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1.
Lancet Diabetes Endocrinol ; 12(1): 61-82, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38128969

RESUMO

People with diabetes often encounter stigma (ie, negative social judgments, stereotypes, prejudice), which can adversely affect emotional, mental, and physical health; self-care, access to optimal health care; and social and professional opportunities. To accelerate an end to diabetes stigma and discrimination, an international multidisciplinary expert panel (n=51 members, from 18 countries) conducted rapid reviews and participated in a three-round Delphi survey process. We achieved consensus on 25 statements of evidence and 24 statements of recommendations. The consensus is that diabetes stigma is driven primarily by blame, perceptions of burden or sickness, invisibility, and fear or disgust. On average, four in five adults with diabetes experience diabetes stigma and one in five experience discrimination (ie, unfair and prejudicial treatment) due to diabetes, such as in health care, education, and employment. Diabetes stigma and discrimination are harmful, unacceptable, unethical, and counterproductive. Collective leadership is needed to proactively challenge, and bring an end to, diabetes stigma and discrimination. Consequently, we achieved unanimous consensus on a pledge to end diabetes stigma and discrimination.


Assuntos
Diabetes Mellitus , Estigma Social , Adulto , Humanos , Preconceito , Atenção à Saúde , Inquéritos e Questionários , Diabetes Mellitus/terapia
3.
BMJ Open ; 12(4): e050592, 2022 04 26.
Artigo em Inglês | MEDLINE | ID: mdl-35473739

RESUMO

OBJECTIVE: To identify critical illness survivors' perceived barriers and facilitators to resuming performance of meaningful activities when transitioning from hospital to home. DESIGN: Secondary content analysis of semistructured interviews about patients' experiences of intensive care (primary analysis disseminated on the patient-facing website www.healthtalk.org). Two coders characterised patient-perceived barriers and facilitators to resuming meaningful activities. To facilitate clinical application, we mapped the codes onto the Person-Task-Environment model of performance, a patient-centred rehabilitation model that characterises complex interactions among the person, task and environment when performing activities. SETTING: United Kingdom, 2005-2006. PARTICIPANTS: 39 adult critical illness survivors, sampled for variation among demographics and illness experiences. RESULTS: Person-related barriers included negative mood or affect, perceived setbacks; weakness or limited endurance; pain or discomfort; inadequate nutrition or hydration; poor concentration/confusion; disordered sleep/hallucinations/nightmares; mistrust of people or information; and altered appearance. Task-related barriers included miscommunication and managing conflicting priorities. Environment-related barriers included non-supportive health services and policies; challenging social attitudes; incompatible patient-family coping (emotional trauma and physical disability); equipment problems; overstimulation; understimulation; and environmental inaccessibility. Person-related facilitators included motivation or attitude; experiencing progress; and religion or spirituality. Task-related facilitators included communication. Environment-related facilitators included support from family, friends or healthcare providers; supportive health services and policies; equipment; community resources; medications; and accessible housing. Barriers decreased and facilitators increased over time. Six barrier-facilitator domains dominated based on frequency and emphasis across all performance goals: mood/motivation, setbacks/progress, fatiguability/strength; mis/communication; lack/community support; lack/health services and policies. CONCLUSIONS: Critical illness survivors described a comprehensive inventory of 18 barriers and 11 facilitators that align with the Person-Task-Environment model of performance. Six dominant barrier-facilitator domains seem strong targets for impactful interventions. These results verify previous knowledge and offer novel opportunities for optimising patient-centred care and reducing disability after critical illness.


Assuntos
Estado Terminal , Pessoas com Deficiência , Adulto , Comunicação , Humanos , Motivação , Sobreviventes
4.
BMC Med Res Methodol ; 20(1): 157, 2020 06 15.
Artigo em Inglês | MEDLINE | ID: mdl-32539718

RESUMO

BACKGROUND: The inclusion of 'seldom heard' groups in health and social care research is increasingly seen as important on scientific, policy and ethical grounds. British South Asians, the largest minority ethnic group in the United Kingdom (UK), are under-represented in health research yet over-represented in the incidence of certain conditions such as type 2 diabetes. With the growing requirement of patient involvement in research and the inclusion of diverse populations, methodological guidance on how to include, engage and conduct research with UK South Asian populations is essential if services and interventions are to be relevant and impactful. However, such guidance for researchers is limited. METHODS: The aim of the paper is to reflect on our experiences of conducting focus groups with UK South Asian communities with type 2 diabetes, which involved experienced community partners and researchers working closely together. We discuss the factors that aided the successful delivery of the project, the challenges that we encountered, how we dealt with these, and recommendations. RESULTS: Our study suggests ways to involve and conduct focus groups with UK South Asian populations. Key considerations are categorised under four headings: co-working with community partners; linguistic competency; cultural competency and awareness; and reflexivity, power and acknowledgement. Having an experienced team of researchers and community experts - with the relevant linguistic and cultural competencies and different kinds of knowledge and skills - was key to the successful delivery of the study. Working collaboratively enabled us to recruit a diverse sample, to navigate the challenges of recruitment, to be present at every discussion which helped contribute to data richness, and to reflect on our own roles in the research process. CONCLUSIONS: Focus groups with UK South Asian communities can be a useful way of exploring new topics and involving seldom heard views. While a useful method, focus groups are only one way of exploring a research topic and provide an insight into context-specific attitudes and views. Future research should explore British South Asian participants' views on how they would like to be involved in research, including new methods of collecting data and coproducing research.


Assuntos
Diabetes Mellitus Tipo 2 , Etnicidade , Povo Asiático , Diabetes Mellitus Tipo 2/terapia , Grupos Focais , Humanos , Reino Unido
5.
JMIR Mhealth Uhealth ; 8(4): e15789, 2020 04 20.
Artigo em Inglês | MEDLINE | ID: mdl-32310150

RESUMO

BACKGROUND: The prevalence of type 2 diabetes (T2D) is greater in South Asian populations and health outcomes are poorer compared with other ethnic groups. British South Asians are up to six times more likely to have T2D than the general population, to develop the condition at a younger age, and to experience diabetes-related complications. Interventions to support people in managing their condition can potentially reduce debilitating complications. Evidence to support the use of digital devices in T2D management, including mobile phones, has shown positive impacts on glycemic control. There is increasing recognition that health interventions that are culturally adapted to the needs of specific groups are more likely to be relevant and acceptable, but evidence to support the effectiveness of adapted interventions is limited and inconclusive. OBJECTIVE: This formative study aimed to explore the perceptions and views of British South Asian patients with T2D on mobile health SMS text messaging to support medication adherence, aimed at the general UK population. METHODS: Eight exploratory focus groups were conducted in Leicester, the United Kingdom, between September 2017 and March 2018. A diverse sample of 67 adults took part. RESULTS: British South Asian people with T2D who use digital devices, including mobile phones, felt that short messages to support medication adherence would be acceptable and relevant, but they also wanted messages that would support other aspects of self-management too. Participants were particularly interested in content that met their information needs, including information about South Asian foods, commonly used herbs and spices, natural and herbal approaches used in the United Kingdom and in South Asia, and religious fasting. Short messages delivered in English were perceived to be acceptable, often because family members could translate for those unable to read or understand the messages. Suggestions to support patients unable to understand short messages in English included having them available in different formats, and disseminated in face-to-face groups for those who did not use digital devices. CONCLUSIONS: Exploring the views of British South Asian patients about SMS text messaging aimed at the general UK population is important in maximizing the potential of such an intervention. For such a digital system to meet the needs of UK South Asian populations, it may also have to include culturally relevant messages sent to those who opt to receive them. It is equally important to consider how to disseminate message content to patients who do not use digital devices to help reduce health inequalities.


Assuntos
Diabetes Mellitus Tipo 2 , Telemedicina , Envio de Mensagens de Texto , Adulto , Povo Asiático , Diabetes Mellitus Tipo 2/tratamento farmacológico , Etnicidade , Humanos , Adesão à Medicação , Reino Unido
6.
Ann Am Thorac Soc ; 17(2): 221-228, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31726016

RESUMO

Rationale: Although survival during critical illness is improving, little evidence exists to guide post-intensive care unit (ICU) care. Understanding patients' needs and priorities is fundamental to improving care quality.Objectives: To describe the evolution of patients' priorities for recovery across the spectrum of post-ICU care.Methods: This was a secondary analysis of 39 semistructured interviews conducted from 2005 to 2006 in participants' homes 19 days to 11 years after hospital discharge after critical illness. Adult critical illness survivors (N = 39) aged 20 years or older from multiple ICUs across the United Kingdom were purposively selected to maximize diversity with respect to time since diagnosis, disease severity, sex, age, ethnicity, socioeconomic group/status, region. age, ICU admitting diagnoses, and length of stay. We used the method of qualitative description to characterize patients' priorities for recovery and their evolution within and between individual patients across three post-ICU periods: ICU transition to wards, early period (approximately the first 2 mo) after discharge to home, and late period (>2 mo) after discharge to home.Results: The analysis revealed 12 core patient priorities during recovery: feeling safe, being comfortable, engaging in mobility, participating in self-care, asserting personhood, connecting with people, ensuring family well-being, going home, restoring psychological health, restoring physical health, resuming previous roles and routines, and seeking new life experiences. In general, priorities evolved from those pertaining to basic survival during the stay on wards to being broader and more aspirational by the late postdischarge period.Conclusions: Understanding patients' priorities for post-ICU care is critical for developing stakeholder-driven clinical guidelines. Engaging other stakeholders (e.g., family members, healthcare providers, and institutionalized and frail older adults) to inform the development of clinical guidelines for post-ICU care, together with the barriers and facilitators faced in achieving patient- and family-centered care, is an important next step.


Assuntos
Tomada de Decisão Clínica , Barreiras de Comunicação , Cuidados Críticos/métodos , Alta do Paciente , Assistência Centrada no Paciente/métodos , Relações Profissional-Família , Adulto , Idoso , Feminino , Humanos , Unidades de Terapia Intensiva , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Resultado do Tratamento , Reino Unido , Adulto Jovem
7.
Br J Gen Pract ; 68(673): e541-e550, 2018 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-29970396

RESUMO

BACKGROUND: The burden of hypertension in primary care is high, and alternative models of care, such as pharmacist management, have shown promise. However, data describing outcomes from routine consultations between pharmacists and patients with hypertension are lacking. AIM: To identify factors associated with referral of patients from pharmacies to general practice within the first 2 weeks of starting a new antihypertensive medication. DESIGN AND SETTING: Multivariate logistic regression conducted on data from community pharmacies in England. METHOD: Data were obtained from the New Medicine Service between 2011 and 2012. Analyses were conducted on 131 419 patients. In all, 15 predictors were included in the model, grouped into three categories: patient-reported factors, demographic factors, and medication-related factors. RESULTS: Mean patient age was 65 years (±13 years), and 85% of patients were of white ethnicity. A total of 5895 (4.5%) patients were referred by a pharmacist to a GP within the first 2 weeks of starting a new antihypertensive medication. Patients reporting side effects (adjusted odds ratio [OR] 11.60, 95% confidence interval [CI] = 10.85 to 12.41) were most likely to be referred. Prescriptions for alpha-blockers were associated with referral (adjusted OR 1.28, 95% CI = 1.12 to 1.47), whereas patients receiving angiotensin-II receptor blockers were less likely to be referred (adjusted OR 0.89, 95% CI = 0.80 to 0.99). CONCLUSION: Most patients were followed up by pharmacists without the need for referral. Patient-reported side effects, medication-related concerns, and the medication class prescribed influenced referral. These data are reassuring, in that additional pharmacist involvement does not increase medical workload appreciably, and support further development of pharmacist-led hypertension interventions.


Assuntos
Anti-Hipertensivos/uso terapêutico , Serviços Comunitários de Farmácia , Medicina Geral , Hipertensão/tratamento farmacológico , Encaminhamento e Consulta/estatística & dados numéricos , Idoso , Serviços Comunitários de Farmácia/organização & administração , Estudos Transversais , Inglaterra/epidemiologia , Feminino , Humanos , Hipertensão/diagnóstico , Relações Interprofissionais , Modelos Logísticos , Masculino , Adesão à Medicação/estatística & dados numéricos , Pessoa de Meia-Idade , Razão de Chances , Avaliação de Resultados em Cuidados de Saúde , Papel Profissional
8.
Sociol Health Illn ; 40(7): 1186-1199, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29790195

RESUMO

The sense of freedom and independence that being able to drive generates may be taken for granted by many until it is threatened by illness. Drawing on the 'mobility turn' in social sciences that emphasises the social and emotional significance of the car (Sheller and Urry , ), this article presents secondary analysis of narratives of driving and its significance across four neurological conditions (epilepsy, Parkinson's disease, transient ischaemic attack and motor neurone disease). Taking an interactionist approach we explore how the withdrawal of a driving licence can represent not just a practical and emotional loss of independence, but also loss of enjoyment; of a sense and feeling of 'normal' adulthood and social participation; and of an identity (in some cases gendered) of strength and power. Conversely the ability to keep driving can maintain an unbroken thread of narrative, for example enabling people with speech difficulties to feel and look normal behind the wheel. Moments of pleasure and normality illuminate the importance of examining the micro-strands of disruption illness can cause.


Assuntos
Condução de Veículo , Doenças do Sistema Nervoso/psicologia , Condução de Veículo/psicologia , Epilepsia/psicologia , Feminino , Humanos , Ataque Isquêmico Transitório/psicologia , Masculino , Doença dos Neurônios Motores/psicologia , Doença de Parkinson/psicologia , Fatores Sexuais
9.
J Hypertens ; 35(10): 1919-1928, 2017 10.
Artigo em Inglês | MEDLINE | ID: mdl-28594707

RESUMO

BACKGROUND: Blood pressure (BP) readings are traditionally taken in a clinic setting, with treatment recommendations based on these measurements. The clinical interpretation of BP readings taken in community pharmacies is currently unclear. This study aimed to systematically review all literature comparing community pharmacy BP (CPBP) readings with ambulatory BP monitoring (ABPM), home BP monitoring and general practitioner clinic readings. METHOD: Studies were included if they compared CPBP with at least one other measurement modality used for the diagnosis or management of hypertension. Mean CPBP readings were compared with other measurement modalities and summarized using random-effects meta-analyses. The primary outcome was to compare CPBP with gold standard ABPM readings. RESULTS: Searches generated 3815 studies of which eight were included in the meta-analyses. The mean systolic CPBP-daytime ABPM difference was small [+1.6 mmHg (95% confidence interval -1.2 to 4.3) three studies, n = 319]. CPBP was significantly higher than 24-h ABPM [+7.8 mmHg (95% confidence interval 1.5-14.1) three studies n = 429]. Comparisons with general practitioner clinic readings (six studies, n = 2100) were inconclusive with significant heterogeneity between studies. CPBP and home BP monitoring readings (five studies, n = 1848) were nonsignificantly different. Diastolic comparisons mirrored systolic comparisons in all but the CPBP-daytime ABPM comparison, where CPBP was significantly higher. CONCLUSION: Current evidence around the clinical interpretation of CPBP is inconclusive. Although this review suggests that adopting the 135/85 mmHg threshold for hypertension might be reasonable and potentially result in a higher sensitivity for detecting patients with truly raised BP in pharmacies, the impact of this lower threshold on increased referrals to general practice clinics must be considered.


Assuntos
Determinação da Pressão Arterial/métodos , Determinação da Pressão Arterial/estatística & dados numéricos , Pressão Sanguínea/fisiologia , Medicina Geral , Humanos , Farmácias
10.
BMC Musculoskelet Disord ; 17: 249, 2016 06 06.
Artigo em Inglês | MEDLINE | ID: mdl-27267878

RESUMO

BACKGROUND: Although international guidelines encourage urate lowering therapy (ULT) for people who have more than two attacks of gout, only 30 % of patients are prescribed it and only 40 % of those adhere to the treatment. The aim was to explore reasons for this through an exploration of patient experience and understanding of ULT treatment for gout. METHODS: A qualitative study was conducted throughout the United Kingdom. Narrative and semi-structured video-recorded interviews and thematic analysis were used. RESULTS: Participants talked about their views and experiences of treatment, and the factors that affected their use of ULT. The analysis revealed five main themes: 1) knowledge and understanding of gout and its treatment; 2) resistance to taking medication; 3) uncertainty about when to start ULT; 4) experiences of using ULT; and 5) desire for information and monitoring. CONCLUSION: Patients' understanding and experiences of gout and ULT are complex and it is important for clinicians to be aware of these when working with patients. It is also important for clinicians to know that patients' perceptions and behaviour are not fixed, but can change over time, with changes to their condition, with dialogue and increased understanding. Patients want this interaction with their clinicians, through "a joint effort over a period of time".


Assuntos
Comportamento Cooperativo , Supressores da Gota/uso terapêutico , Gota/tratamento farmacológico , Conhecimentos, Atitudes e Prática em Saúde , Adesão à Medicação , Relações Médico-Paciente , Adulto , Idoso , Idoso de 80 Anos ou mais , Alopurinol/administração & dosagem , Alopurinol/efeitos adversos , Alopurinol/uso terapêutico , Feminino , Gota/sangue , Supressores da Gota/administração & dosagem , Supressores da Gota/efeitos adversos , Humanos , Assistência de Longa Duração/métodos , Masculino , Pessoa de Meia-Idade , Motivação , Guias de Prática Clínica como Assunto , Pesquisa Qualitativa , Reumatologistas/psicologia , Reino Unido , Ácido Úrico/sangue , Ácido Úrico/metabolismo
11.
J Adv Nurs ; 72(6): 1335-46, 2016 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-26893125

RESUMO

AIMS: To explore the information needs of long-term indwelling urinary catheter users, the consequences for patients of inadequate information and how these needs could be met. BACKGROUND: Previous studies have drawn attention to the lack of information given to indwelling catheter users and how users would benefit from more. Little is known about the varied and detailed information needs of long-term indwelling catheter users. DESIGN: A qualitative interpretative approach was used, combining thematic analysis with constant comparison. A diverse sample of people living in the community with a catheter for 3 months or longer was recruited. METHODS: Interviews were conducted using a narrative approach. Thirty-six interviews were conducted in England, Wales and Scotland between 2011-2013. RESULTS: Participants ranged in age from 22-96 years. After having a catheter fitted they wanted more technical information about it and information to help prevent catheter-related physical problems (infection, blockage, leaking), on sexual activity and the siting of catheters and about managing a social life with a catheter. In its absence, patients sometimes experimented with the catheter, learning to live with it through trial and error, used the Internet to find out more, or contacted other patients or organizations. CONCLUSION: Research has consistently shown that indwelling catheter users need to be given more information but some patients still feel poorly informed. Nurses are in a good position to find out what people know, what they need, and to ensure that patients have contact phone numbers for further information and details of reliable websites and support organizations.


Assuntos
Informática Aplicada à Saúde dos Consumidores , Avaliação das Necessidades , Cateterismo Urinário , Cateteres Urinários , Adulto , Idoso , Idoso de 80 Anos ou mais , Inglaterra , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Escócia , País de Gales , Adulto Jovem
12.
Qual Health Res ; 26(2): 154-63, 2016 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-25646001

RESUMO

The design of the Foley catheter has not changed since 1937. Scientists interested in medical technology tend to focus on state-of-the-art designs for newsworthy specialties rather than the more mundane technologies of daily life. We interviewed 36 people living with a long-term urinary catheter in the United Kingdom, who described limitations of the current catheter design, including infections and complications and consequences for social life and relationships, and their perceptions of whose responsibility it was to improve the design. All took steps to hide the urine bag, but the need to use a catheter and urine bag had, for some, a very detrimental effect on social life and relationships. People living with long-term catheters are relatively isolated at home and dealing with many different underlying health problems, undermining opportunities to speak with a collective patient voice. Qualitative health researchers could act as a conduit to help stimulate new designs.


Assuntos
Qualidade de Vida/psicologia , Cateterismo Urinário/efeitos adversos , Cateterismo Urinário/psicologia , Cateteres Urinários/efeitos adversos , Adulto , Idoso , Idoso de 80 Anos ou mais , Antibacterianos/uso terapêutico , Feminino , Humanos , Entrevistas como Assunto , Efeitos Adversos de Longa Duração/tratamento farmacológico , Efeitos Adversos de Longa Duração/psicologia , Masculino , Pessoa de Meia-Idade , Autoimagem , Reino Unido , Estados Unidos , Adulto Jovem
13.
BMC Womens Health ; 15: 122, 2015 Dec 28.
Artigo em Inglês | MEDLINE | ID: mdl-26710971

RESUMO

BACKGROUND: Gout is more common in men, and is often perceived by both patients and health practitioners to be a disorder of men, but its prevalence in women is increasing. Little is known about women's experience of gout and the impact it has on their lives. It is important for practitioners to be aware of these areas, given the increasing numbers of women with gout they are likely to see in the future. This study aimed to explore women's experiences of gout. METHODS: A qualitative research design was used. Semi-structured interviews were conducted with 43 people, of whom 14 were women. Interviews were video and/or tape recorded and transcribed verbatim. Data from the interviews was first grouped into broad categories, followed by a more detailed thematic analysis and interpretation. RESULTS: Participants' ages ranged from 32 to 82. Nine participants were retired and five were in fulltime work. Four themes emerged: (1) experience of onset, help seeking and diagnosis (2) understanding and finding information about gout, (3) impact on identity, and (4) impact on roles and relationships. CONCLUSIONS: The diagnostic process for women with gout can be uncertain due to lack of awareness of gout in women (by health care professionals and women themselves). Women do not have a good understanding of the condition and find it difficult to find information that feels relevant to them. Gout has a major impact on women's identity and on their roles and relationships. These findings are of importance to health care professionals dealing with women with potential gout and those with an existing diagnosis.


Assuntos
Atitude Frente a Saúde , Gota/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Gota/complicações , Gota/diagnóstico , Gota/terapia , Humanos , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade de Vida , Saúde da Mulher
14.
BMJ Open ; 5(9): e008323, 2015 Sep 14.
Artigo em Inglês | MEDLINE | ID: mdl-26369796

RESUMO

OBJECTIVE: To explore patients' experiences from initial symptoms to receiving a diagnosis of gout. DESIGN: Data from in-depth semistructured interviews were used to construct themes to describe key features of patients' experiences of gout diagnosis. PARTICIPANTS AND SETTING: A maximum variation sample of 43 UK patients with gout (29 men; 14 women; age range 32-87 years) were recruited from general practices, rheumatology clinics, gout support groups and through online advertising. RESULTS: Severe joint pain, combined with no obvious signs of physical trauma or knowledge of injury, caused confusion for patients attempting to interpret their symptoms. Reasons for delayed consultation included self-diagnosis and/or self-medication, reluctance to seek medical attention, and financial/work pressures. Factors potentially contributing to delayed diagnosis after consultation included reported misdiagnosis, attacks in joints other than the first metatarsophalangeal joint, and female gender. The limitations in using serum uric acid (SUA) levels for diagnostic purposes were not always communicated effectively to patients, and led to uncertainty and lack of confidence in the accuracy of the diagnosis. Resistance to the diagnosis occurred in response to patients' beliefs about the causes of gout and characteristics of the people likely to be affected. Diagnosis prompted actions, such as changes in diet, and evidence was found of self-monitoring of SUA levels. CONCLUSIONS: This study is the first to report data specifically about patients' pathways to initial consultation and subsequent experiences of gout diagnosis. A more targeted approach to information provision at diagnosis would improve patients' experiences.


Assuntos
Anti-Inflamatórios não Esteroides/uso terapêutico , Medicina Geral , Supressores da Gota/uso terapêutico , Gota/psicologia , Satisfação do Paciente/estatística & dados numéricos , Adulto , Estudos de Avaliação como Assunto , Feminino , Gota/diagnóstico , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Relações Profissional-Paciente
15.
J Wound Ostomy Continence Nurs ; 42(2): 170-5, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25734461

RESUMO

PURPOSE: To explore why men and women decide to have a suprapubic catheter, how the decision is made, and to compare people's experiences of suprapubic and transurethral catheterization for long-term bladder drainage. DESIGN: Narrative interviews followed by thematic analysis. SUBJECTS AND SETTING: Thirty-six long-term catheter users living in England, Wales, or Scotland were interviewed. The sample included men and women from various socioeconomic backgrounds, with a wide range of conditions. They were aged 22 to 96 years (M = 57 years). METHODS: Interviews lasted between 1 and 3 hours; they were audiotaped and fully transcribed for analysis. A qualitative interpretive approach was taken, combining thematic analysis with constant comparison. RESULTS: Some respondents were satisfied with or preferred a urethral catheter; others preferred a suprapubic catheter because they perceived that suprapubic catheters led to fewer infections, were more hygienic, more comfortable, improved self-image, allowed a sense of control, and were better suited for sexual relations. Participants also mentioned the decision-making process, including how the decision was made to have a suprapubic catheter and where to insert the catheter at a particular point in the abdomen. Even with a suprapubic catheter, some worried about sex or were put off sexual intimacy because of the catheter. CONCLUSION: Our findings suggest that patients should be better informed before a suprapubic catheter is inserted and that issues such as sex should be raised in consultations when appropriate.


Assuntos
Cistostomia/normas , Drenagem/enfermagem , Bexiga Urinária/cirurgia , Cateterismo Urinário/métodos , Cateterismo Urinário/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Percepção , Pesquisa Qualitativa
16.
Br J Gen Pract ; 64(623): e364-71, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-24868074

RESUMO

BACKGROUND: An indwelling urinary catheter can solve the problem of incontinence and may be life-saving in individuals with retention, but it can cause problems such as infection and may have a negative impact on body image, sex, and sexuality. AIM: To explore the individual's perceptions of how a long-term urinary catheter can affect body image, sex, and sexuality; and to help GPs to discuss the subject in consultations. DESIGN AND SETTING: Qualitative study of a diverse sample of individuals living with a long-term urinary catheter. Interviews took place all over the UK, usually in the individuals' homes. METHOD: Narrative interviews were audiorecorded, transcribed, and analysed thematically, using the constant comparative method. RESULTS: Some individuals said that sex was not an important part of their lives because of old age, illness, or the catheter. Others talked about how their catheter and their disability affected their sexual self-esteem, feelings of masculinity or femininity, and how the catheter caused pain, discomfort, or unexpected symptoms during sex. Many noted the lack of information on the subject and also said that health professionals were reluctant to talk about sex. For a minority a catheter was not a major problem in relation to sex. CONCLUSION: Some individuals using a urinary catheter would benefit from information on how to have a sexual relationship with a catheter in place and a chance to discuss the subject with their doctors. GPs need to be aware that sex may matter to a person with a catheter and how illness, disability, and a catheter may affect sexuality.


Assuntos
Imagem Corporal/psicologia , Qualidade de Vida , Autoimagem , Comportamento Sexual/psicologia , Cateterismo Urinário/psicologia , Adaptação Fisiológica , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Cateteres de Demora , Feminino , Medicina Geral/métodos , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Medição de Risco , Estudos de Amostragem , Fatores Sexuais , Sexualidade , Reino Unido , Cateterismo Urinário/instrumentação , Cateteres Urinários , Adulto Jovem
17.
Br J Community Nurs ; 18(12): 591-6, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-24335792

RESUMO

Understanding the patient's perspective in any area of health care is now recognised as being crucial to good practice, but little is known about patients' views on living with an indwelling urinary catheter. In this study, 36 people living with either a urethral or suprapubic catheter across the UK were interviewed. After thematic analysis, the authors interpreted what they learned. Many issues were raised, including the need to know who was responsible for changing the catheter, the importance of continuity of care, 24-hour access to services, and good hygiene. Patients valued nurses with training and experience, with plenty of time, who took care and who listened to what mattered to the patient. The patient's perspective is important at all levels, not only when designing and planning an integrated continence service, but also in delivering services in the community.


Assuntos
Cateteres de Demora , Satisfação do Paciente , Cateterismo Urinário/métodos , Cateterismo Urinário/enfermagem , Adulto , Idoso , Idoso de 80 Anos ou mais , Competência Clínica , Enfermagem em Saúde Comunitária , Feminino , Acessibilidade aos Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Narração , Relações Enfermeiro-Paciente , Pesquisa Qualitativa , Reino Unido , Uretra
18.
Nurs Times ; 109(44): 12, 14, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-24371877

RESUMO

Despite 450,000 people in the U.K. using long-term catheters, there is very little information available about the experience. This study aimed to gain an understanding of patients' perspectives of living with an indwelling urinary catheter.


Assuntos
Qualidade de Vida , Cateterismo Urinário/enfermagem , Cateterismo Urinário/psicologia , Cateteres Urinários , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Reino Unido , Adulto Jovem
19.
Crit Care ; 13(2): R46, 2009.
Artigo em Inglês | MEDLINE | ID: mdl-19338653

RESUMO

INTRODUCTION: UK policy recommendations advocate the use of intensive care unit (ICU) follow-up services to help detect and treat patients' physical and emotional problems after hospital discharge and as a means of service evaluation. This study explores patients' perceptions and experiences of these services. METHODS: Thirty-four former ICU patients were recruited throughout the UK, using maximum variation sampling to achieve as broad a range of experiences of the ICU as possible. Participants were interviewed at home by a qualitative researcher unconnected to their hospital care. Interviews were recorded and transcribed for analysis. We report a qualitative thematic analysis of patients' experiences of ICU follow up. RESULTS: Former patients said they valued ICU follow-up services, which had made an important contribution to their physical, emotional and psychological recovery in terms of continuity of care, receiving information, gaining expert reassurance and giving feedback to ICU staff. Continuity of care included having tests and being monitored, referrals to other specialists and ICU follow-up appointments soon after hospital discharge. Information about physical, emotional and psychological recovery was particularly important to patients, as was information that helped them make sense of their ICU experience. Those without access to ICU follow-up care often felt abandoned or disappointed because they had no opportunity to be monitored, referred or get more information. CONCLUSIONS: Former patients value having ICU follow-up services but many found that their healthcare needs were unmet because hospitals were unable to provide the aftercare they required. Most participants were aware of the financial constraints on the health system. Although they valued ICU follow-up care, they did not want it to continue indefinitely, with many of them declining appointment invitations when they themselves felt they no longer needed them.


Assuntos
Continuidade da Assistência ao Paciente , Unidades de Terapia Intensiva , Satisfação do Paciente , Adulto , Idoso , Feminino , Seguimentos , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Reino Unido
20.
Crit Care ; 12(1): R21, 2008.
Artigo em Inglês | MEDLINE | ID: mdl-18294370

RESUMO

INTRODUCTION: Many patients experience 'relocation stress' when they are transferred from an intensive care unit (ICU) to step-down (high dependency) or general ward care, and much has been written about the psychological causes. This qualitative analysis of in-depth, narrative interviews with former ICU patients explores and examines patients' accounts in order to identify additional causes of relocation stress. METHODS: Forty former ICU patients were recruited throughout the UK, using maximum variation sampling, to achieve a broad range of experiences of intensive care. Interviews in people's homes were recorded on video and audio equipment as part of a study for the Database of Personal Experiences of Health and Illness (DIPEx) web resource. All interviews were transcribed, checked and returned to respondents. For this report, a qualitative thematic analysis was used to explore experiences of transfer. RESULTS: We found that most people experienced relocation distress not only because of physical and emotional difficulties relating to their illness and treatment and the inevitable anxiety resulting from leaving a protected environment, but also from concrete, practical causes. These included specific concerns about communication, feeding, nursing care and support, as well as ward organization and environment. Written excerpts from the interviews and two video excerpts taken from the DIPEx website illustrate our findings. CONCLUSION: We conclude that there are several aspects of care that deserve further examination by researchers and service providers, and that not all of the factors associated with relocation stress should be seen as an inevitable consequence of the psychological adjustment involved in transfer from an ICU.


Assuntos
Ansiedade/psicologia , Unidades de Terapia Intensiva/estatística & dados numéricos , Entrevistas como Assunto , Satisfação do Paciente , Transferência de Pacientes , Estresse Psicológico/etiologia , Adulto , Idoso , Feminino , Humanos , Tempo de Internação , Masculino , Pessoa de Meia-Idade
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