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1.
J Psychosoc Oncol ; 42(1): 113-147, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-37401811

RESUMO

PROBLEM IDENTIFICATION: Anxiety and depression are more prevalent in hematological cancer patients who experience unpredictable illness trajectories and aggressive treatments compared to solid tumor patients. Efficacy of psychosocial interventions targeted at blood cancer patients is relatively unknown. This systematic review examined trials of physical health and psychosocial interventions intending to improve levels of anxiety, depression, and/or quality of life in adults with hematological cancers. LITERATURE SEARCH: PubMed and CINAHL databases were used to perform a systematic review of literature using PRISMA guidelines. DATA EVALUATION/SYNTHESIS: Twenty-nine randomized controlled trials of 3232 participants were included. Thirteen studies were physical therapy, nine psychological, five complementary, one nutritional and one spiritual therapy interventions. Improvements were found in all therapy types except nutritional therapy. CONCLUSIONS: Interventions that included personal contact with clinicians were more likely to be effective in improving mental health than those without. IMPLICATIONS FOR PSYCHOSOCIAL ONCOLOGY: Various psychosocial interventions can be offered but interactive components appear crucial for generating long-standing improvements in quality of life, anxiety and depression.


Assuntos
Neoplasias Hematológicas , Neoplasias , Adulto , Humanos , Qualidade de Vida , Depressão/terapia , Intervenção Psicossocial , Ansiedade/terapia , Neoplasias/terapia , Ensaios Clínicos Controlados Aleatórios como Assunto
2.
Psychooncology ; 32(10): 1469-1480, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37565523

RESUMO

OBJECTIVE: Oropharyngeal cancer, a type of head and neck cancer (HNC), the incidence of which is increasing, often affects younger patients than traditional HNC, having distinct psychosocial consequences. Treatment side effects mean many rely on informal caregivers following (chemo)radiotherapy. The purpose of this review was to describe current understanding of the psychosocial experiences of these caregivers in the post-treatment phase. METHODS: A systematic search for relevant studies between January 2010 and October 2022 in three electronic databases (CINAHL, MEDLINE and PsycINFO) was followed by citation searching. Inclusion criteria were developed to ensure studies explored caregivers' experiences during the post-treatment phase following oropharyngeal cancer (chemo)radiotherapy. Thematic analysis informed by the 'Cancer Family Caregiving Experience Model', identified stressors, appraisals and responses. Themes evolved through the synthesis of recurrent concepts across the studies and a narrative of psychosocial experiences and their impact upon caregiver well-being was developed. RESULTS: Fifteen HNC papers which included exploration of the psychosocial experiences of oropharyngeal cancer caregivers following (chemo)radiotherapy were selected. Findings were synthesised to develop five themes: an emotional struggle, supporting nutrition, altered lifestyles, changes within relationships and support needs. CONCLUSIONS: The completion of (chemo)radiotherapy signalled a transition for these caregivers as they undertook burdensome responsibilities. Experiences indicated that preparation for the role, assessment of needs, and targeted support is required. Additionally, caregivers' recognition by healthcare professionals as caring partners could help moderate this demanding experience.

3.
Health Commun ; : 1-11, 2023 Aug 17.
Artigo em Inglês | MEDLINE | ID: mdl-37592450

RESUMO

Alcohol is a causal factor in about 10% of breast cancer (BCa) cases, but awareness of this link is low. This study explored how to raise awareness and inform the development of an intervention using the COM-B model (capability, opportunity, motivation, behavior) framework. Eight online focus groups were conducted with 36 participants (6 expert stakeholders,and 30 women aged 40-65). Participants reflected on a package of information about alcohol and BCa and discussed how to impart this information and encourage women to reduce drinking. Thematic analysis of focus group transcripts was undertaken. Three themes were identified: understanding ineffective messaging; transitions and challenges; and message acceptability. Current health information about alcohol was perceived as judgmental and BCa was put down to chance. Mid-life consisted of many challenges that could lead to increased consumption, but menopause transition may be a key moment for alcohol reduction. Barriers and enablers to communicating risk information and encouraging alcohol reduction were mapped onto the COM-B model. Psychological capability (relating to knowledge), social opportunity (in the form of social pressure) and automatic motivation (relating to drinking to cope) were barriers to behavior change.  These will be targeted in an alcohol reduction intervention. It is important to tailor information to women's experiences, taking into account the social benefits of drinking, and encourage the development of healthy coping strategies. Acceptable intervention messages may include personal stories, clear statistics, and suggest healthy alternatives to drinking. It is vital that messaging does not appear judgmental or patronizing.

4.
Psychooncology ; 31(12): 2009-2019, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-35726440

RESUMO

OBJECTIVE: The UK incidence of oropharyngeal cancer has risen sharply over the last 30 years with an increase in human papillomavirus (HPV) associated diagnoses, most prevalent in younger, working age populations. This meta-ethnography explores the psychosocial needs of HPV+ve oropharyngeal cancer patients during early recovery following (chemo)radiotherapy. METHODS: Meta-ethnography methods were used, based on the approach of Noblit and Hare. Systematic searches for relevant qualitative studies were conducted in five electronic databases (MEDLINE, PubMed, CINAHL, PsycINFO and Cochrane database) between 2010 and 2021, followed by citation searching. RESULTS: Twenty-three papers exploring the psychosocial needs of HPV+ve oropharyngeal cancer patients after treatment were included. Findings were synthesised to develop five constructs: 'gaps in continuity of support from healthcare professionals' reflecting unmet needs; 'changes to self-identity' revealing the comprehensive disruption of this disease and treatment; 'unrealistic expectations of recovery' highlighting the difficulty of preparing for the impact of treatment; 'finding ways to cope' describing the distinct complexity of this experience; and 'adjusting to life after the end of treatment' exploring how coping strategies helped patients to regain control of their lives. CONCLUSIONS: Completing (chemo)radiotherapy signalled a transition from hospital-based care to home-based support, challenging patients to address the constructs identified. An unexpectedly difficult and complex recovery meant that despite a favourable prognosis, poor psychosocial well-being may threaten a successful outcome. The provision of tailored support is essential to facilitate positive adjustment.


Assuntos
Alphapapillomavirus , Neoplasias Orofaríngeas , Infecções por Papillomavirus , Humanos , Antropologia Cultural , Adaptação Psicológica , Neoplasias Orofaríngeas/terapia , Papillomaviridae
5.
Eur J Cancer Care (Engl) ; 31(6): e13641, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-35789510

RESUMO

OBJECTIVE: The objective of this work was to explore head and neck cancer (HNC) patients' and their family members' views on acceptability and feasibility of patient-initiated follow-up (PIFU), including concerns and anticipated benefits. METHODS: Patients were recruited from UK HNC clinics, support groups and advocacy groups. They completed a survey (n = 144) and/or qualitative interview (n = 30), three with a family member. Qualitative data were analysed thematically, quantitative data using descriptive statistics. RESULTS: Preference for follow-up care in HNC was complex and individual. Many patients thought PIFU could beneficially reallocate health care resources and encourage self-management. Patients' main concerns with PIFU were losing the reassurance of regular clinic appointments and addressing mental well-being needs within PIFU, possibly using peer support. Patients were concerned about their ability to detect recurrence due to lack of expertise and information. They emphasised the importance of a reliable, direct and easy urgent appointment service and of feeling supported and heard by clinicians. Patients believed family and friends need support. CONCLUSION: PIFU may be feasible and acceptable for certain HNC patients, providing it addresses support for mental well-being, provides quick, reliable and direct clinician access and information on "red flag" symptoms, and ensures patients and their caregivers feel supported.


Assuntos
Neoplasias de Cabeça e Pescoço , Autogestão , Humanos , Seguimentos , Neoplasias de Cabeça e Pescoço/terapia , Cuidadores , Família
6.
J Sex Med ; 18(3): 515-525, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33642238

RESUMO

BACKGROUND: Men with prostate cancer (PCa) often experience sexual dysfunction following diagnosis and treatment, yet little is known about the support they receive to deal with this. AIM: To explore men's experiences of support for sexual dysfunction following PCa diagnosis. METHODS: This study included a U.K.-wide survey of men 18-42 months post-diagnosis of PCa, identified through cancer registries. The survey measured sexual function and the extent to which men perceived sexual dysfunction to be a problem (Expanded Prostate Cancer Index Composite-26), access to and experience of medications, devices, and specialist services for sexual dysfunction, and included a free-text question for further comments. Analysis focussed on men who reported poor sexual function, which they considered a moderate or big problem. Descriptive statistics explored the characteristics of men offered intervention and those that found this helpful. Free-text responses were analyzed using thematic analysis. OUTCOME: The main outcome of this study was to assess access to and experience of medications, devices, and specialist services for sexual dysfunction. RESULTS: 39.0% of all survey respondents (13,978/35,823) reported poor sexual function, which they considered a moderate or big problem. 51.7% of these men were not offered any intervention to aid sexual functioning. 71.9% of those offered an intervention reported trying it, of whom 48.7% found the intervention helpful. Men treated with surgery or brachytherapy were most likely to be offered an intervention. Medication was the most commonly offered intervention and 39.3% of those who tried medication found this helpful. Although offered less often, approximately half of the men who tried devices or attended specialist services found the intervention helpful. Free-text responses indicated that barriers to accessing support included inadequate information and support from healthcare professionals, embarrassment, negative views about treatment options, concerns about side effects and safety, and inconsistencies between secondary and primary care. Barriers to continuing use included limited effectiveness of treatments, inadequate ongoing support, and funding constraints. Drivers of sexual recovery included patient proactivity and persistence with trying different treatment options and ongoing support from health professionals. CLINICAL IMPLICATIONS: There is an urgent need to ensure that all men are offered, and have equal access to, sexual care support, with referral to specialist services when required. STRENGTHS & LIMITATIONS: This study presents data from a large, U.K.-wide, population-based study of men with PCa and includes quantitative and qualitative findings. The possibility of non-response bias should, however, be considered. CONCLUSION: There are significant shortcomings in the support offered to U.K. men with sexual dysfunction following diagnosis and treatment for PCa which need to be addressed. Watson E, Wilding S, Matheson L, et al. Experiences of Support for Sexual Dysfunction in Men With Prostate Cancer: Findings From a U.K.-Wide Mixed Methods Study. J Sex Med 2021;18:515-525.


Assuntos
Braquiterapia , Neoplasias da Próstata , Disfunções Sexuais Fisiológicas , Humanos , Masculino , Neoplasias da Próstata/complicações , Neoplasias da Próstata/terapia , Comportamento Sexual , Disfunções Sexuais Fisiológicas/etiologia , Disfunções Sexuais Fisiológicas/terapia , Inquéritos e Questionários
7.
Support Care Cancer ; 29(3): 1317-1325, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-32632762

RESUMO

PURPOSE: Due to recent treatment advances, men are increasingly living longer with advanced prostate cancer (PCa). This study sought to understand men's experiences of living with and adjusting to advanced hormone-responsive PCa and how this influenced their quality of life (QoL), in order to highlight how support could be optimized. METHODS: Participants were recruited through a UK wide survey-the 'Life After Prostate Cancer Diagnosis' study. In-depth telephone interviews were conducted with 24 men (aged 46-77 years) with advanced (stage IV) hormone-responsive PCa diagnosed 18-42 months previously. Thematic analysis was undertaken using a framework approach. RESULTS: Most participants perceived their QoL to be relatively good, which was influenced by the following factors (enablers to 'living well' with PCa): a sense of connectedness to others, engagement in meaningful activities, resources (social, cognitive, financial), ability to manage uncertainty, utilization of adjustment strategies and support, communication and information from health professionals. Barriers to 'living well' with PCa were often the converse of these factors. These also included more troublesome PCa-related symptoms and stronger perceptions of loss and restriction. CONCLUSIONS: In our study, men living with advanced hormone-responsive PCa often reported a good QoL. Exploring the influences on QoL in men with advanced PCa indicates how future interventions might improve the QoL of men who are struggling. Further research is required to develop and test interventions that enhance QoL for these men.


Assuntos
Neoplasias da Próstata/psicologia , Qualidade de Vida/psicologia , Idoso , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias da Próstata/mortalidade , Pesquisa Qualitativa , Análise de Sobrevida
8.
Health Promot Int ; 36(1): 132-142, 2021 Mar 12.
Artigo em Inglês | MEDLINE | ID: mdl-32386420

RESUMO

Lifecourse epidemiology suggests that preconception is a valuable opportunity for health promotion with young women. Yet young women are less likely than older women to be research participants, limiting evidence about their needs and risks. Marketing data indicate that young adults are not engaged with one advertising strategy because they transition through three life stages: (i) limited independence and focus on own interests, (ii) increased independence and time with peers and (iii) establishing a home and family. The aim of this study was to explore whether these marketing lifestage categories could inform the tailoring of strategies to recruit young women. Three focus groups per lifestage category were conducted (49 women aged 16-34 years). Lifestage category (i) was represented by further education students, category (ii) by women in workplaces and (iii) by mothers. Questions explored participants' lifestyles, identity, reasons for participation in the current study and beliefs about researchers. Three major themes were identified through framework analysis: profiling how young women spend their time; facilitators of participating in research and barriers to participating. Students and women in work valued monetary remuneration whereas mothers preferred social opportunities. Participants' perceived identity influenced whether they felt useful to research. All groups expressed anxiety about participation. Altruism was limited to helping people known to participants. Therefore, the marketing categories did not map exactly to differences in young women's motivations to participate but have highlighted how one recruitment strategy may not engage all. Mass media communication could, instead, increase familiarity and reduce anxiety about participation.


Assuntos
Promoção da Saúde , Motivação , Idoso , Feminino , Humanos , Estilo de Vida , Mães , Reino Unido , Adulto Jovem
9.
Eur J Cancer Care (Engl) ; 29(1): e13183, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31642565

RESUMO

OBJECTIVE: To explore adjustment strategies adopted by Black African (BA) and Black Caribbean (BC) men in the UK as a response to the impact of PCa diagnosis and treatment effects. METHODS: Men were recruited through the UK-wide 'Life After Prostate Cancer Diagnosis' (LAPCD) survey. Telephone interviews were conducted with men (n = 14) with BA and BC backgrounds between 18 and 42 months post-diagnosis. Data were analysed using a Framework approach. RESULTS: Most men (n = 12) were born outside the UK, were married (n = 9) and employed (n = 9). Median age was 66 years (range: 55-85). Six overarching themes emerged: a strong reliance upon faith beliefs; maintaining a 'positive' front; work as distraction; non-disclosure of diagnosis even amongst family members, influenced by stigma and masculinity concerns; active awareness-raising amongst a minority and support-seeking from close community. A few men emphasised a need to 'pitch' awareness-raising messages appropriately. Potential links existed between faith beliefs, presenting a positive front, community support-seeking and local awareness-raising. CONCLUSION: The provision of patient-centred care requires cultural sensitivity. Interventions that challenge stigma and men's reluctance to disclose problems associated with PCa and treatment may encourage help-seeking for symptom support. Research is needed to determine how best awareness-raising messages should be conveyed to black men.


Assuntos
Adaptação Psicológica , População Negra/psicologia , Ajustamento Emocional , Neoplasias da Próstata/psicologia , África/etnologia , Idoso , Idoso de 80 Anos ou mais , Região do Caribe/etnologia , Revelação , Humanos , Masculino , Masculinidade , Pessoa de Meia-Idade , Pesquisa Qualitativa , Religião , Estigma Social , Apoio Social , Reino Unido , Trabalho
10.
Psychooncology ; 28(7): 1567-1575, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-31132801

RESUMO

OBJECTIVE: To address concerns over the psychological impact of being on a monitoring pathway following prostate cancer (PCa) diagnosis, this study compared the psychological status of men on active surveillance (AS) or watchful waiting (WW) with men on active treatment (AT) and explored psychological adjustment in men on AS/WW. METHODS: Cross-sectional survey of UK men diagnosed with PCa 18 to 42 months previously (n = 16 726, localised disease at diagnosis) and telephone interviews with 24 men on AS/WW. Psychological outcomes were measured using two validated scales (Short Warwick-Edinburgh Mental Well-being Scale [SWEMWBS] and Kessler Psychological Distress Scale). Univariable and multivariable analyses compared outcomes between men on AS/WW and AT. Thematic analysis of interviews was undertaken, informed by a previously developed theory of adjustment to cancer. RESULTS: A total of 3986 (23.8%) respondents were on AS/WW. Overall, psychological outcomes were similar or better in men on AS/WW compared with those receiving AT (SWEMWBS: Poor well-being; 12.3% AS/WW vs 13.9% AT, adjusted OR = 0.86, 95% CI, 0.76-0.97; K6: severe psychological distress; 4.6% vs 5.4%, adjusted OR = 0.90, 95% CI, 0.74-1.08). Interviews indicated that most men on AS/WW had adjusted positively. Men with poorer well-being were less able to accept, reframe positively and normalise their diagnosis, described receiving insufficient information and support, and reported a lack of confidence in their health care professionals. CONCLUSIONS: Most men on AS/WW cope well psychologically. Men making treatment decisions should be given this information. Psychological health should be assessed to determine suitability for AS/WW, and at monitoring appointments. A clear action plan and support from health care professionals is important.


Assuntos
Preferência do Paciente/psicologia , Neoplasias da Próstata/psicologia , Conduta Expectante , Adulto , Idoso , Estudos Transversais , Tomada de Decisões , Progressão da Doença , Humanos , Masculino , Saúde Mental , Pessoa de Meia-Idade , Reino Unido
11.
Eur J Cancer Care (Engl) ; 28(4): e13039, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-30990233

RESUMO

OBJECTIVE: Written information can be an essential source of support in the promotion of lifestyle changes after a cancer diagnosis. This study aimed to identify and assess the quality of available online patient information materials (PIMs) in relation to diet and nutrition for patients with pelvic cancer. METHODS: The online sources of the National Health Service, cancer centres and charitable organisations throughout the UK were searched. Content was assessed using an evidence-based checklist, and readability with two validated formulas. Consumer feedback was sought through patient and public involvement (PPI) groups. RESULTS: Forty PIMs were identified; four were designed specifically for pelvic cancers (bladder, bowel, prostate) and 36 were generic (relevant for all cancers). Most PIMs had a good content score, with PIMs from charities scoring higher overall than PIMs from cancer centres [32 (4) vs. 23 (11), p < 0.001]. Seventy-three percent of PIMs had a readability score within acceptable levels (6th-8th grade; reading ability of 11-14 year-olds). PPI contributors found most PIMs useful and comprehensive but lacking specific information needed to meet individual needs. CONCLUSION: There is limited availability of online PIMs for cancer survivors and even fewer tailored to pelvic cancers. Most materials have comprehensive content and acceptable readability. Some PIMs may require improvement.


Assuntos
Informação de Saúde ao Consumidor/normas , Dieta Saudável , Internet , Terapia Nutricional , Neoplasias Pélvicas , Acesso à Informação , Institutos de Câncer , Instituições de Caridade , Neoplasias Colorretais , Compreensão , Prática Clínica Baseada em Evidências , Feminino , Humanos , Masculino , Neoplasias da Próstata , Medicina Estatal , Reino Unido , Neoplasias da Bexiga Urinária
12.
Qual Life Res ; 24(5): 1069-76, 2015 May.
Artigo em Inglês | MEDLINE | ID: mdl-25194573

RESUMO

PURPOSE: Recent years have witnessed growing international interest in the active involvement, or engagement [patient engagement (PE)], of patients and the public in health services research. However, there is limited evidence of the extent or impact of PE in health-related quality of life (HRQL) and patient-reported outcomes (PRO) research. Therefore, in October 2013, the International Society for Quality of Life research (ISOQOL) hosted its first symposium, which sought to explore the potential for PE in this field. METHODS: A 'World Café' format encouraged the exploration of three 'menu' questions' in small groups at round tables. Views, opinions and concerns were captured. A thematic analysis was undertaken, and key themes listed. RESULTS: Sixty conference attendees participated in the 'PE Café', which lasted for 90 min. A diversity of experience was communicated, with most participants positive about the potential for PE. Similarities and differences in approaches, barriers and solutions were identified. However, a key message focused on the uncertainty about how to effectively engage with patients throughout the research process. Moreover, the lack of evidence-base demonstrating the impact of PE was a significant concern. No patient partners participated in the meeting. CONCLUSION: This study describes the first international exploration of PE in HRQL and PRO research. Discussions highlighted that, in the absence of good practice guidelines, a framework or toolkit of how to embed PE within HRQL and PRO research is required. Moreover, this framework should support the rigorous evaluation of PE impact. ISOQOL should be instrumental in taking these ideas forward, actively engaging with patient partners towards shaping a future ISOQOL PE strategy.


Assuntos
Nível de Saúde , Avaliação de Resultados da Assistência ao Paciente , Participação do Paciente/métodos , Qualidade de Vida , Congressos como Assunto , Pesquisa sobre Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Autorrelato
13.
Health Expect ; 17(5): 637-50, 2014 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-22809132

RESUMO

BACKGROUND: There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research. OBJECTIVE: To identify the impact of patient and public involvement on health and social care research. DESIGN: A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon-Woods et al. (2005) checklist. INCLUSION CRITERIA: All study types that reported the impact PPI had on the health and/or social care research study. MAIN RESULTS: A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user-focused research objectives, development of user-relevant research questions, development of user-friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer-focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified. CONCLUSION: This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade.


Assuntos
Pesquisa Participativa Baseada na Comunidade , Pesquisa sobre Serviços de Saúde/métodos , Participação do Paciente , Seguridade Social , Pesquisa Participativa Baseada na Comunidade/métodos , Humanos , Participação do Paciente/métodos
14.
Int J Qual Health Care ; 26(2): 151-7, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24556816

RESUMO

OBJECTIVE: This paper presents the development of the Warwick Patient Experiences Framework (WaPEF) and describes how it informed the development of the NICE Guidance and Quality Standard, 'Patient experience in adult NHS services: improving the experience of care for people using adult NHS services'. DESIGN: The WaPEF was developed using a thematic qualitative overview that utilized a systematic review approach. Search strategies were developed, inclusion and exclusion criteria developed and data extracted from papers. RESULTS: The WaPEF identifies seven key generic themes that are important to a high-quality patient experience: patient as active participant, responsiveness of services, an individualized approach, lived experience, continuity of care and relationships, communication, information and support. CONCLUSIONS: The WaPEF is the first patient experiences framework with an explicit link to an underpinning patient evidence base, linking themes and sub-themes with specific references. The WaPEF informed the structure and content of the NICE Patient Experiences Guidance. The guidance, published in February 2012, will form a key part of the NHS Outcomes Framework in the UK for the future evaluation of health and social care. The proposed framework could be adapted to other country contexts and settings.


Assuntos
Satisfação do Paciente , Guias de Prática Clínica como Assunto , Qualidade da Assistência à Saúde/organização & administração , Medicina Estatal/organização & administração , Comunicação , Continuidade da Assistência ao Paciente , Análise Custo-Benefício , Pesquisas sobre Atenção à Saúde , Humanos , Participação do Paciente , Qualidade da Assistência à Saúde/normas , Medicina Estatal/normas , Fatores de Tempo , Reino Unido
15.
Patient Educ Couns ; 119: 108033, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37988772

RESUMO

OBJECTIVE: Current Head and Neck cancer (HNC) follow-up models are considered sub-optimal at detecting recurrences. We describe the development of a patient-initiated follow up (PIFU) trial intervention support package, to support HNC patients to engage in PIFU self-care behaviors. METHODS: An intervention mapping approach, informed by evidence synthesis, theory and stakeholder consultation, guided intervention development. Data sources included a patient survey (n = 144), patient interviews (n = 30), 7 workshops with patients (n = 25) and caregivers (n = 3) and 5 workshops with health professionals (n = 21). RESULTS: The intervention ('ACT now & check-it-out') comprises an education and support session with a health professional and an app and/or a booklet for patients. The main targets for change in patient self-care behaviors were: assessing what is normal for them; regularly checking for symptom changes; prompt help-seeking for persistent/new symptoms; self-management of fear of recurrence; engaging with the intervention over time. CONCLUSIONS: We have developed an evidence, person and theory-based intervention to support PIFU self-care behaviors in HNC patients. PRACTICE IMPLICATIONS: A trial is underway to assess the effectiveness and cost-effectiveness of the intervention. If successful, this intervention could be adapted for patients with other cancers or diseases, which is important given the recent shift towards PIFU pathways.


Assuntos
Neoplasias de Cabeça e Pescoço , Autogestão , Humanos , Seguimentos , Pessoal de Saúde , Cuidadores , Neoplasias de Cabeça e Pescoço/terapia
16.
BMJ Open ; 13(2): e060106, 2023 02 20.
Artigo em Inglês | MEDLINE | ID: mdl-36806143

RESUMO

OBJECTIVES: The psychological impact of a haematological malignancy is well documented. However, few studies have assessed the provision of psychological support to people with these diagnoses. This study explores the extent and nature of psychological support for people diagnosed with haematological cancer to inform future service provision. DESIGN: This study consisted of an online survey with healthcare professionals (phase 1) and qualitative interviews with patients (phase 2) and key health professionals (phase 3). A descriptive analysis of survey data and thematic analysis of interviews were conducted. PARTICIPANTS: Two hundred health professionals practising in England completed the survey. Twenty-five interviews were conducted with people diagnosed with haematological cancer in the past 3 years, and 10 with key health professionals, including haematologists, cancer nurse specialists and psychologists were conducted. PRIMARY OUTCOME MEASURES: Level of psychological assessment undertaken with people with haematological cancer, and level and nature of psychological support provided. RESULTS: Less than half (47.3%) of survey respondents strongly agreed/agreed that their patients were well supported in terms of their psychological well-being and approximately half (49.4%) reported providing routine assessment of psychological needs of patients, most commonly at the time of diagnosis or relapse. Patients described their need for psychological support, their experiences of support from health professionals and their experiences of support from psychological therapy services. There was considerable variation in the support patients described receiving. Barriers to providing psychological support reported by health professionals included time, skills, resources and patient barriers. Most doctors (85%) and 40% of nurse respondents reported receiving no training for assessing and managing psychological needs. CONCLUSIONS: Psychological well-being should be routinely assessed, and person-centred support should be offered regularly throughout the haematological cancer journey. Greater provision of healthcare professional training in this area and better integration of psychological support services into the patient care pathway are required.


Assuntos
Neoplasias Hematológicas , Recidiva Local de Neoplasia , Humanos , Aconselhamento , Neoplasias Hematológicas/terapia , Inglaterra , Pessoal de Saúde
17.
Int J Nurs Stud Adv ; 5: 100146, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38746594

RESUMO

Introduction: High-quality pre-registration student nurse training and development is integral to developing a sustainable and competent global nursing workforce. Internationally, student nurse recruitment rates have increased since the onset of the COVID-19 pandemic; however, attrition rates for student nurses are high. During the pandemic, many student nurses considered leaving the programme due to academic concerns, feeling overwhelmed, and doubting their clinical skills. Little was known about the extent to which nursing education prior to COVID-19 had prepared students for their role in managing the healthcare crisis or the impact on their resilience. Thus, this study aimed to explore how the COVID-19 pandemic impacted on the resilience levels of student nurses across the United Kingdom. Methods: Data were collected as part of a multi-site qualitative study named 'COV-ED Nurse' and involved pre-placement surveys, placement diaries, and post-placement interviews with nursing students. Student nurse participants were recruited from across the United Kingdom, from all years of study, and from all four nursing branches: children, adult, mental health, and learning disabilities. Participants were asked to complete a pre-placement survey that collected demographic details and information about their placement expectations. They were also asked to record a weekly audio-visual or written diary to describe their placement experiences, and, on completion of their placements, students were interviewed to explore their experiences of this time. Data were thematically analysed using the Framework Approach. Ethical approvals were obtained. Results: Two hundred and sixteen students took part in the wider study. The current study involved a subset of 59 students' data. Four main themes were identified: 'coping with increased levels of acuity', 'perceived risks of the pandemic', 'resilience when facing uncertainty and isolation', and 'the importance of coping mechanisms and support structures.' Discussion: From this study, we have generated insights that can be applied to nursing research, education, policy, and practice and identified the wide-ranging impact that the COVID-19 pandemic had on student nurses and their abilities to remain resilient in an unstable environment. The value of communication and support networks from a wide range of sources was highlighted as key to navigating many uncertainties. In addition, the extent to which students were able to navigate their personal and professional roles and identities influenced their ability to cope with and continue along their training pathways.

18.
Breast ; 70: 32-40, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37300986

RESUMO

BACKGROUND: Breast cancer is the most common cancer in women worldwide. Approximately 80% of breast cancers are oestrogen receptor positive (ER+). Patients treated surgically are usually recommended adjuvant endocrine therapy (AET) for 5-10 years. AET significantly reduces recurrence, but up to 50% of women do not take it as prescribed. OBJECTIVE: To co-design and develop an intervention to support AET adherence and improve health-related quality-of-life (QoL) in women with breast cancer. METHODS: Design and development of the HT&Me intervention took a person-based approach and was guided by the Medical Research Council framework for complex interventions, based on evidence and underpinned by theory. Literature reviews, behavioural analysis, and extensive key stakeholder involvement informed 'guiding principles' and the intervention logic model. Using co-design principles, a prototype intervention was developed and refined. RESULTS: The blended tailored HT&Me intervention supports women to self-manage their AET. It comprises initial and follow-up consultations with a trained nurse, supported with an animation video, a web-app and ongoing motivational 'nudge' messages. It addresses perceptual (e.g. doubts about necessity, treatment concerns) and practical (e.g. forgetting) barriers to adherence and provides information, support and behaviour change techniques to improve QoL. Iterative patient feedback maximised feasibility, acceptability, and likelihood of maintaining adherence; health professional feedback maximised likelihood of scalability. CONCLUSIONS: HT&Me has been systematically and rigorously developed to promote AET adherence and improve QoL, and is complemented with a logic model documenting hypothesized mechanisms of action. An ongoing feasibility trial will inform a future randomised control trial of effectiveness and cost-effectiveness.


Assuntos
Neoplasias da Mama , Humanos , Feminino , Neoplasias da Mama/tratamento farmacológico , Qualidade de Vida , Adesão à Medicação , Quimioterapia Adjuvante
19.
Worldviews Evid Based Nurs ; 9(4): 243-55, 2012 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-22698274

RESUMO

BACKGROUND: The concept of family-centred care in neonatal practice has become increasingly recognised internationally. The underlying philosophy puts parents and the family at the centre of health care and promotes "individualised, flexible care." AIMS: To develop the first international model of family-centred care based on strong parental collaboration in the synthesis of robust research evidence to generate the philosophy, principles, model, and indicators for implementation. METHODS AND SYNTHESIS: Seven key steps were followed to develop the POPPY model of care collaboratively with parents. Step 1 drew on the POPPY systematic review to identify effective interventions. Step 2 drew on the POPPY qualitative study to identify good parent experiences. Step 3 identified the philosophy and principles of the POPPY model of care. Step 4 identified the key stages of the POPPY model of care. Step 5 populated the POPPY model of care with data from steps 1 and 2. Step 6 developed the indicators of family-centred care; and Step 7 undertook some initial testing with parents and practitioners. RESULTS: Seven key stages of the parents' journey through their neonatal unit experience were identified and formed the architecture of the POPPY model of care. These include: before admission to the unit, admission, early days, growing and developing, transfers between units and between levels of care, preparing for discharge, and transition to home and at home. A philosophy, a set of principles to underpin the model, and a set of indicators to guide implementation in neonatal units were developed. CONCLUSION: The POPPY model of family-centred care provides the first robust, collaboratively developed, parent-centred model, which can be implemented to deliver high quality care to parents of preterm infants. IMPLICATIONS: Implementing the POPPY model could help neonatal units to develop parent-focused services which better meet parents' needs for information, communication and support, key elements of family-centred care.


Assuntos
Enfermagem Baseada em Evidências/métodos , Enfermagem Familiar/métodos , Recém-Nascido Prematuro , Modelos de Enfermagem , Enfermagem Neonatal/métodos , Adulto , Comunicação , Comportamento Cooperativo , Enfermagem Baseada em Evidências/normas , Enfermagem Familiar/normas , Feminino , Humanos , Recém-Nascido , Masculino , Enfermagem Neonatal/normas , Pesquisa Metodológica em Enfermagem , Pais
20.
J Cancer Policy ; 32: 100333, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35560264

RESUMO

BACKGROUND: South Asians make up the largest ethnic minority group in England and Wales. Yet this group is underrepresented in some programmes to promote health, such as cancer screening. A challenge to addressing such health disparities is the difficulty of recruiting South Asian communities to health research. Effective recruitment requires the development of participants' knowledge about research and their trust. Researchers also need to increase their cultural understanding and to think about how they will communicate information despite language barriers. This article describes the use of an organogram, informed by social network analysis, to identify the community contacts likely to encourage participation of South Asian adults (aged 50-75 years) in interviews to identify the facilitators of home bowel cancer screening. METHODS: We developed an organogram which represented the directional relationships between organizations and key informants against the level of recruitment success to visualize where networking engaged participants. Primary data were recruitment records (February 2019-March 2020). RESULTS: The majority of participants were recruited from faith centres. The topic of bowel cancer was a barrier for some, but recruitment was more successful with the advocacy of leaders within the South Asian communities. Visualizing community networks helped the research team to understand where to concentrate time and resources for recruitment. CONCLUSIONS: The organizational chart was easy to maintain and demonstrated useful patterns in recruitment successes. POLICY SUMMARY: An organogram can provide a practical tool to identify the best strategies and community contacts to engage South Asian participants in studies to inform policy on health promotion activities such as cancer screening.


Assuntos
Neoplasias Colorretais , Detecção Precoce de Câncer , Adulto , Povo Asiático , Neoplasias Colorretais/diagnóstico , Redes Comunitárias , Etnicidade , Promoção da Saúde , Humanos , Grupos Minoritários , Seleção de Pacientes
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