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1.
PLoS One ; 16(3): e0249114, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33780498

RESUMO

Lung cancer (LC) generally lacks unique core symptoms or signs. However, there are a multitude of bodily sensations that are often non-specific, not easily understood, and many times initially not recognized as indicative of LC by the affected person, which often leads to late diagnosis. In this international qualitative study, we inductively analyzed retrospective accounts of 61 people diagnosed with LC in Denmark, England and Sweden. Using the bodily sensations they most commonly spoke about (tiredness, breathlessness, pain, and cough), we constructed four sensation-based cases to understand the pre-diagnostic processes of reasoning and practice triggered by these key indicators of LC. We thereafter critically applied Hay's model of sensations to symptoms transformation, examining its central concepts of duration, disability and vulnerability, to support understanding of these processes. We found that while duration and disability are clearly relevant, vulnerability is more implicitly expressed in relation to perceived threat. Tiredness, even when of long duration and causing disability, was often related to normal aging, rather than a health threat. Regardless of duration, breathlessness was disturbing and threatening enough to lead to care-seeking. Pain varied by location, duration and degree of disability, and thus also varied in degree of threat perceived. Preconceived, but unmet expectations of what LC-related cough and pain would entail could cause delays by misleading participants; if cough lasted long enough, it could trigger health care contact. Duration, disability, and sense of threat, rather than vulnerability, were found to be relevant concepts for understanding the trajectory to diagnosis for LC among these participants. The process by which an individual, their family and health care providers legitimize sensations, allowing them to be seen as potential symptoms of disease, is also an essential, but varying part of the diagnostic processes described here.

2.
J Adv Nurs ; 77(5): 2472-2480, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-33599309

RESUMO

AIM: To further develop Earnshaw and Chaudoir's HIV stigma framework by describing the experiences of HIV-related stigma among people living with viral suppression in a context where HIV is well controlled and to investigate how these experiences correspond to the stigma mechanisms of the framework. DESIGN: Qualitative study using interviews and a framework approach to analysis. METHODS: People living with virally suppressed HIV in Sweden were recruited through an outpatient clinic and interviewed about their experiences of social aspects of living with HIV. The interviews were audio recorded, transcribed and analysed using a framework approach. RESULTS: Fifteen participants (eight women and seven men, aged 30-64 years) were interviewed from March to September 2017. They described stigma around HIV as a barrier in many situations. Anticipated and enacted stigma were found to be more complex than is described in the existing literature. Being labelled as a person with HIV was found to be an important and persistent part of the stigma experience. Disclosure was found to be context-related and a result of a process of negotiating and weighing the relevance of disclosing HIV, perceiving HIV as a private matter and feeling a responsibility to disclose one's HIV status to others. An important reason for nondisclosure was to avoid being labelled with HIV, which would then become their most defining feature. CONCLUSIONS: The HIV stigma framework could benefit from revision for people living with virally suppressed HIV. IMPLICATIONS: The present findings, which indicate the role of health professionals in relation to disclosure and labelling, may guide nurses and other healthcare personnel in providing counselling and support for people who live with virally suppressed HIV and experience stigma.

3.
PLoS One ; 15(12): e0242710, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33362248

RESUMO

INTRODUCTION: The use of patient-reported outcomes (PROs) to systematically quantify adverse events (AE) will assist in the improvement of medical care and the QoL of patients living with HIV (PLWH). The aim of this study was to investigate the associations between self-reported side effects and other PROs, demographics and laboratory data, and further evaluate the Health Questionnaire (HQ) as a tool for following trends in patient-reported side effects over time in relation to trends in prescribed third agent in ART. MATERIALS AND METHODS: The Swedish National Registry InfCareHiv includes an annual self-reported nine-item HQwhich is used in patient-centered HIV care in all Swedish HIV units. In this study, the experience of side effects was addressed. We analyzed 9,476 HQs completed by 4,186 PLWH together with details about their prescribed ART and relevant biomarkers collected during 2011-2017. Data were analyzed using descriptive statistics, Pearson's correlation coefficient and mixed logistic regression. RESULTS: The cross-sectional analysis of the HQs showed that the frequency of reported side effects decreased from 32% (2011) to 15% (2017). During the same period, there was a shift in ART prescription from efavirenz (EFV) to dolutegravir (DTG) (positive correlation coefficient r = 0.94, p = 0.0016). Further, PLWH who reported being satisfied with their physical health (OR: 0.47, p = <0.001) or psychological health (OR: 0.70, p = 0.001) were less likely to report side effects than those less satisfied. CONCLUSIONS: Self-reported side effects were found to have a close relationship with the patient's ratings of their overall health situation and demonstrated a strong correlation with the sharp decline in use of EFV and rise in use of DTG, with reported side effects being halved. This study supports the feasibility of using the HQ as a tool for longitudinal follow up of trends in PROs.


Assuntos
Alquinos/efeitos adversos , Fármacos Anti-HIV/efeitos adversos , Terapia Antirretroviral de Alta Atividade/efeitos adversos , Benzoxazinas/efeitos adversos , Ciclopropanos/efeitos adversos , Infecções por HIV/tratamento farmacológico , Compostos Heterocíclicos com 3 Anéis/efeitos adversos , Oxazinas/efeitos adversos , Piperazinas/efeitos adversos , Piridonas/efeitos adversos , Qualidade de Vida/psicologia , Sistema de Registros , Adulto , Alquinos/administração & dosagem , Fármacos Anti-HIV/administração & dosagem , Artralgia/induzido quimicamente , Artralgia/diagnóstico , Artralgia/fisiopatologia , Benzoxazinas/administração & dosagem , Estudos Transversais , Ciclopropanos/administração & dosagem , Disfunção Erétil/induzido quimicamente , Disfunção Erétil/diagnóstico , Disfunção Erétil/fisiopatologia , Feminino , HIV/efeitos dos fármacos , Infecções por HIV/fisiopatologia , Infecções por HIV/psicologia , Infecções por HIV/virologia , Compostos Heterocíclicos com 3 Anéis/administração & dosagem , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Náusea/induzido quimicamente , Náusea/diagnóstico , Náusea/fisiopatologia , Oxazinas/administração & dosagem , Medidas de Resultados Relatados pelo Paciente , Piperazinas/administração & dosagem , Piridonas/administração & dosagem , Suécia
4.
Health Qual Life Outcomes ; 18(1): 273, 2020 Aug 06.
Artigo em Inglês | MEDLINE | ID: mdl-32762775

RESUMO

BACKGROUND: Reproductive concerns are common among young cancer survivors and include worries related to different aspects of fertility and parenthood. The Reproductive Concerns After Cancer (RCAC) scale is an 18-item scale with six dimensions, developed to capture a variety of such concerns. The aim of the present study was to describe the cultural adaptation of the RCAC scale into Swedish and evaluate its psychometric properties among young women who have undergone treatment for cancer. METHODS: The RCAC was forward translated from English into Swedish and assessed for cultural adaptation based on a two-panel approach followed by cognitive interviews with the target group. For the psychometric evaluation, a Swedish cohort of 181 female young adult breast cancer survivors completed a survey including the RCAC scale approximately 1.5 years post-diagnosis. Psychometric properties were examined by analyses of construct validity (confirmatory factor analysis and convergent validity), data quality (score distribution, floor and ceiling effects), reliability and known-groups validity. RESULTS: The confirmatory factor analysis yielded an acceptable fit (RMSEA 0.08, SRMR 0.09, CFI 0.92). Convergent validity was demonstrated by a negative correlation of moderate size (- 0.36) between the RCAC total score and the emotional function scale of the EORTC QLQ-C30. Reliability measured with Revelle Ω total was satisfactory (0.73-0.92) for five of the dimensions, and poor for the dimension Becoming pregnant (Revelle Ω total = 0.60); Cronbach's alpha showed a similar pattern. Known-groups validity was indicated by significant RCAC mean score differences (MD), reflecting more concerns among women with a certain (MD 4.56 [95% CI 3.13 to 5.99]) or uncertain (MD 3.41 [95% CI 1.68 to 5.14]) child wish compared to those with no wish for (additional) children. CONCLUSION: The translation and cultural adaptation of the Swedish RCAC has resulted in a scale demonstrating construct and known-groups validity, and satisfactory reliability for five of six dimensions. The dimension Becoming pregnant showed non-optimal internal consistency and should undergo further evaluation. The Swedish RCAC is recommended to be used in research settings for measurement of concerns related to fertility and parenthood in young women with cancer.


Assuntos
Sobreviventes de Câncer/psicologia , Infertilidade Feminina/psicologia , Inquéritos e Questionários/normas , Neoplasias da Mama/psicologia , Criança , Comparação Transcultural , Análise Fatorial , Feminino , Humanos , Pessoa de Meia-Idade , Qualidade de Vida , Reprodutibilidade dos Testes , Suécia , Traduções , Adulto Jovem
5.
PLoS One ; 15(7): e0236180, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32697801

RESUMO

INTRODUCTION: Sexual and reproductive health are significant aspects of quality of life. Healthcare often fails to provide adequate support for young cancer survivors in this area, hence the need to develop more effective interventions. The present study aimed to describe experiences of participating in a web-based psycho-educational intervention focusing on sexual dysfunction and fertility distress after cancer, and to explore these experiences within the theoretical frame of the basic psychological needs for competence, relatedness and autonomy according to self-determination theory. METHODS: Individual semi-structured interviews with 24 women and 4 men, age 19-40, were abductively analyzed using the Framework approach for qualitative content analysis. RESULTS: Participant experiences corresponded well with the three main deductive themes competence, relatedness and autonomy, divided into a total of nine subthemes illustrating varying degrees of basic need satisfaction with considerable nuance but not without ambiguity. While satisfaction of the need for competence could be linked to the amount of information in relation to participants' cognitive capacity, satisfaction of the need for relatedness seemed to be of special importance for these young adults with cancer experience. Invitation to the program meant a chance at alleviating loneliness and normalizing problems, symptoms and concerns. Participants' descriptions of perceived autonomy support were more challenging and ambiguous, because of the many contradictions in participants' responses to their variable situations. CONCLUSION: Basic psychological needs were confirmed as flexible positions along a continuum rather than discrete and mutually exclusive qualities. Understanding the variety of basic need satisfaction may enhance the design of future web-based interventions to be even more inclusive, tailorable and autonomy-supportive. Further research is warranted to determine the role of basic need satisfaction as a possible mediator for web-based psychoeducational interventions in cancer survivorship care.


Assuntos
Sobreviventes de Câncer/psicologia , Fertilidade , Neoplasias/complicações , Educação de Pacientes como Assunto/métodos , Angústia Psicológica , Disfunções Sexuais Fisiológicas/reabilitação , Adulto , Feminino , Humanos , Intervenção Baseada em Internet , Masculino , Neoplasias/psicologia , Autonomia Pessoal , Satisfação Pessoal , Pesquisa Qualitativa , Qualidade de Vida , Disfunções Sexuais Fisiológicas/etiologia , Disfunções Sexuais Fisiológicas/psicologia , Adulto Jovem
6.
Lancet HIV ; 7(2): e129-e140, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31776098

RESUMO

As the UNAIDS 90-90-90 targets for people living with HIV are increasingly being reached in many contexts, health-related quality of life, the so-called fourth 90, warrants special attention. HIV-related stigma and discrimination are major barriers for overall health-related quality of life despite impressive clinical and virological improvements in HIV care. There is a scarcity of well designed intervention studies that document stigma reduction in people living with HIV and few studies that specifically assess the effect of stigma on health-related quality of life. Further, few interventions target discrimination from providers outside of HIV-specific care or involve people living with HIV in both the design and implementation. Lastly, evidence on methods to reduce stigma in several underepresented key populations and geographical regions is insufficient and research on intersectional stigma (ie, the convergence of multiple stigmatised identities) needs further attention.


Assuntos
Infecções por HIV/psicologia , Qualidade de Vida , Estigma Social , Infecções por HIV/epidemiologia , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Discriminação Social/prevenção & controle , Identificação Social , Estereotipagem
7.
Sci Rep ; 9(1): 16504, 2019 11 11.
Artigo em Inglês | MEDLINE | ID: mdl-31712735

RESUMO

The aim of this study was to identify a combination of early predictive symptoms/sensations attributable to primary lung cancer (LC). An interactive e-questionnaire comprised of pre-diagnostic descriptors of first symptoms/sensations was administered to patients referred for suspected LC. Respondents were included in the present analysis only if they later received a primary LC diagnosis or had no cancer; and inclusion of each descriptor required ≥4 observations. Fully-completed data from 506/670 individuals later diagnosed with primary LC (n = 311) or no cancer (n = 195) were modelled with orthogonal projections to latent structures (OPLS). After analysing 145/285 descriptors, meeting inclusion criteria, through randomised seven-fold cross-validation (six-fold training set: n = 433; test set: n = 73), 63 provided best LC prediction. The most-significant LC-positive descriptors included a cough that varied over the day, back pain/aches/discomfort, early satiety, appetite loss, and having less strength. Upon combining the descriptors with the background variables current smoking, a cold/flu or pneumonia within the past two years, female sex, older age, a history of COPD (positive LC-association); antibiotics within the past two years, and a history of pneumonia (negative LC-association); the resulting 70-variable model had accurate cross-validated test set performance: area under the ROC curve = 0.767 (descriptors only: 0.736/background predictors only: 0.652), sensitivity = 84.8% (73.9/76.1%, respectively), specificity = 55.6% (66.7/51.9%, respectively). In conclusion, accurate prediction of LC was found through 63 early symptoms/sensations and seven background factors. Further research and precision in this model may lead to a tool for referral and LC diagnostic decision-making.


Assuntos
Neoplasias Pulmonares/diagnóstico , Aprendizado de Máquina , Sensação , Avaliação de Sintomas , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Modelos Teóricos , Prognóstico , Curva ROC , Reprodutibilidade dos Testes
8.
AIDS Care ; 31(4): 403-412, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30444140

RESUMO

Sweden has one of the best HIV treatment outcomes in the world and an estimated 95% of all diagnosed people living with HIV are virally suppressed, but the quality of life (QoL) is understudied. The aim of this study was to examine the associations between variables within sociodemographic, behavioural, clinical, psychological, sexual life, social support and personal resource component and the QoL of people living with HIV in Sweden. Data were derived from a cross-sectional, nation-wide survey completed by 15% (n = 1096) of all people living with HIV and collected at 15 infectious disease clinics and 2 needle exchange sites during 2014. Ordinal univariate and multivariate logistic regression analyses were used to examine associations between potential contributors and QoL. Respondents reported high QoL: 63% rated their QoL 7 or higher on a scale ranging from 0 to 10. QoL was independent of gender, age, mode of HIV transmission and country of origin. Lower QoL was associated with recent homelessness, hazardous alcohol consumption, comorbidities, treatment side-effects, HIV-related physical symptoms, hopelessness, negative self-image, sexual dissatisfaction, and negative changes in sex life after HIV. The QoL of people living with HIV in Sweden was high overall, but still significantly influenced by HIV.


Assuntos
Antirretrovirais/uso terapêutico , Infecções por HIV/tratamento farmacológico , Infecções por HIV/psicologia , Qualidade de Vida/psicologia , Comportamento Sexual , Estigma Social , Adulto , Idoso , Estudos Transversais , Feminino , Infecções por HIV/epidemiologia , Infecções por HIV/virologia , Humanos , Masculino , Saúde Mental , Pessoa de Meia-Idade , Autoimagem , Comportamento Sexual/psicologia , Comportamento Sexual/estatística & dados numéricos , Apoio Social , Fatores Socioeconômicos , Inquéritos e Questionários , Suécia/epidemiologia
9.
Eur J Oncol Nurs ; 34: 82-88, 2018 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-29784144

RESUMO

PURPOSE: The emphasis on early diagnosis to improve cancer survival has been a key factor in the development of cancer pathways across Europe. The aim of this analysis was to explore how the emphasis on early diagnosis and timely treatment is reflected in patient's accounts of care, from the first suspicion of colorectal or lung cancer to their treatment in Denmark, England and Sweden. METHOD: We recruited 155 patients in Denmark, England and Sweden who were within six months of being diagnosed with lung or colorectal cancer. Data were collected via semi-structured narrative interviews and analysed using a thematic approach. RESULTS: Participants' accounts of quality of care were closely related to how quickly (or not) diagnosis, treatment and/or healthcare processes went. Kinetic metaphors as a description of care (such as treadmill) could be interpreted positively as participants were willing to forgo some degree of control and accept disruption to their lives to ensure more timely care. Drawing on wider cultural expectations of the benefits of diagnosing and treating cancer quickly, some participants were concerned that the waiting times between interventions might allow time for the cancer to grow. CONCLUSIONS: Initiatives emphasising the timeliness of diagnosis and treatment are reflected in the ways some patients experience their care. However, these accounts were open to further contextualisation about what speed of healthcare processes meant for evaluating the quality of their care. Healthcare professionals could therefore be an important patient resource in providing reassurance and support about the timeliness of diagnosis or treatment.


Assuntos
Neoplasias Colorretais/diagnóstico , Neoplasias Colorretais/terapia , Diagnóstico Precoce , Neoplasias Pulmonares/diagnóstico , Neoplasias Pulmonares/terapia , Satisfação do Paciente/estatística & dados numéricos , Qualidade da Assistência à Saúde/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias Colorretais/psicologia , Dinamarca , Inglaterra , Europa (Continente) , Feminino , Humanos , Neoplasias Pulmonares/psicologia , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Suécia , Fatores de Tempo
10.
J Allergy Clin Immunol ; 142(6): 1922-1931.e2, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-29678747

RESUMO

BACKGROUND: A subgroup of patients with common variable immunodeficiencies (CVIDs) responds to vaccination. The aim of this study was to try to identify predictive markers for those with a humoral immune response after influenza vaccination. METHODS: Forty-eight patients with CVID (29 female and 19 male patients; mean age, 57.7 years) were vaccinated with the A(H1N1) influenza vaccine Pandemrix (GlaxoSmithKline, Wavre, Belgium) and boosted after 1 month. Blood samples were collected before each vaccination and 2 months later. Patients with a 4-fold titer increase in results on the hemagglutinin inhibition test (≥1:40) were considered responders and compared with nonresponders for clinical, immunologic, and genetic markers. RESULTS: Eight (16.7%) patients responded to the vaccination. A significantly higher proportion of the responders, who showed a EUROclass SmB-Trnorm21norm profile (P = .03) with a post-germinal center B-cell pattern (P = .04) in blood, experienced enteropathies (P = .04) compared with nonresponders. On the other hand, bronchiectasis was found exclusively among nonresponders (n = 7), as was autoimmune cytopenia (n = 5). Nonresponders with a EUROclass SmB-Trnorm21low profile (P = .02) had a significantly greater prevalence of progressive antibody deficiency (P = .048) and, at diagnosis, a higher mean serum IgM level (P = .03), lower mean serum IgG1 level (P = .007), expansion of absolute counts of cytotoxic CD8+ T cells (P = .033), and increased proportion of memory CD8+ T cells (P = .044) in blood. CVID-associated HLA markers were not detected in responders (P = .03). CONCLUSION: About one fifth of the patients with CVIDs achieved protective antibody levels after A(H1N1) vaccination and selected clinical, and immunologic markers were identified that might predict a positive outcome of influenza vaccination. Patients with CVID should be offered vaccination also against seasonal influenza because of the potential severity of the infection and risk for bacterial complications.


Assuntos
Imunodeficiência de Variável Comum/terapia , Vacinas contra Influenza/uso terapêutico , Influenza Humana/prevenção & controle , Adulto , Idoso , Anticorpos Antivirais/sangue , Biomarcadores , Linfócitos T CD8-Positivos/imunologia , Imunodeficiência de Variável Comum/sangue , Imunodeficiência de Variável Comum/imunologia , Citocinas/imunologia , Feminino , Hemaglutininas/imunologia , Humanos , Imunidade Humoral , Imunoglobulina G/sangue , Imunoglobulina M/sangue , Vírus da Influenza A Subtipo H1N1 , Leucócitos Mononucleares/imunologia , Masculino , Pessoa de Meia-Idade
11.
Qual Life Res ; 27(6): 1647-1659, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29574526

RESUMO

PURPOSE: To examine whether items in Berger's HIV Stigma Scale function differently with persons of different age, gender, and cultural backgrounds. METHODS: Secondary data from cohorts, collected in South India (n = 250), Sweden (n = 193), and the US (n = 603) were reanalyzed to evaluate DIF within, between, and across these cohorts. All participants had answered the revised version of the HIV stigma scale consisting of 32 items forming the subscales Personalized stigma, Disclosure concerns, Concerns about public attitudes, and Negative self-image. Differential Item Functioning (DIF) for these items was assessed using hybrid ordinal regression-IRT technique. When DIF was detected, the cumulative impact of DIF on individual subscale scores was evaluated. RESULTS: DIF was detected for 9 items within, between, or across cohorts, but the DIF was negligible in general. Detected DIF between the Swedish and Indian cohorts had a cumulative salient impact on individual scores for the subscale Disclosure Concerns; Disclosure concerns were overestimated in the Swedish cohort and both over- and underestimated in the Indian cohort. CONCLUSIONS: The items in the 32-item version of the HIV stigma scale did not seem to be particularly prone to present DIF. The DIF between the Indian and Swedish cohort for items in the subscale Disclosure Concerns could, however, result in both type I and type II errors if scores should be compared between the Indian and Swedish cohort.


Assuntos
HIV/patogenicidade , Psicometria/métodos , Qualidade de Vida/psicologia , Estigma Social , Feminino , Humanos , Índia , Masculino , Inquéritos e Questionários , Suécia , Estados Unidos
12.
Arch Sex Behav ; 47(7): 2007-2026, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-29441436

RESUMO

Earlier research reports lower sexual satisfaction among people living with HIV (PLHIV) compared to HIV-negative persons. A number of psychosocial factors directly associated with sexual dissatisfaction have been identified. Little is known about sexual satisfaction and their contributors among PLHIV in Sweden. The aim of this study was to examine direct and indirect effects of variables within sociodemographic, clinical HIV-related, psychological, and sexual domains on sexual (dis)satisfaction among PLHIV in Sweden. Data for this study were derived from a nationally representative, anonymous survey among PLHIV conducted in 2014 (n = 1096). Statistical analysis included four steps: descriptive analyses, identification of variables associated with sexual (dis)satisfaction, identification of variables associated with those contributors of sexual (dis)satisfaction, and a path model integrating all these analyses. A total of 49% of participants reported being sexually dissatisfied, and no significant differences were observed when non-heterosexual men, heterosexual men, and women were compared. Among women, a negative change in sex life after HIV diagnosis and distress with orgasmic difficulties was directly associated with sexual dissatisfaction. For men, hopelessness, high HIV stigma, sexual inactivity in the last 6 months, and a negative change in sex life after HIV diagnosis were directly associated with sexual dissatisfaction. Path analyses showed in both men and women significant indirect associations between not being involved in an intimate relationship, lower self-reported CD4 cell counts, and perceiving obligation to disclose HIV status to sexual partners as a barrier to look for a long-term partner and sexual dissatisfaction. Our results show that despite good treatment outcomes, the HIV diagnosis has a negative bearing on sexual satisfaction. The need for gender-tailored interventions and clinical implications of these findings are discussed.


Assuntos
Infecções por HIV/psicologia , Orgasmo , Comportamento Sexual/psicologia , Adulto , Revelação , Feminino , Heterossexualidade , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Parceiros Sexuais , Estigma Social , Suécia
13.
AIDS Behav ; 22(12): 3795-3806, 2018 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-29417350

RESUMO

The aim was to empirically test the tenets of Earnshaw and Chaudoir's HIV stigma framework and its potential covariates for persons living with HIV in Sweden. Partial least squares structural equation modelling was used on survey data from 173 persons living with HIV in Sweden. Experiencing stigma was reported to a higher extent by younger persons and by women who had migrated to Sweden. As expected, anticipated stigma was related to lower Physical functioning, and internalized stigma to lower Emotional wellbeing. In contrast to that hypothesized by the HIV stigma framework, enacted stigma was not related to Physical functioning and no relationships were found between HIV-related stigma and antiretroviral adherence. These results indicate that the HIV stigma framework may need to be revised for contexts where a very high proportion of persons living with HIV are diagnosed and under efficient treatment.


Assuntos
Terapia Antirretroviral de Alta Atividade/psicologia , Emoções , Infecções por HIV/tratamento farmacológico , Indicadores Básicos de Saúde , Qualidade de Vida/psicologia , Estigma Social , Adulto , Estudos Transversais , Feminino , Infecções por HIV/psicologia , Acesso aos Serviços de Saúde , Humanos , Masculino , Adesão à Medicação/psicologia , Pessoa de Meia-Idade , Inquéritos e Questionários , Suécia
14.
BMJ Open ; 7(11): e018210, 2017 Nov 19.
Artigo em Inglês | MEDLINE | ID: mdl-29151441

RESUMO

OBJECTIVES: To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms. DESIGN: Cross-country comparison of Denmark, England and Sweden with qualitative analysis of in-depth interview accounts of the prediagnostic process in lung or bowel cancer. PARTICIPANTS: 155 women and men, aged between 35 and 86 years old, diagnosed with lung or bowel cancer in 6 months before interview. SETTING: Participants recruited through primary and secondary care, social media and word of mouth. Interviews collected by social scientists or nurse researchers during 2015, mainly in participants' homes. RESULTS: Participants reported difficulties in interpreting diffuse bodily sensations and symptoms and deciding when to consult. There were examples of swift referrals by primary care professionals in all three countries. In all countries, participants described difficulty deciding if and when to consult, highlighting concerns about access to general practitioner appointments and overstretched primary care services, although this appears less prominent in the Swedish data. It was not unusual for there to be more than one consultation before referral and we noted two distinct patterns of repeated consultation: (1) situations where the participant left the primary care consultation with a plan of action about what should happen next; (2) participants were unclear about under which conditions to return to the doctors. This second pattern sometimes extended over many weeks during which patients described uncertainty, and sometimes frustration, about if and when they should return and whether there were any other feasible investigations. The latter pattern appeared more evident in the interviews in England and Denmark than Sweden. CONCLUSION: We suggest that if clear action plans, as part of safety netting, were routinely used in primary care consultations then uncertainty, false reassurance and the inefficiency and distress of multiple consultations could be reduced.


Assuntos
Emoções , Conhecimentos, Atitudes e Prática em Saúde , Neoplasias Intestinais/diagnóstico , Neoplasias Pulmonares/diagnóstico , Atenção Primária à Saúde , Encaminhamento e Consulta , Incerteza , Adulto , Idoso , Idoso de 80 Anos ou mais , Comparação Transcultural , Dinamarca , Inglaterra , Feminino , Clínicos Gerais , Acesso aos Serviços de Saúde , Humanos , Neoplasias Intestinais/complicações , Neoplasias Intestinais/psicologia , Neoplasias Pulmonares/complicações , Neoplasias Pulmonares/psicologia , Masculino , Pessoa de Meia-Idade , Narração , Pesquisa Qualitativa , Atenção Secundária à Saúde , Suécia
15.
Support Care Cancer ; 25(12): 3675-3682, 2017 12.
Artigo em Inglês | MEDLINE | ID: mdl-28721554

RESUMO

PURPOSE: The purpose of the study is to evaluate the feasibility of a self-help web-based intervention to alleviate sexual problems and fertility distress in adolescents and young adults with cancer. METHODS: Twenty-three persons with cancer (19 women and 4 men, age 18-43, 1-5 years post-diagnosis of lymphoma, breast, gynecologic, central nervous system, or testicular cancer) were recruited to test a 2-month web-based program targeting sexual problems or fertility distress. The programs were organized in modules with educational and behavior change content, including texts, illustrations, exercises, and video vignettes. The program also included a discussion forum and an "ask the expert" forum. In addition, the sexuality program offered two telephone consultations. Feasibility (regarding demand, acceptability, preliminary efficacy, and functionality) was evaluated with the website system data, telephone interviews, continuous online evaluations, and study-specific measures. RESULTS: Fifteen participants completed four modules or more. Most of the program features were used and well accepted by these "committed users." The web-based format enabled flexible use by participants with diverse needs. Preliminary efficacy was indicated by self-reported increased knowledge and skill in handling sexual problems and fertility distress. The website was easy to use and functioned well technically. CONCLUSIONS: The present study indicated that this web-based intervention was feasible for adolescents and young adults with cancer. The effectiveness of the intervention in decreasing sexual problems and fertility distress will be tested in a population-based randomized controlled trial for adolescents and young adults with cancer. TRIAL REGISTRATION: ISRCTN36621459.


Assuntos
Infertilidade/etiologia , Comportamento Sexual/psicologia , Adolescente , Adulto , Estudos de Viabilidade , Feminino , Humanos , Internet , Masculino , Grupos de Autoajuda , Adulto Jovem
16.
Health Qual Life Outcomes ; 15(1): 115, 2017 May 30.
Artigo em Inglês | MEDLINE | ID: mdl-28558805

RESUMO

BACKGROUND: Valid and reliable instruments for the measurement of enacted, anticipated and internalised stigma in people living with HIV are crucial for mapping trends in the prevalence of HIV-related stigma and tracking the effectiveness of stigma-reducing interventions. Although longer instruments exist, e.g., the commonly used 40-item HIV Stigma Scale by Berger et al., a shorter instrument would be preferable to facilitate the inclusion of HIV stigma in more and broader surveys. Therefore, the aim of this work was to develop a substantially shorter, but still valid, version of the HIV Stigma Scale. METHODS: Data from a psychometric evaluation of the Swedish 40-item HIV Stigma Scale were reanalysed to create a short version with 12 items (three from each of the four stigma subscales: personalised stigma, disclosure concerns, concerns with public attitudes and negative self-image). The short version of the HIV stigma scale was then psychometrically tested using data from a national survey investigating stigma and quality of life among people living with HIV in Sweden (n = 880, mean age 47.9 years, 26% female). RESULTS: The hypothesized factor structure of the proposed short version was replicated in exploratory factor analysis without cross loadings and confirmatory factor analysis supported construct validity with high standardised effects (>0.7) of items on the intended scales. The χ2 test was statistically significant (χ2 = 154.2, df = 48, p < 0.001), but alternate fit measures indicated acceptable fit (comparative fit index: 0.963, Tucker-Lewis index: 0.950 and root mean square error of approximation: 0.071). Corrected item-total correlation coefficients were >0.4 for all items, with a variation indicating that the broadness of the concept of stigma had been captured. All but two aspects of HIV-related stigma that the instrument is intended to cover were captured by the selected items in the short version. The aspects that did not lose any items were judged to have acceptable psychometric properties. The short version of the instrument showed higher floor and ceiling effects than the full-length scale, indicating a loss of sensitivity in the short version. Cronbach's α for the subscales were all >0.7. CONCLUSIONS: Although being less sensitive in measurement, the proposed 12-item short version of the HIV Stigma Scale has comparable psychometric properties to the full-length scale and may be used when a shorter instrument is needed.


Assuntos
Infecções por HIV/psicologia , Qualidade de Vida , Estigma Social , Inquéritos e Questionários/normas , Adulto , Idoso , Idoso de 80 Anos ou mais , Distribuição de Qui-Quadrado , Feminino , Humanos , Pessoa de Meia-Idade , Psicometria , Reprodutibilidade dos Testes , Suécia , Adulto Jovem
17.
Afr Health Sci ; 16(3): 744-749, 2016 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-27917207

RESUMO

BACKGROUND: Cancer is a global public health challenge and how patients in countries with poor healthcare infrastructure experience cancer treatment is largely unknown. PURPOSE: The objective of this study was to describe adult Ugandan cancer patients' experiences of undergoing chemotherapy treatment. METHODOLOGY: Using a qualitative descriptive design, seven in-patients with varying cancer diagnoses at the Uganda Cancer Institute were interviewed about their experiences of undergoing chemotherapy treatment; the interviews were transcribed and analysed thematically. RESULTS: The analysis resulted in nine subthemes, which were categorized under three main themes: 'experiences related to the body', with the subthemes dry and sensitive skin, changes in eating and bowel habits, fever and feelings of abnormal body sensation; 'thoughts and feelings', with four subthemes reflecting the psychosocial impact of chemotherapy; and 'actively dealing with discomfort', with three subthemes describing how patients dealt with side effects, such as by sticking to a diet. CONCLUSION: Receiving chemotherapy treatment is difficult, and the side effects negatively influenced patients' bodies and moods. Dealing actively with discomfort and accepting negative impacts in hope of a cure helped the participants manage the acute complications related to the treatment. We recommend the development of interventions to ease discomfort due to chemotherapy.


Assuntos
Neoplasias/tratamento farmacológico , Satisfação do Paciente , Adulto , Antineoplásicos , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Uganda
18.
J Clin Nurs ; 25(19-20): 2874-83, 2016 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-27478056

RESUMO

AIMS AND OBJECTIVES: The aim of the study was to illuminate the meanings of trigger situations experienced in everyday life when learning to live with diabetes. BACKGROUND: Adults become active learners when faced with situations they do not know how to manage, triggering a need to understand something in a different way than before. Knowing more about experiential learning for persons living with diabetes is important for understanding how learning can be supported by health care. DESIGN: A life-world approach with a phenomenological hermeneutical method, inspired by the philosophy of Paul Ricoeur. METHODS: This method was used for interpreting transcriptions of interviews and consists of three stages: naïve understanding, structural analysis and a comprehensive understanding. Participants (n = 13), with either type I or type II diabetes, were interviewed on three different occasions over a three-year period after being diagnosed with diabetes. RESULTS: When learning to live with diabetes, the meanings of trigger situations were described as 'the unpredictable body heightens insecurity with awareness of one's own dependability', 'losing control in unsustainable situations' and 'encumbered by vulnerability and temporality in earlier familiar situations'. CONCLUSION: The meanings of trigger situations were to lose the smooth, unreflected way of managing an everyday life situation, interlaced with feelings of lost control of how to live with new insights of being vulnerable. Trigger situations meant an opportunity for learning, as well as being demanding, unplanned and with limited freedom of choice. Trigger situations presented life and body as unpredictable. RELEVANCE TO CLINICAL PRACTICE: If healthcare professionals can identify the worries and questions raised in trigger situations, knowledge gaps can be identified and reflected on to stimulate learning.


Assuntos
Adaptação Psicológica , Diabetes Mellitus Tipo 2/psicologia , Educação de Pacientes como Assunto , Adulto , Idoso , Diabetes Mellitus Tipo 2/enfermagem , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Resolução de Problemas , Suécia
19.
PLoS One ; 11(6): e0156916, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27310201

RESUMO

BACKGROUND: In this cross-sectional study we present an integrated analysis of a self-reported Health Questionnaire and socio-demographic and treatment outcome data from the national Swedish HIV cohort, InfCareHIV. OBJECTIVES: To evaluate the Health Questionnaire and identify the main determinants of adherence. METHODS: A total of 2,846 patients answered a nine-item disease-specific Health Questionnaire between 2012 and 2014, corresponding to 44% of all active patients in the national InfCareHIV cohort. The questionnaire assessed patient related outcome measures (PROMs) regarding health and antiretroviral treatment (ART) and patient related experience measures (PREMs) regarding involvement in care and satisfaction with the care provider. RESULT: We found the Health Questionnaire to be valid and reliable when used in ordinary clinical practice. There was a high concordance between self-reported adherence to ART in the past seven days and treatment outcome, with 94% of patients who reported optimal adherence having a viral load <50 copies/ml. The main determinants of optimal adherence were heterosexual transmission path, being born in Sweden, being male, not reporting experience of ART side effects and being fully satisfied with care. CONCLUSION: The nine-item Health Questionnaire can identify patients at risk of treatment failure, those in need of clinical assessment of adverse events and those with impaired physical health.


Assuntos
Fármacos Anti-HIV/uso terapêutico , Infecções por HIV/tratamento farmacológico , Adesão à Medicação/estatística & dados numéricos , Satisfação Pessoal , Qualidade de Vida/psicologia , Carga Viral/efeitos dos fármacos , Adulto , Terapia Antirretroviral de Alta Atividade , Estudos Transversais , Feminino , Infecções por HIV/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Adesão à Medicação/psicologia , Pessoa de Meia-Idade , Autorrelato , Inquéritos e Questionários , Suécia , Resultado do Tratamento
20.
J Clin Nurs ; 25(23-24): 3605-3618, 2016 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-27135281

RESUMO

AIMS AND OBJECTIVES: To explore motivators and barriers to HIV testing and to assess the factors associated with testing among men who have sex with men. BACKGROUND: Previous research has considered fear, worries and structural barriers as hindrances to HIV testing among men who have sex with men. However, few studies have included assessments of actual HIV testing when exploring barriers or motivators for such testing. DESIGN: The design of the study was a stratified cross-sectional online survey (n = 2373). METHOD: Factor analysis was conducted to analyse the barriers and motivators for HIV testing. Logistic regression analysis was conducted to assess predictors for HIV testing. RESULTS: Many men who have sex with men test for HIV regularly, and specific reasons for testing were having unprotected sex or starting/ending a relationship. A lack of awareness and a perception of being at low risk for exposure were common reasons for never being tested. Fear and anxiety as well as barriers related to the use of test services remain important hindrances for testing. Predictors associated with having been tested within the past 12 months were: younger age (15-25 years old compared with 47+); knowledge on where to take an HIV test on short notice as well as having talked with a counsellor, having received condoms for free, or having had unprotected anal intercourse with casual partners within the last 12 months. CONCLUSION: Easily accessible test services offering testing and counselling on short notice should be available for all men who have sex with men. Outreach activities, distribution of free condoms and testing at venues where men who have sex with men meet are important prevention add-ons that can contribute to increased awareness about HIV and testing. RELEVANCE TO CLINICAL PRACTICE: Test services must ensure confidentiality and health care professionals who meet men who have sex with men for testing need competency with regards to men who have sex with men sexual health needs.


Assuntos
Infecções por HIV/diagnóstico , Acesso aos Serviços de Saúde , Homossexualidade Masculina/psicologia , Motivação , Adolescente , Adulto , Ansiedade , Preservativos/estatística & dados numéricos , Estudos Transversais , Infecções por HIV/prevenção & controle , Infecções por HIV/psicologia , Humanos , Masculino , Programas de Rastreamento/estatística & dados numéricos , Pessoa de Meia-Idade , Parceiros Sexuais , Suécia , Adulto Jovem
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