needed' medication in acute mental healthcare settings. Such medication is frequently requested by service users, but the literature is unclear about the reasons for these requests or service users' experiences of this treatment. METHOD: A convenience sample of 22 inpatients participated in face-to-face semi-structured interviews exploring their treatment experiences of 'as needed' psychotropic medication in acute mental health settings in a large city in the United Kingdom in 2005. Thematic content analysis was carried out. RESULTS: Interviewees highlighted the value of 'as needed' medications. However, the process associated with their use was perceived as confusing and stigmatizing. Service users had limited understanding of and felt unsupported in attempts to use alternatives approaches. Additionally, the decision-making and information-giving processes were unclear to them, which raises issues of power and control in acute mental health settings. CONCLUSIONS: Nurses should take account of the issues of power and control when administering 'as needed' medication. The provision of adequate treatment information should be a priority to enable informed choices to be made about this form of medication.

Adult↗
PubMed1994

When a vulnerable patient absconds.

This case-study examines the nurse's role when a patient at risk absconds. It highlights possible weaknesses in the system for dealing with absconding patients who are so cognitively and emotionally impaired, that they may present a danger to themselves. The issues of patient identification and stigmatization are raised along with the possible conflict this may cause in psychiatric nurses. Recommendations for care at ward level are made, including asking the vulnerable patient to wear an identity bracelet and the instigation of a prepared action plan which involves engaging the help of outside agencies should a patient abscond.

Aged↗
PubMed1994

Methodological difficulties encountered in determining the service needs of a 'hidden population'.

This report describes some of the methodological difficulties encountered in carrying out a 4-year project designed to locate and determine the service needs of adults in Hong Kong with an intellectual disability over the age of 45 years. The project located 263 adults with an intellectual disability across a wide spectrum of Hong Kong society. The methodological difficulties encountered in attempting to locate these individuals and conducting the survey to determine the service needs of this 'hidden population' included: an interviewing process that was extremely tedious and which took much longer than originally anticipated; problems encountered in trying to convince potential subjects to be interviewed; contending with different dialects and speech comprehension; conceptions of options and choices that were often very limited because of the highly restrictive lifestyle of the individual surveyed; and discrepancies between the views of carers and adults with intellectual handicaps. Data analyses were also hampered by problems in constructing a reliable registry, computerization because of translations of names and responses, and respondent refusals as a result of concerns over stigmatization. The authors offer a discussion of these problems as learning aids for future research.

Aged↗
PubMed2006

Young people with intellectual disabilities attending mainstream and segregated schooling: perceived stigma, social comparison and future aspirations.

BACKGROUND: Mainstream schooling is a key policy in the promotion of social inclusion of young people with learning disabilities. Yet there is limited evidence about the school experience of young people about to leave mainstream as compared with segregated education, and how it impacts on their relative view of self and future aspirations. METHODS: Sixty young people with mild to moderate intellectual disabilities in their final year of secondary school participated in this study. Twenty-eight individuals came from mainstream schools and 32 attended segregated school. They completed a series of self-report measures on perceptions of stigma, social comparison to a more disabled and non-disabled peer and the likelihood involved in attaining their future goals. RESULTS: The majority of participants from both groups reported experiencing stigmatized treatment in the local area where they lived. The mainstream group reported significant additional stigma at school. In terms of social comparisons, both groups compared themselves positively with a more disabled peer and with a non-disabled peer. While the mainstream pupils had more ambitious work-related aspirations, both groups felt it equally likely that they would attain their future goals. Although the participants from segregated schools came from significantly more deprived areas and had lower scores on tests of cognitive functioning, neither of these factors appeared to have an impact on their experience of stigma, social comparisons or future aspirations. CONCLUSIONS: Irrespective of schooling environment, the young people appeared to be able to cope with the threats to their identities and retained a sense of optimism about their future. Nevertheless, negative treatment reported by the children was a serious source of concern and there is a need for schools to promote the emotional well-being of pupils with intellectual disabilities.

Adaptation, Psychological↗
PubMed1996

User involvement in mental health nursing practice: rhetoric or reality?

Following the review of mental health nursing, nurses need to address the dilemma for providing empowering care in a climate of increasing control and stigma. This paper discusses the background to, and significance for nursing, of the 'user movement' in the UK. A current 'explosion' of user groups does not imply that these form a homogeneous group, nor that they share similar perspectives. Consultation and involvement mean little if unmatched with action. This may be constrained by the 'market' in which the 'true power' is held by the budget holder, and by stigmatizing policy imperatives claimed to be in the public interest. Self-advocacy may be legitimized by the desire to prevent providers 'speaking out'. These difficulties may, however, provide convenient excuses for inaction. A new professional identity may be found in forging political alliances with users, in which a reappraisal of traditional boundaries may go some way towards reducing the stigma surrounding mental health problems.

Humans↗
PubMed2004

Struggling for hopefulness: a qualitative study of Swedish women who self-harm.

There has been an increase in the number of Swedish psychiatric patients who self-harm, yet self-harm is seldom described in published research. The aim of this study was to describe how people who self-harm experience received care and their desired care. Nine participants, all Swedish women who had been treated for inpatient or outpatient psychiatric care, narrated their experiences of care for self-harm. Using qualitative content analysis, two themes were formulated: 'Expecting to be confirmed while being confirmed fosters hopefulness'; and, 'Expecting to be confirmed while not being confirmed stifles hopefulness'. Each of these themes emerged from five subthemes that clustered around positive and negative aspects of being seen-not being seen, being valued-being stigmatized, being connected-disconnected, being believed-doubted, and being understood-not being understood. Of significance is for nurses to view persons who self-harm as human beings and to grasp the importance of being confirmed by staff that can foster hopefulness in persons who self-harm, yet realize the possibility of the paradoxical nature of hopefulness and being confirmed.

Adult↗
PubMed2005

Antipsychotic depot medication and attitudes of community psychiatric nurses.

Utilization of long-acting antipsychotic injections (depots) shows wide regional variation. In many countries, community psychiatric nurses (CPNs) administer depots but their concerns and attitudes regarding these drugs are seldom considered. We aimed to investigate attitudes and knowledge towards depots in a cross-sectional survey of CPNs in London, and compare them with those of psychiatrists obtained in a previous study. Three subscales of a depot attitude/knowledge questionnaire were used with additional items which referred to aspects of the CPN role. Participants were 70 CPNs who attended an academic meeting. Most CPNs reported that they were involved in treatment decisions (78%) although some CPNs seldom asked their patients about side effects (19%) and felt that they did not have sufficient time for consultations (23%) or training (23%). Several CPNs believed that depots are old fashioned (34%) and stigmatizing (44%). Compared to psychiatrists, CPNs believed more that depots compromised patient autonomy (28%, P = 0.003) and were coercive (42%, P < 0.001). Familiarity with depots and their knowledge of side effects were positively associated with favourable attitudes. CPNs have several strongly endorsed attitudes towards depot medication. Interprofessional group differences also exist which may undermine the treatment process. Training/refresher courses about depots should highlight systematic treatment decision-making and side effect monitoring which, in turn, may improve professionals' attitudes, knowledge and clinical monitoring of depots.

Antipsychotic Agents↗
PubMed2005

Adverse factors and the mental health of older people: implications for social policy and professional practice.

Defining 'older people' as a homogenous group is problematic; it can lead to stereotypical and stigmatizing perceptions of what old age is, attracting consequent negative attitudes to later life. Nevertheless, evidence suggests that some in the older age bracket are subject to particular stressors and physical changes that can adversely affect their mental health. This paper will consider challenges to mental health in older age groups and particularly the phenomenon of dementia. The role and influence of diagnosis, social policy and professional practice will also be addressed and suggestions will be made as to how people could improve their responses to either the predisposition to or the actual occurrence of mental distress in later life. In addition, it is argued that person-centredness is important as the caring/cultural medium through which provisions and policies are mediated: that obtaining appropriate balances between corporate and individual contributions and interventions must constitute the context wherein future developments lie.

Adaptation, Psychological↗
PubMed1978

Medical and social work student perceptions of deviant conditions: descriptive label, cause and help source.

The focus of this paper is on medical and social work student perceptions of the descriptive label, cause and treatment source for seven conditions; mental illness, mental subnormality, alcoholism, drug addiction, homosexuality, unmarried pregnancy and venereal disease. Responses to questionnaire items were examined to ascertain whether there were differentials by career choice (medicine and social work) and by class year (first and final year). The students indicated that the seven deviancies should be described as sick or handicapping conditions, that causes are social and psychological, and that treatment should be given by private and social sources. When reference to medical aspects of the conditions is made, the students select psychiatric rather than general medical options. Both medical and social work students tended to choose neutral, rather than negative and stigmatizing terms of reference for the conditions. While students in the different school years made similar response overall, multiple responses were much more frequent among those preparing for social work rather than medical careers and among students in their final year of schooling.

Attitude of Health Personnel↗
PubMed2006

AtEXO70A1, a member of a family of putative exocyst subunits specifically expanded in land plants, is important for polar growth and plant development.

The exocyst is a hetero-oligomeric protein complex involved in exocytosis and has been extensively studied in yeast and animal cells. Evidence is now accumulating that the exocyst is also present in plants. Bioinformatic analysis of genes encoding plant homologs of the exocyst subunit, Exo70, revealed that three Exo70 subgroups are evolutionarily conserved among angiosperms, lycophytes and mosses. Arabidopsis and rice contain 22 and approximately 39 EXO70 genes, respectively, which can be classified into nine clusters considered to be ancient in angiosperms (one has been lost in Arabidopsis). We characterized two independent T-DNA insertional mutants of the AtEXO70A1 gene (exo70A1-1 and exo70A1-2). Heterozygous EXO70A1/exo70A1 plants appear to be normal and segregate in a 1:2:1 ratio, suggesting that neither male nor female gametophytes are affected by the EXO70A1 disruption. However, both exo70A1-1 and exo70A1-2 homozygotes exhibit an array of phenotypic defects. The polar growth of root hairs and stigmatic papillae is disturbed. Organs are generally smaller, plants show a loss of apical dominance and indeterminate growth where instead of floral meristems new lateral inflorescences are initiated in a reiterative manner. Both exo70A1 mutants have dramatically reduced fertility. These results suggest that the putative exocyst subunit EXO70A1 is involved in cell and organ morphogenesis.

Arabidopsis↗
PubMed1984

Ethical and social aspects of risk predictions.

This paper reviews past, present and future social and ethical considerations of screening carriers of autosomal disorders and other heterozygotes. A body of ethical and social guidance has evolved in the 1970's and 1980's for screening. The values of voluntaristic participation and informed consent are high. The goal of programs should be to provide couples, families, and individuals with knowledge respecting their reproductive choices. The dangers are coercive strategies, stigmatization, and careless communication of risk information. It is assumed that the number of autosomal carrier states that are screenable will undoubtedly increase as will states of heterozygosity that cause susceptibility to common diseases. Before the end of the century, something approaching a "biopsy of the human genome" will be a practical reality. To balance the potential for harmful psychological and social effects of so much new genetic knowledge, new efforts must be made to find treatments for progeny affected by recessive disorders. Maternal and paternal screening, prenatal diagnosis and treatment will be increasingly linked in the future. This paper will report on a case of fetal therapy for congenital adrenal hyperplasia as a paradigm for the future. The argument will be made that society ought to put a higher priority on prenatal care and prevention of disorders of prematurity than genetic disorders with a low frequency, lest genetic screening be distorted by unfounded concern about eugenics.

Adrenal Hyperplasia, Congenital↗