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1.
Xenotransplantation ; 31(3): e12860, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38716636

RESUMO

BACKGROUND: Recent advances mean that formal clinical trials of solid organ xenotransplantation are increasingly likely to begin and patients requiring a kidney transplant could be the first participants. Healthcare workers and healthcare students constitute the current and future workforce that will influence public opinion of xenotransplantation. The attitudes of these populations are important to consider before recruitment for formal clinical trials begins. METHODS: This scoping review was reported according to the PRISMA extensions for scoping reviews checklist and the Joanna Briggs Institute methodology for scoping reviews. The Scopus, PubMed, and ScienceDirect databases were searched to identify articles that studied the attitudes of healthcare workers, healthcare students, or kidney patients toward xenotransplantation. RESULTS: The search generated 816 articles, of which 27 met the eligibility criteria. The studies were conducted in 14 different countries on five different continents. Participants from the 27 studies totaled 29,836-this was constituted of 6,223 (21%) healthcare workers, 21,067 (71%) healthcare students, and 2,546 (8%) kidney patients. All three groups had an overall positive attitude toward xenotransplantation. However, in studies where participants were asked to consider xenotransplantation when the risks and results were not equal to allotransplantation-the overall attitude switched from positive to negative. The results also found that Spanish-speaking populations expressed more favorable views toward xenotransplantation compared to English-speaking populations. CONCLUSION: The results of this review suggest that while attitudes of the three groups toward xenotransplantation are-on the face of it-positive, this positivity deteriorates when the risks and outcomes are framed in more clinically realistic terms. Only formal clinical trials can determine how the risks and outcomes of xenotransplantation compare to allotransplantation.


Assuntos
Pessoal de Saúde , Transplante de Rim , Transplante Heterólogo , Humanos , Atitude do Pessoal de Saúde , Animais
2.
J Ment Health ; : 1-7, 2024 Apr 08.
Artigo em Inglês | MEDLINE | ID: mdl-38588707

RESUMO

BACKGROUND: Early intervention for people diagnosed with bipolar disorder has been identified as a priority, but little is known about how existing early intervention services are experienced by this group or could be tailored to their needs. AIMS: This study examined the experience of early intervention in psychosis (EIP) services for people diagnosed with bipolar disorder, following first episode psychotic mania. METHOD: Semi-structured interviews were conducted with 11 adults in EIP services and analysed using Interpretative Phenomenological Analysis. RESULTS: One superordinate theme was formed, Rebuilding within EIP service, consisting of five subthemes: (i) Piecing together episode through talking to staff; (ii) Exploring other perspectives during CBT; (iii) Empowered through shared decision-making; (iv) Reconsidering future and purpose; (v) Service as safety-net. EIP provision was pivotal in helping participants understand their episode, adjust their perspective, build confidence and progress. CONCLUSIONS: Aspects of the service that were valued, including person-centred relationships with staff, shared decision-making and the development of motivation and opportunities, reflect key principles of mental health care for young people following first episode psychosis. Furthermore, findings point to elements that may be particularly relevant to early intervention following first episode psychotic mania including managing mood escalation and individualised approaches to goals.

3.
Lancet ; 403(10433): 1254-1266, 2024 Mar 30.
Artigo em Inglês | MEDLINE | ID: mdl-38461840

RESUMO

BACKGROUND: Mental health difficulties are common in children and young people with chronic health conditions, but many of those in need do not access evidence-based psychological treatments. The study aim was to evaluate the clinical effectiveness of integrated mental health treatment for children and young people with epilepsy, a common chronic health condition known to be associated with a particularly high rate of co-occurring mental health difficulties. METHODS: We conducted a parallel group, multicentre, open-label, randomised controlled trial of participants aged 3-18 years, attending epilepsy clinics across England and Northern Ireland who met diagnostic criteria for a common mental health disorder. Participants were randomised (1:1; using an independent web-based system) to receive the Mental Health Intervention for Children with Epilepsy (MICE) in addition to usual care, or assessment-enhanced usual care alone (control). Children and young people in both groups received a full diagnostic mental health assessment. MICE was a modular psychological intervention designed to treat common mental health conditions in children and young people using evidence-based approaches such as cognitive behaviour therapy and behavioural parenting strategies. Usual care for mental health disorders varied by site but typically included referral to appropriate services. Participants, along with their caregivers, and clinicians were not masked to treatment allocation but statisticians were masked until the point of analysis. The primary outcome, analysed by modified intention-to-treat, was the parent-report Strengths and Difficulties Questionnaire (SDQ) at 6 months post-randomisation. The study is complete and registered with ISRCTN (57823197). FINDINGS: 1401 young people were potentially deemed eligible for study inclusion. Following the exclusion of 531 young people, 870 participants were assessed for eligibility and completed the SDQ, and 480 caregivers provided consent for study inclusion between May 20, 2019, and Jan 31, 2022. Between Aug 28, 2019, and Feb 21, 2022, 334 participants (mean ages 10·5 years [SD 3·6] in the MICE group vs 10·3 [4·0] in control group at baseline) were randomly assigned to an intervention using minimisation balanced by age, primary mental health disorder, diagnosis of intellectual disability, and autistic spectrum disorder at baseline. 168 (50%) of the participants were female and 166 (50%) were male. 166 participants were randomly assigned to the MICE group and 168 were randomly assigned to the control group. At 6 months, the mean SDQ difficulties for the 148 participants in the MICE group was 17·6 (SD 6·3) and 19·6 (6·1) for the 148 participants in the control group. The adjusted effect of MICE was -1·7 (95% CI -2·8 to -0·5; p=0·0040; Cohen's d, 0·3). 14 (8%) patients in the MICE group experienced at least one serious adverse event compared with 24 (14%) in the control group. 68% percent of serious adverse events (50 events) were admission due to seizures. INTERPRETATION: MICE was superior to assessment-enhanced usual care in improving symptoms of emotional and behavioural difficulties in young people with epilepsy and common mental health disorders. The trial therefore shows that mental health comorbidities can be effectively and safely treated by a variety of clinicians, utilising an integrated intervention across ages and in the context of intellectual disability and autism. The evidence from this trial suggests that such a model should be fully embedded in epilepsy services and serves as a model for other chronic health conditions in young people. FUNDING: UK National Institute for Health Research Programme Grants for Applied Research programme and Epilepsy Research UK Endeavour Project Grant.


Assuntos
Epilepsia , Deficiência Intelectual , Adolescente , Criança , Feminino , Humanos , Masculino , Análise Custo-Benefício , Inglaterra , Epilepsia/terapia , Saúde Mental , Intervenção Psicossocial , Resultado do Tratamento , Pré-Escolar
4.
PLoS One ; 18(7): e0288295, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37478122

RESUMO

Multiple Sclerosis (MS) is characterised by significant symptom diversity and complexity. The unpredictability of the symptoms and the emotional and cognitive facets of the disease have a significant impact on the patients' quality of life, relationships and other significant areas of living. Psychological interventions have been found to have moderate effects on quality of life, depression, stress reduction, improvement of wellbeing, anxiety, fatigue, sleep disturbances and emotion regulation. Most interventions so far are based on generic models of therapy which cannot always cover the complexity and unpredictability of MS. The present research project follows from an exploratory mixed method study on the experience of psychological interventions and the impact on the management of MS. The results of that study generated themes that led to the development of an integrative group psychological intervention named MyMS-Ally. The current study aims to explore the feasibility and acceptability of MyMS-Ally intervention and obtain preliminary data on the effects on quality of life, emotion regulation, depression and anxiety through the application of a convergent mixed methods design. People with MS will be recruited at the Bristol and Avon Multiple Sclerosis centre, North Bristol NHS Trust. They will participate in MyMS-Ally group intervention for 8 weeks. Individual semi-structured interviews drawing on Interpretative Phenomenological methodology will be conducted before and after the intervention and at three months follow up. Participants will complete quantitative measures on quality of life, emotion regulation, depression and anxiety before and after the intervention and at one and three months follow up. The aim is to explore the relevance, sustainability and adherence to the intervention and study processes (feasibility) as well as the appropriateness of the intervention based on the emotional and cognitive responses, satisfaction and perceived effectiveness (acceptability). It is aspired that this patient-centred psychological intervention will address needs and preferences of people with MS. The results of the present study will provide data for further development of the intervention and will lead to a big scale evaluation study.


Assuntos
Esclerose Múltipla , Humanos , Esclerose Múltipla/terapia , Esclerose Múltipla/psicologia , Intervenção Psicossocial , Qualidade de Vida , Estudos de Viabilidade , Ansiedade/terapia , Ansiedade/psicologia
5.
Early Interv Psychiatry ; 17(8): 807-813, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36646667

RESUMO

AIM: Early intervention for people diagnosed with bipolar disorder is a priority, but little is known about how recovery from first episode psychotic mania is experienced by this group. This study aimed to explore the experience of recovery from first episode psychotic mania for people diagnosed with bipolar disorder. METHODS: Semi-structured interviews were conducted with 11 young adults during recovery from first episode psychotic mania and were analysed using Interpretative Phenomenological Analysis. RESULTS: Three themes were identified: (i) 'Possession of purpose and staying well', (ii) 'Coping with compromise' and (iii) 'Manic relapse: pressure and proving self'. On becoming well, the participants experienced a sense of purpose through engaging with activities and goals that also drove their efforts to engage in strategies to stay well. However, these strategies created feelings of compromise that not all were prepared to accept. Though having purpose and goals created a positive sense of direction, for a minority of the participants they also created additional pressure, contributing to manic relapse. CONCLUSIONS: The purpose created by engaging with aspirations and career-related activities during early intervention was found to be important for a meaningful recovery from first episode bipolar disorder. This instilled positivity and purpose, motivating efforts to maintain wellness. The feelings of compromise that some participants experienced point to the need for individually tailored interventions. Findings suggest a delicate relationship between the positivity of engaging in goals and the risk of manic relapse during recovery from first episode psychotic mania.


Assuntos
Transtorno Bipolar , Adulto Jovem , Humanos , Transtorno Bipolar/diagnóstico , Mania , Emoções , Recidiva
6.
Front Pain Res (Lausanne) ; 3: 901271, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36204722

RESUMO

Chronic pain is a common, profoundly disabling and complex condition whose effects on identity may explain the distress experienced by those affected by it. This paper concerns a study exploring how the relationship with pain and sense of self evolved following participation in a pain management program (PMP). Participants were interviewed at three timepoints: before attending a PMP, 1 month after the PMP and 6 months after the PMP. To facilitate a deep experiential description of pain and its effects, interviews were guided by participant-generated drawings of pain and Self. Interviews and drawings were analyzed longitudinally using interpretative phenomenological analysis. The evolving experience of participants was outlined through different trajectory types. Here we describe the upward and positive trajectory of three female participants who were able to regain control over their lives. From a state of psychological stress where pain was represented as an aggressive and oppressive presence, participants' drawings, their narratives and indeed their lives, changed for the best. Pain stopped being the main feature, they were able to integrate it into their lives, make important changes and find a new balance. The results demonstrate the idiosyncratic nature of chronic pain and offer a nuanced account of its links to the lifeworld of those living with it.

7.
Lancet Psychiatry ; 7(5): 420-430, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-32353277

RESUMO

BACKGROUND: Multisystemic therapy is a manualised treatment programme for young people aged 11-17 years who exhibit antisocial behaviour. To our knowledge, the Systemic Therapy for At Risk Teens (START) trial is the first large-scale randomised controlled trial of multisystemic therapy in the UK. Previous findings reported to 18 months after baseline (START-I study) did not indicate superiority of multisystemic therapy compared with management as usual. Here, we report outcomes of the trial to 60 months (START-II study). METHODS: In this pragmatic, randomised, controlled, superiority trial, young people (aged 11-17 years) with moderate-to-severe antisocial behaviour were recruited from social services, youth offending teams, schools, child and adolescent mental health services, and voluntary services across England, UK. Participants were eligible if they had at least three severity criteria indicating past difficulties across several settings and one of five general inclusion criteria for antisocial behaviour. Eligible families were randomly assigned (1:1), using stochastic minimisation and stratifying for treatment centre, sex, age at enrolment, and age at onset of antisocial behaviour, to management as usual or 3-5 months of multisystemic therapy followed by management as usual. Research assistants and investigators were masked to treatment allocation; the participants could not be masked. For this extension study, the primary outcome was the proportion of participants with offences with convictions in each group at 60 months after randomisation. This study is registered with ISRCTN, ISRCTN77132214, and is closed to accrual. FINDINGS: Between Feb 4, 2010, and Sept 1, 2012, 1076 young people and families were assessed for eligibility and 684 were randomly assigned to management as usual (n=342) or multisystemic therapy (n=342). By 60 months' of follow-up, 188 (55%) of 342 people in the multisystemic therapy group had at least one offence with a criminal conviction, compared with 180 (53%) of 341 in the management-as-usual group (odds ratio 1·13, 95% CI 0·82-1·56; p=0·44). INTERPRETATION: The results of the 5-year follow-up show no evidence of longer-term superiority for multisystemic therapy compared with management as usual. FUNDING: National Institute for Health Research Health Services and Delivery Research programme.


Assuntos
Comportamento do Adolescente , Comunicação , Transtorno da Conduta/reabilitação , Crime/estatística & dados numéricos , Terapia Familiar/métodos , Delinquência Juvenil/reabilitação , Poder Familiar , Apoio Social , Adaptação Psicológica , Adolescente , Terapia de Controle da Ira , Transtorno da Personalidade Antissocial , Criança , Inglaterra , Feminino , Visita Domiciliar , Humanos , Masculino , Relações Pais-Filho , Rede Social , Resultado do Tratamento
8.
Hum Reprod ; 35(4): 876-885, 2020 04 28.
Artigo em Inglês | MEDLINE | ID: mdl-32268357

RESUMO

STUDY QUESTION: What is it like for women to be involuntarily childless in midlife? SUMMARY ANSWER: Involuntarily childless women may be suffering from prolonged grief due to its ambiguous and intangible nature; however, they are also striving to find ways of dealing with their internal pain in order to live with their loss. WHAT IS KNOWN ALREADY: Many studies examining issues around human reproduction have tended to place childlessness in the realm of medicalised infertility and report generalised mental issues, such as depression and psychological distress, existing amongst women undergoing fertility treatments. Few studies, however, have focused on the individual with regard to the experiential significance of involuntary childlessness and living beyond the phase of trying for a baby. STUDY DESIGN, SIZE, DURATION: A phenomenologically oriented person-centred qualitative design was used. In-depth semi-structured interviews were conducted with 12 White British women, who identified themselves as involuntarily childless, recruited via three leading childless support networks in the UK. PARTICIPANTS/MATERIALS, SETTING, METHODS: In order to retain an idiographic commitment to the detailed account of a person's experience, a homogeneous and purposive sampling was used applying the following criteria: women aged between 45 and 55; in long-term heterosexual relationships with no adopted children, stepchildren or children of a partner from a previous marriage or relationship; and no longer trying to have a child. Considering the homogeneity of ethnic background and wishing to respect cultural differences, this study focused on White British women living in the UK. Of the 12, one woman was found to not meet the criteria, and therefore, the experiential data of 11 interviews were used for the study and analysed using interpretative phenomenological analysis (IPA). MAIN RESULTS AND THE ROLE OF CHANCE: Two higher-order levels of themes that illustrate intrapersonal features were identified: the intrapersonal consequences of loss and confronting internal pain. The former explicated the depth of internal pain while the latter revealed ways in which the participants deal with it in their everyday lives. The important finding here is that both themes are co-existing internal features and dynamically experienced by the participants as they live with the absence of much-hoped-for children. LIMITATIONS, REASONS FOR CAUTION: Given the homogeneous sampling and the small number of participants, which is consistent with IPA, we want to be cautious in generalising our study findings. WIDER IMPLICATIONS OF THE FINDINGS: This study offers the view that there might be potential mental health issues surrounding involuntary childlessness that are currently overlooked. Particularly because the loss of hope cannot be pathologised, and the grief is ambiguous and intangible, it might make people's grieving process more complicated. An ongoing sense of uncertainty also may persist in that involuntarily childless people may develop symptoms similar to those diagnosed with prolonged grief disorder (PGD). The overall findings elucidate the need for clinicians, counsellors and health professionals to be aware of the possible association with PGD and promote long-term support and care in helping to maintain psychological well-being for people dealing with involuntary childlessness. Furthermore, this research points to an educational application for younger people by offering information beyond an explanation of infertility and fertility treatment, helping to understand the lived experience of involuntary childlessness. STUDY FUNDING/COMPETING INTEREST(S): No funding was obtained for this study. The authors have no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: Not applicable.


Assuntos
Infertilidade , Ansiedade , Criança , Família , Feminino , Pesar , Humanos , Casamento , Pessoa de Meia-Idade
9.
J Genet Couns ; 29(6): 1015-1025, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32077165

RESUMO

Huntington's disease (HD) is an inherited neurodegenerative disorder characterized by motor problems, cognitive impairment, and mood disturbances. Given the emotional elements of both HD itself and the testing process for it, psychological interventions may be helpful for those families impacted by HD. A stand-alone genetic counseling narrative group has been offered by one regional genetics clinic in the north of England to support people's coping following predictive genetic testing for HD. Groups are held 4-5 times per year with patients attending a group on a single occasion. This study assessed participants' experiences of attending a group using the qualitative method interpretative phenomenological analysis (IPA). Telephone interviews were conducted with 12 people who had a mutation-positive HD predictive test result and who had taken part in a genetic counseling narrative group session between November 2017 and February 2018. Participants were asked about their experiences of the group and any impact it had had on their lives. Four themes emerged: 'The power of the group, 'Active elements of the narrative exercise', 'Subsequent impact of the session', and 'Another voice'. Participants described the positive impact of being able to meet and empathize with others in a similar situation, the group's positive impact on their mood and future outlook, and its beneficial impact on disclosure. While most participants were positive about the session, the final theme presented the voices of two participants for whom the groups were poorly timed. Given the sessions' generally positive impact, we recommend other centers consider offering people impacted by HD similar sessions.


Assuntos
Aconselhamento Genético/normas , Doença de Huntington/genética , Adaptação Psicológica , Adulto , Emoções , Inglaterra , Feminino , Testes Genéticos , Humanos , Doença de Huntington/psicologia , Masculino , Pessoa de Meia-Idade , Narração
10.
AIDS Behav ; 23(9): 2514-2521, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31520239

RESUMO

To inform the development of interventions to increase uptake and adherence to antiretroviral therapy (ART), we explored perceptions of ART in semi-structured interviews with 52 men and women from UK black African and black Caribbean communities. Verbatim transcripts were analyzed using framework analysis. Perceptions of ART could be grouped into two categories: doubts about the personal necessity for ART and concerns about potential adverse effects. Doubts about necessity stemmed from feeling well, doubts about the efficacy of ART, religious beliefs and the belief that treatment was futile because it could not cure HIV. Concerns about adverse effects included the fear that attending HIV services and taking treatment would lead to disclosure of HIV, feeling overwhelmed at the prospect of starting treatment soon after diagnosis, fears about side effects and potential long-term effects, and physical repulsion. The findings will facilitate the development of interventions to increase uptake and adherence to ART.


Assuntos
População Negra/psicologia , Medo , Infecções por HIV/tratamento farmacológico , Adesão à Medicação/psicologia , Adulto , África Subsaariana/etnologia , População Negra/etnologia , Região do Caribe/etnologia , Estudos Transversais , Revelação , Feminino , Infecções por HIV/psicologia , Humanos , Entrevistas como Assunto , Masculino , Adesão à Medicação/etnologia , Pessoa de Meia-Idade , Percepção , Pesquisa Qualitativa , Religião , Estigma Social , Reino Unido/epidemiologia
11.
Parkinsons Dis ; 2019: 1937235, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30854185

RESUMO

Deep brain stimulation of the subthalamic nucleus (STN-DBS) is an effective treatment for Parkinson's disease (PD). In this study, we used an interpretative phenomenological analysis to explore how 10 male people with PD experienced life after STN-DBS surgery. Two themes emerged. The first, "Healed and relieved: all that glitters is not gold," highlights the benefits and the personal "costs" of surgery. The second, "The change within: new interpretations of the present and future unfold," explores how patients reinterpreted their lives as individuals and members of society in the present and as they face their future. Relief, gratitude, disappointment, and the need for social support are expressed as well as a new appraisal of values and the future. STN-DBS alters the life course of people with PD, and this study provides new insight into psychological and social issues that surgery raises for the patient and their family system. These psychosocial issues should be taken into account when preparing the patient and their family for surgery or supporting them postoperatively.

12.
Qual Health Res ; 28(12): 1955-1958, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-30241456

RESUMO

In this article, I present a rebuttal of Max Van Manen's critique of interpretative phenomenological analysis (IPA). Unfortunately, Van Manen's piece contains a series of misrepresentations of IPA and its history. Here, I answer these misrepresentations and present IPA as subscribing, and contributing, to a broad and holistic phenomenology concerned with both prereflective and reflective domains of lived experience. I contend that IPA has much to offer to our understanding of the experience of health and illness, where participants are spontaneously and actively engaged in making sense of the significant and unexpected things that happen to them.

13.
Br J Pain ; 12(3): 163-170, 2018 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-30057761

RESUMO

Combining participant drawings with interviews can stimulate deep reflection and allow the inexpressible to be expressed. This case study uses visual methods to illustrate the 9-month self-management journey of a female chronic pain sufferer. The participant drew a picture of her pain at each of three interviews, and the drawings were used to discuss the changing impact pain was having on her life. Drawings and transcripts were jointly analysed longitudinally using interpretative phenomenological analysis, revealing how, as control is regained, a sufferer's relationship with their chronic pain can visibly change and how the drawings, when reviewed retrospectively, enable insight and ownership of progress.

14.
Health Psychol ; 36(2): 143-151, 2017 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-27831706

RESUMO

OBJECTIVES: Ileostomy, in which the small intestine is redirected out of an abdominal wall so that waste is collected using a bag, is used to treat conditions including inflammatory bowel disease and colorectal cancer. This article reports an in-depth idiographic analysis of the experience of living with an ileostomy. METHOD: Twenty-one participants took part in semistructured interviews about their lives and relationships. Those interviews were transcribed verbatim and analyzed using the experiential qualitative methodology interpretative phenomenological analysis. RESULTS: Two superordinate themes arose from the data: ileostomy's intrapersonal impact and the impact of ileostomy on relationships with others. The authors found that ileostomy may destabilize the sense of self, disrupt body image, and alter experience of age and sexuality. Other participants were able to use their illness to positively reframe the self. Disclosure of ileostomy status was difficult for some. Intimate and friend relationships were often challenged by stoma status, whereas other family relationships were largely characterized as supportive. CONCLUSIONS: Ileostomy may impact upon both intra- and interpersonal aspects of the lives of those who live with it, in both negative and positive ways. Consequently, the sense of self can appear challenged, and relationships with partners, family members and friendships could be causes of distress. On the other hand, some partners were supportive, and children were found to be sources of comfort. (PsycINFO Database Record


Assuntos
Imagem Corporal/psicologia , Ileostomia/psicologia , Relações Interpessoais , Autoimagem , Comportamento Sexual/psicologia , Adaptação Psicológica , Adulto , Idoso , Emoções , Feminino , Amigos/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Parceiros Sexuais/psicologia , Sexualidade/psicologia , Adulto Jovem
15.
J Adv Nurs ; 72(11): 2662-2671, 2016 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-27298133

RESUMO

AIMS: The aim of this study was to explore treatment and healthcare experiences of people living with ileostomies, so nurses can build on best practice while caring for these patients. BACKGROUND: Ileostomies, where the small intestine is re-directed out of a stoma in the abdominal wall so waste is collected using a bag, are used to treat conditions including inflammatory bowel disease. Existing research suggests that although life with a stoma can be challenging, ileostomy patients are largely supported by multi-disciplinary teams. However, more research is needed to understand the nuances of these relationships and experiences of treatment, with a view to improving clinical care. DESIGN: Participants took part in semi-structured interviews consisting of open-ended questions about their experiences of life with an ileostomy and their treatments and time in hospital. Points of interest were followed up. Data were collected between July-December of 2014. METHODS: The qualitative method interpretative phenomenological analysis was used to analyse interviews with 21 people living with ileostomies. FINDINGS: We present findings from two clinical themes: Issues around treatment and Relationships with multi-disciplinary teams. Surgical complications were common and several participants reported concerns about addiction to painkillers. Varying attitudes were found around reversal surgery. Many reported experiencing distressing, dehumanizing care, while some felt supported by excellent healthcare providers. CONCLUSION: People living with ileostomies have a very mixed experience of multi-disciplinary teams and treatments and much could be done to support them more fully. For example, more information about ileostomies could be given to patients and more training given to nurses around stomas.


Assuntos
Atitude Frente a Saúde , Ileostomia/enfermagem , Emoções , Humanos , Cuidados de Enfermagem , Estomas Cirúrgicos
16.
AIDS Behav ; 20(9): 2151-63, 2016 09.
Artigo em Inglês | MEDLINE | ID: mdl-26767539

RESUMO

Antiretroviral therapy (ART) offers a powerful intervention in HIV but effectiveness can be compromised by inadequate adherence. This paper is a detailed examination of the experience of medication in a purposively selected group of people living with HIV. In-depth interviews were conducted with 10 HIV positive, West African women of black heritage living in London, UK. This group was of interest since it is the second largest group affected by HIV in the UK. Interviews were subjected to interpretative phenomenological analysis, an idiographic, experiential, qualitative approach. The paper details the women's negative experience of treatment. ART can be considered difficult and unrelenting and may be disconnected from the women's sense of health or illness. Participants' social context often exacerbated the difficulties. Some reported an improvement in their feelings about the medication over time. These findings point to some intrinsic and social motivators which could act as spurs to adherence.


Assuntos
Antirretrovirais/uso terapêutico , População Negra/psicologia , Emoções , Infecções por HIV/tratamento farmacológico , Adesão à Medicação/etnologia , Adulto , População Negra/etnologia , Feminino , Infecções por HIV/etnologia , Infecções por HIV/psicologia , Humanos , Entrevistas como Assunto , Londres/epidemiologia , Masculino , Adesão à Medicação/psicologia , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde/etnologia , Pesquisa Qualitativa , Estigma Social , Estereotipagem
17.
Psychol Health Med ; 21(7): 836-44, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-26584590

RESUMO

Demand for kidneys from deceased donors far outstrips supply. Despite this, there appears to be little research that focuses solely on the experience of waiting for a kidney from a deceased donor. This study uses the qualitative methodology interpretative phenomenological analysis to explore the lives of 10 people on the transplant list, with the aims of illuminating the potential psychological challenges those on the list may face during this time, and providing information to help clinicians more fully support such people in the future. Two themes connected to the experience of waiting - adjustment to the uncertainty of waiting and thinking about receiving a kidney from a living donor - are presented here. Participants describe a sense of confusion and uncertainty around life on the list, and discuss their strategies for dealing with this. Novel complexities around the ambiguous challenge of receiving an organ from a deceased donor are revealed. It is recommended that health care teams provide a forum for this patient group to work through these feelings of confusion and ambiguity.


Assuntos
Falência Renal Crônica/psicologia , Transplante de Rim/psicologia , Listas de Espera , Adulto , Atitude Frente a Saúde , Cadáver , Feminino , Humanos , Falência Renal Crônica/cirurgia , Doadores Vivos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Doadores de Tecidos , Incerteza , Adulto Jovem
18.
Spinal Cord Ser Cases ; 2: 16015, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-28053759

RESUMO

The paper presents an in-depth idiographic study exploring the experience of fathers who have an adult son with a cervical spinal cord injury (SCI). Five participants were recruited and individual semi-structured interviews were conducted. The interviews were transcribed verbatim and analyzed using interpretative phenomenological analysis. Two superordinate themes are presented highlighting. First, the ongoing negative impact of their sons' injury on the participants' role as fathers'. This comprises the negative impact on emotions with guilt common for failing in their perceived role as a father. The dissonance experienced between wanting to help encourage their sons' independence. Concern experienced due to their sons altered life trajectory and anxiety because they would not be alive to protect their son in the future. Second, how participants cope and adjust to their son's SCI are presented. Comprising of how positive thinking, such as focusing on their son surviving the trauma and the influence of seeing their son cope well affects how participants cope. Also, reflecting on how the injury has changed their life helps participants, to an extent, make sense of the trauma. The results are discussed in relation to the relevant extant literature to give a unique perspective about how SCI impacts their perceived role as fathers and the struggle to cope and adjust to the trauma. Future research investigating the impact of SCI on the family is warranted to better understand the wider implications.

19.
J Health Psychol ; 21(5): 650-60, 2016 05.
Artigo em Inglês | MEDLINE | ID: mdl-24801327

RESUMO

Four White British women who had not signed up to be organ donors were interviewed in depth to investigate their feelings on organ donation. Transcripts were analysed using Interpretative Phenomenological Analysis to reveal how the ability to detach from the body affects the acceptance of organ donation, how organ donation can trigger difficult thoughts and how the family can be used to explain not having signed up. The findings confirm previous empirical evidence but also offer original insight on the discrepancy between attitudes and behaviours, how fears can inhibit action and the importance of communicating organ donation wishes to family.


Assuntos
Atitude , Emoções , Doadores de Tecidos/psicologia , Obtenção de Tecidos e Órgãos , Adulto , Atitude Frente a Morte , Feminino , Humanos , Entrevistas como Assunto , Reino Unido
20.
J Health Psychol ; 21(11): 2600-2611, 2016 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-25930077

RESUMO

Much previous research into living kidney donation has focused on the decision-making of the donor, despite evidence suggesting this may be a more psychologically challenging time for the recipient. This longitudinal study explores the experiences of four recipients of kidneys from living donors throughout the transplant process. Transcripts were analysed using interpretative phenomenological analysis. Three themes arose from the data, which were as follows: changing perceptions of relationships with kidney donors; upbeat, temporal strategies for remaining positive and journey of the self. Findings from the first theme are presented in detail here. It was found that each participants' relationship with their donor grew and developed in different ways, presenting their own complex challenges in terms of developing relationships and ambiguity around the decision to use the chosen donor.

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