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1.
J Med Internet Res ; 26: e49440, 2024 Mar 15.
Artículo en Inglés | MEDLINE | ID: mdl-38488858

RESUMEN

BACKGROUND: Pediatric stroke is relatively rare and underresearched, and there is little awareness of its occurrence in wider society. There is a paucity of literature on the effectiveness of interventions to improve rehabilitation and the services available to survivors. Access to online health communities through the internet may be a means of support for patients with pediatric stroke and their families during recovery; however, little research has been done in this area. OBJECTIVE: This study aims to identify the types of social support provided by an online peer support group to survivors of pediatric stroke and their families. METHODS: This was a qualitative thematic analysis of posts from a pediatric stroke population on a UK online stroke community active between 2004 and 2011. The population was split into 2 groups based on whether stroke survivors were aged ≤18 years or aged >18 years at the time of posting. The posts were read by 2 authors who used the adapted Social Support Behavior Code to analyze the types of social support exchanged. RESULTS: A total of 52 participants who experienced a pediatric stroke were identified, who posted a total of 425 messages to the community. About 41 survivors were aged ≤18 years at the time of posting and were written about by others (31/35 were mothers), while 11 were aged >18 years and were writing about themselves. Survivors and their families joined together in discussion threads. Support was offered and received by all participants, regardless of age. Of all 425 posts, 193 (45.4%) contained at least 1 instance of social support. All 5 types of social support were identified: informational, emotional, network, esteem support, and tangible aid. Informational and emotional support were most commonly exchanged. Emotional support was offered more often than informational support among participants aged ≤18 years at the time of posting; this finding was reversed in the group aged >18 years. Network support and esteem support were less commonly exchanged. Notably, the access subcategory of network support was not exchanged with the community. Tangible aid was the least commonly offered type of support. The exchanged social support provided insight into rehabilitation interventions and the unmet needs of pediatric stroke survivors. CONCLUSIONS: We found evidence of engagement of childhood stroke survivors and their families in an online stroke community, with peer support being exchanged between both long- and short-term survivors of pediatric stroke. Engagement of long-term survivors of pediatric stroke through the online community was key, as they were able to offer informational support from lived experience. Further interventional research is needed to assess health and rehabilitation outcomes from engagement with online support groups. Research is also needed to ensure safe, nurturing online communities.


Asunto(s)
Apoyo Social , Accidente Cerebrovascular , Femenino , Humanos , Niño , Grupos de Autoayuda , Accidente Cerebrovascular/terapia , Sobrevivientes , Red Social , Internet
2.
Front Digit Health ; 6: 1138530, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38357638

RESUMEN

Background: Amyotrophic Lateral Sclerosis (ALS) significantly impacts the lives of people with the diagnosis and their families. A supportive social environment is important for people with ALS to adopt effective coping strategies and health behaviours, and reduce depressive symptoms. Peer support can provide a supportive social environment and can happen in-person and online. Advantages of online peer support are that people can engage from their own home, at their own time and pace, and that it offers a variety of different platforms and modes of communication. Objectives: To (1) explore the benefits and challenges of online peer support for people with ALS, and (2) identify successful elements of online peer support for people with ALS. Methods: The method selected for this systematic review was a narrative synthesis. Six databases were systematically searched in April 2020 for articles published between 1989 and 2020. The search was updated in June 2022. The quality of the included studies was assessed with the Critical Appraisal Skills Programme qualitative research checklist. Results: 10,987 unique articles were identified through the systematic database search. Of those, 9 were included in this review. One of the main benefits of online peer support was that people could communicate using text rather than needing verbal communication, which can be challenging for some with ALS. Successful elements included using profile pages and graphics to identify others with similar or relevant experiences. Challenges included ALS symptoms which could make it difficult to use technological devices. Conclusions: Peer support can provide a non-judgmental and supportive environment for people with ALS, in which they can exchange experiences and emotional support, which can help people in developing adaptive coping strategies. However, ALS symptoms may make it more difficult for people to use technological devices and engage in online peer support. More research is needed to identify what kind of specific barriers people with ALS experience, and how these could be overcome.

3.
Medicina (Kaunas) ; 59(12)2023 Dec 11.
Artículo en Inglés | MEDLINE | ID: mdl-38138249

RESUMEN

Background and Objectives: Post-Stroke Fatigue (PSF) is a complex, multidimensional, debilitating condition that affects almost half of all stroke survivors. This study explored the perceptions of physiatrists, physiotherapists, and occupational therapists about PSF and their experiences in managing patients with PSF in Saudi Arabia. Materials and Methods: Qualitative semi-structured interviews were conducted with participants from three different groups: eight physiotherapists (PTs), eight occupational therapists (OTs), and eight physiatrists (DRs). Using purposive sampling, participants with at least one year of experience in the field of PSF management were invited to take part. The data were analysed using inductive thematic analysis. Results: Twenty-four health care participants (eight PTs, eight OTs, eight DRs) were recruited. Five overarching themes encompassing various subthemes and sub-subthemes were generated: 'knowledge about post-stroke fatigue', 'diagnosing post-stroke fatigue', 'treatment approach', 'lack of awareness about post-stroke fatigue', and 'domains to improve'. The data indicated that participants used various strategies to manage PSF, including dietary changes, sleep hygiene, exercise, and energy conservation. Conclusions: Participants acknowledged that they lacked PSF-related management skills, despite possessing adequate knowledge about the management of stroke. Their openness to participating in activities that would improve their ability to diagnose and manage PSF was particularly striking.


Asunto(s)
Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular , Humanos , Accidente Cerebrovascular/complicaciones , Investigación Cualitativa , Fatiga/etiología , Proyectos de Investigación , Atención a la Salud , Rehabilitación de Accidente Cerebrovascular/métodos
4.
J Med Internet Res ; 25: e44886, 2023 Sep 27.
Artículo en Inglés | MEDLINE | ID: mdl-37756051

RESUMEN

Promoting online peer support beyond the informal sector to statutory health services requires ethical considerations and evidence-based knowledge about its impact on patients, health care professionals, and the wider health care system. Evidence on the effectiveness of digital interventions in primary care is sparse, and definitive guidance is lacking on the ethical concerns arising from the use of social media as a means for health-related interventions and research. Existing literature examining ethical issues with digital interventions in health care mainly focuses on apps, electronic health records, wearables, and telephone or video consultations, without necessarily covering digital social interventions, and does not always account for primary care settings specifically. Here we address the ethical and information governance aspects of undertaking research on the promotion of online peer support to patients by primary care clinicians, related to medical and public health ethics.

5.
BJGP Open ; 7(4)2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37591553

RESUMEN

BACKGROUND: Cerebral palsy (CP) is one of the most common neurological disorders in children and results in lifelong physical impairments. Adults with CP have approximately the same life expectancy as their non-disabled peers, so helping them to stay healthy throughout the life course will have long-term cost benefits via reductions in hospital admissions, long-term care, and unemployment rates. AIM: To explore how adults with CP experience ageing. DESIGN & SETTING: National online survey given to adults with CP in the UK. METHOD: The participants were adults with CP. Items for the online survey were taken from existing self-report measures, with additional items developed for the survey. Several domains of functioning were assessed including mobility, dexterity, fatigue, pain, speech, mental health, swallowing and health maintenance/self-care as well as healthcare usage. Data were analysed using χ2 to examine the relationships between the demographic variables and the survey responses. RESULTS: The survey was completed by 395 participants, of whom 74.2% were female and approximately 59.3% aged <45 years. Responders reported having problems with mobility, pain, and fatigue with older participants reporting higher levels of pain and more mobility problems, although the correlations were fairly small. Healthcare usage was surprisingly low. CONCLUSION: The study found that age was associated with a decline in mobility and a higher level of pain, although the relationships were weak. It is possible that the low healthcare usage among the responders is owing to services not being available to respond to their needs.

6.
BMJ Open ; 13(7): e073503, 2023 07 11.
Artículo en Inglés | MEDLINE | ID: mdl-37433727

RESUMEN

INTRODUCTION: In the UK, approximately 4.3 million adults have asthma, with one-third experiencing poor asthma control, affecting their quality of life, and increasing their healthcare use. Interventions promoting emotional/behavioural self-management can improve asthma control and reduce comorbidities and mortality. Integration of online peer support into primary care services to foster self-management is a novel strategy. We aim to co-design and evaluate an intervention for primary care clinicians to promote engagement with an asthma online health community (OHC). Our protocol describes a 'survey leading to a trial' design as part of a mixed-methods, non-randomised feasibility study to test the feasibility and acceptability of the intervention. METHODS AND ANALYSIS: Adults on the asthma registers of six London general practices (~3000 patients) will be invited to an online survey, via text messages. The survey will collect data on attitudes towards seeking online peer support, asthma control, anxiety, depression, quality of life, information on the network of people providing support with asthma and demographics. Regression analyses of the survey data will identify correlates/predictors of attitudes/receptiveness towards online peer support. Patients with troublesome asthma, who (in the survey) expressed interest in online peer support, will be invited to receive the intervention, aiming to reach a recruitment target of 50 patients. Intervention will involve a one-off, face-to-face consultation with a practice clinician to introduce online peer support, sign patients up to an established asthma OHC, and encourage OHC engagement. Outcome measures will be collected at baseline and 3 months post intervention and analysed with primary care and OHC engagement data. Recruitment, intervention uptake, retention, collection of outcomes, and OHC engagement will be assessed. Interviews with clinicians and patients will explore experiences of the intervention. ETHICS AND DISSEMINATION: Ethical approval was obtained from a National Health Service Research Ethics Committee (reference: 22/NE/0182). Written consent will be obtained before intervention receipt and interview participation. Findings will be shared via dissemination to general practices, conference presentations and peer-reviewed publications. TRIAL REGISTRATION NUMBER: NCT05829265.


Asunto(s)
Asma , Calidad de Vida , Humanos , Adulto , Estudios de Factibilidad , Medicina Estatal , Asma/terapia , Atención Primaria de Salud
7.
BJGP Open ; 7(2)2023 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-36927724

RESUMEN

BACKGROUND: Parents of children with eczema are increasingly turning to online parenting forums for advice about how to manage it. Little is known about how parents make sense of advice about eczema treatments in online forums, and how it affects their management of childhood eczema. AIM: To explore how parents of children with eczema make sense of and act on advice about eczema treatments exchanged in online parenting forums. DESIGN & SETTING: Qualitative interviews with parents of children with eczema from the UK. METHOD: Fifteen parents were recruited through online advertisements and snowball sampling. Semi-structured interviews were carried out face to face or by telephone, and analysed inductively using reflexive thematic analysis. RESULTS: When seeking advice from online parenting forums about eczema treatments, parents described appraising the credibility of advice and considering the potential suitability of treatments that were recommended in the forum. Parents proceeded to make sense of online advice through either reading advice and not engaging in online discussions, or actively engaging in online discussions to direct topics and seek most relevant advice. Parents discussed advice received online in subsequent consultations with their GP and requested prescriptions of recommended treatments. Some parents described trying new treatments without consulting their GP. CONCLUSION: Understanding how parents appraise, make sense of, and act on online advice could support healthcare professionals to disseminate advice appropriately, ask additional questions, and signpost parents to reliable online resources.

8.
Age Ageing ; 52(1)2023 01 08.
Artículo en Inglés | MEDLINE | ID: mdl-36649029

RESUMEN

BACKGROUND: Despite the proliferation of online support communities, little is known about how people with dementia engage with them. AIM: The aim of this study was to explore the content of messages exchanged between members of the asynchronous Talking Point online discussion forum. METHOD: Using the sub-forum 'I have dementia', 100 conversation threads were randomly selected yielding 863 individual messages for analysis. Our data set was subjected to reflexive thematic analysis. RESULTS: Three themes were generated: journeying through dementia, reciprocal peer support and therapeutic creativity. The findings suggest that individuals used the forum to share their experiences of obtaining and adjusting to a dementia diagnosis, their current symptoms and how they addressed the challenges of daily living as well as the impacts on mood, confidence and connectedness. The forum was viewed as a safe space to reflect on the future and what it might hold for them and loved ones. Throughout these discussions, users supported each other, particularly in relation to the emotional impact of diagnosis and shared experiential information and advice, with referrals to external sources of support commonplace. Discussion around the role of therapeutic creativity was evident and its role as a coping mechanism described. Through engagement, a sense of community and companionship was evident and new members welcomed, supported and encouraged to join in. DISCUSSION: The forum appears to be filling an important gap in post-diagnostic support provision, particularly for those with rare forms of dementia. Clinicians, support workers and organisations could consider recommending online support forums to people with dementia.


Asunto(s)
Demencia , Relaciones Interpersonales , Humanos , Comunicación , Emociones , Lenguaje , Demencia/diagnóstico , Demencia/terapia , Internet
9.
Int J MS Care ; 24(6): 252-259, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36545647

RESUMEN

BACKGROUND: People with multiple sclerosis often experience depression and anxiety, negatively affecting their quality of life, especially their social life. Peer support, whether in person or online, could improve social connection and coping. Online peer support allows people to engage from their home at a time that suits them. We sought to explore the benefits and challenges of online peer support and to identify successful elements of online peer support for people with multiple sclerosis. METHODS: Using the narrative synthesis method, 6 databases were searched in April 2020 for articles published between 1989 and 2020; the search was updated in May 2022. The quality of the included studies was assessed using the Critical Appraisal Skills Programme qualitative research checklist and the Downs and Black checklist. RESULTS: Of 10,987 unique articles identified through the database search, 11 were included. Benefits of online peer support included sharing information and experiences and emotional support. Successful elements included having a dedicated space to save information and the convenience of online peer support. Challenges included verification of information and the lack of nonverbal communication. CONCLUSIONS: Online peer support can help those unable to access in-person support groups and can reduce the risk of social isolation. However, multiple sclerosis symptoms may make it difficult to use technological devices. Research is needed to further explore potential barriers to online peer support.

10.
J Med Internet Res ; 24(10): e34403, 2022 10 04.
Artículo en Inglés | MEDLINE | ID: mdl-36194454

RESUMEN

BACKGROUND: Online support communities have become an accessible way of gaining social, emotional, and informational support from peers and may be particularly useful for individuals with chronic conditions. To date, there have been few studies exploring the online support available for tic disorders, such as Tourette syndrome. An exploratory study looking at users' experiences with using online support communities for tic disorders suggested that members used such communities to share experiences, information, and strategies for tic management. OBJECTIVE: To build on these preliminary findings, this study examined the provision of social support in an online community for Tourette syndrome. METHODS: Data were collected from one publicly available online support community for Tourette syndrome and tics, from its inception to December 2019, by randomly selecting 10% of posts and their corresponding comments from each year for analysis. This resulted in 510 unique posts and 3802 comments posted from 1270 unique usernames. The data were analyzed using inductive thematic analysis. RESULTS: The findings of this study suggest that users utilized the online community as a multifaceted virtual place where they could share and ask for information about tics, unload and share their feelings arising from living with Tourette syndrome, find people facing similar situations and experiences, and freely share the realities of living with Tourette syndrome. CONCLUSIONS: The results complement the findings from a preliminary study and suggest that online support communities have a potentially valuable role as a mechanism for sharing and gaining information on illness experiences from similar peers experiencing tics and can promote self-management of tics. Limitations and recommendations for future research are discussed.


Asunto(s)
Trastornos de Tic , Tics , Síndrome de Tourette , Humanos , Grupo Paritario , Apoyo Social , Trastornos de Tic/psicología , Trastornos de Tic/terapia , Tics/psicología , Tics/terapia , Síndrome de Tourette/psicología , Síndrome de Tourette/terapia
11.
JMIR Aging ; 5(3): e35425, 2022 Jul 27.
Artículo en Inglés | MEDLINE | ID: mdl-35896025

RESUMEN

BACKGROUND: Parkinson disease (PD) significantly impacts the lives of people with the diagnosis and their families. In addition to the physical symptoms, living with PD also has an emotional impact. This can result in withdrawal from social roles, increasing the risk for social isolation and loneliness. Peer support is a way to stay socially connected, share experiences, and learn new coping skills. Peer support can be provided both in person and on the internet. Some of the advantages of online peer support are that it overcomes geographical barriers and provides a form of anonymity; moreover, support can be readily available when needed. However, the psychosocial impact of PD is still underresearched, and there is no systematic synthesis of online peer support for people with PD. OBJECTIVE: This review aims to explore the benefits and challenges of online peer support and identify successful elements of online peer support for people with PD. METHODS: The method selected for this systematic review is narrative synthesis. A total of 6 databases were systematically searched in April 2020 for articles published between 1989 and 2020. The quality of the included studies was assessed using the Critical Appraisal Skills Programme qualitative research checklist and the Downs and Black quality checklist. RESULTS: A total of 10,987 unique articles were identified through a systematic database search. Of these 10,987 articles, 8 (0.07%) were included in this review. Of the 8 studies, 5 (63%) were of good or high quality, 2 (25%) were of medium or fair quality, and 1 (13%) study was of poor quality. Web-based platforms included discussion forums, a web-based virtual world, and Facebook groups. Most papers reported on text-based communication. The included studies reported on sharing social support and personal experiences. Successful elements included increasing similarity between members and offering the opportunity to directly ask questions to a physician. Challenges included members leaving without a warning and PD symptoms hindering the use of technology. CONCLUSIONS: Peer support can improve social support and help people with PD in living meaningful and satisfying lives. Peer support is unique and cannot be replaced by family members, friends, or health care professionals. Online peer support can be a solution for those who do not have access to an in-person support group or whose PD symptoms restrict them from travelling. However, research on the personal experiences of those who engage in online peer support and potential barriers in accessing it remains limited. Future research could use qualitative methods to explore these fields further.

12.
J Med Internet Res ; 24(7): e27648, 2022 07 26.
Artículo en Inglés | MEDLINE | ID: mdl-35881456

RESUMEN

BACKGROUND: Online support groups provide opportunities for individuals affected by HIV and AIDS to seek information, advice, and support from peers. However, whether and how engagement with online support groups helps individuals affected by HIV and AIDS remains unclear, as does the nature of the evidence on this topic. OBJECTIVE: This scoping review sought to explore whether engagement with HIV and AIDS-related online support groups benefits members in terms of psychosocial well-being and illness management, whether members experienced any negative aspects of these groups, and what types of social support are exchanged within HIV and AIDS-related online support groups. METHODS: A scoping review of English-language articles (including both qualitative and quantitative studies) was undertaken using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. The databases searched included MEDLINE, PubMed, EMBASE, CINAHL, PsycINFO, CENTRAL (Cochrane Register of Controlled Trials), and Scopus. Key findings were synthesized using a narrative and thematic approach. RESULTS: A total of 22 papers met the inclusion criteria from an initial pool of 3332 abstracts. These papers included 23% (5/22) quantitative studies, 9% (2/22) mixed methods studies, and 68% (15/22) qualitative studies published between 2007 and 2019. Cross-sectional evidence suggests that engagement with HIV and AIDS-related online support groups is empowering for members and may lead to a range of psychosocial benefits. Furthermore, qualitative evidence suggests that these groups provide an opportunity to connect with similar people and share experiences. This can help improve self-worth, reduce stigma, facilitate improved illness management, and gain greater confidence when interacting with health professionals. However, online support groups are not without their limitations as qualitative evidence suggests that users may encounter examples of interpersonal conflict between members as well as be exposed to challenging content. Finally, HIV and AIDS-related online support groups are avenues through which individuals can solicit support, most commonly informational or emotional. CONCLUSIONS: HIV and AIDS-related online support groups may have some benefits for members, particularly in terms of providing social support. There is a need for a systematic review of this literature that includes an assessment of the methodological quality of the available evidence.


Asunto(s)
Infecciones por VIH , Grupos de Autoayuda , Estudios Transversales , Infecciones por VIH/terapia , Humanos , Grupo Paritario , Apoyo Social
13.
Psychol Belg ; 62(1): 152-165, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35510131

RESUMEN

We examined perceived self-other differences (self-uniqueness) in appraisals of one's risk of an infectious disease (COVID-19), one's adherence to behavioural precautionary measures against the disease, and the impact of these measures on one's life. We also examined the relationship of self-uniqueness with information seeking and trust in sources of information about the disease. We administered an online survey to a community sample (N = 8696) of Dutch-speaking individuals, mainly in Belgium and The Netherlands, during the first lockdown (late April-Mid June 2020). As a group, participants reported that they were less likely to get infected or infect others or to suffer severe outcomes than average (unrealistic optimism) and that they adhered better than average to behavioural precautionary measures (illusory superiority). Except for participants below 25, who reported that they were affected more than average by these measures (egocentric impact bias), participants also generally reported that they were less affected than average (allocentric impact bias). Individual differences in self-uniqueness were associated with differences in the number of information sources being used and trust on these sources. Higher comparative optimism for infection, self-superiority, and allocentric impact perception were associated with information being sought from fewer sources; higher self-superiority and egocentric impact perception were associated with lower trust. We discuss implications for health communication.

14.
Physiother Theory Pract ; 38(7): 890-896, 2022 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-32746671

RESUMEN

BACKGROUND: Chronic low back pain (CLBP) is a complex biopsychosocial problem with financial implications for society. Most LBP is categorized as nonspecific CLBP (NS-CLBP); magnetic resonance imaging (MRI) is increasingly used in the investigation of LBP but has a high false-positive rate for NS-CLBP. PURPOSE: To explore the psychosocial factors associated with diagnosing NS-CLBP by MRI in Saudi Arabia. METHODS: Using a qualitative design, 11 patients with CLBP without a clear medical diagnosis who had received an MRI scan were interviewed using a semi-structured technique, and transcripts were analyzed using framework analysis. RESULTS: Four themes of relevance to the psychosocial consequences of using MRI to diagnose CLBP were identified: 1) impact on social participation after MRI diagnosis; 2) psychological impact of MRI diagnosis; 3) conflicting advice; and 4) patient education. Although some patients expressed a sense of relief following the identification of an objective explanation of their symptoms by MRI, a number of negative consequences were also identified. In particular, fear-avoidance behavior and anxiety were apparent. CONCLUSION: The use of MRI scanning in the diagnosis of LBP may lead to psychosocial factors influencing participation in physical and social daily activities.


Asunto(s)
Dolor de la Región Lumbar , Miedo/psicología , Humanos , Dolor de la Región Lumbar/diagnóstico por imagen , Dolor de la Región Lumbar/psicología , Dimensión del Dolor , Investigación Cualitativa
15.
JMIR Res Protoc ; 10(9): e31976, 2021 09 20.
Artículo en Inglés | MEDLINE | ID: mdl-34542420

RESUMEN

BACKGROUND: Cancer survivors frequently report a range of unmet psychological and supportive care needs; these often continue after treatment has finished and are predictive of psychological distress and poor health-related quality of life. Web-based interventions demonstrate good efficacy in addressing these concerns and are more accessible than face-to-face interventions. Finding My Way (FMW) is a web-based, psycho-educational, and cognitive behavioral therapy intervention for cancer survivors developed in Australia. Previous trials have demonstrated that FMW is acceptable, highly adhered to, and effective in reducing the impact of distress on quality of life while leading to cost savings through health resource use reduction. OBJECTIVE: This study aims to adapt the Australian FMW website for a UK cancer care context and then undertake a single-blinded, randomized controlled trial of FMW UK against a treatment-as-usual waitlist control. METHODS: To an extent, our trial design replicates the existing Australian randomized controlled trial of FMW. Following a comprehensive adaptation of the web resource, we will recruit 294 participants (147 per study arm) from across clinical sites in North West England and North Wales. Participants will have been diagnosed with cancer of any type in the last 6 months, have received anticancer treatment with curative intent, be aged ≥16 years, be proficient in English, and have access to the internet and an active email address. Participants will be identified and recruited through the National Institute for Health Research clinical research network. Measures of distress, quality of life, and health economic outcomes will be collected using a self-report web-based questionnaire at baseline, midtreatment, posttreatment, and both 3- and 6-month follow-up. Quantitative data will be analyzed using intention-to-treat mixed model repeated measures analysis. Embedded semistructured qualitative interviews will probe engagement with, and experiences of using, FMW UK and suggestions for future improvements. RESULTS: The website adaptation work was completed in January 2021. A panel of cancer survivors and health care professionals provided feedback on the test version of FMW UK. Feedback was positive overall, although minor updates were made to website navigation, inclusivity, terminology, and the wording of the Improving Communication and Sexuality and Intimacy content. Recruitment for the clinical trial commenced in April 2021. We aim to report on findings from mid-2023. CONCLUSIONS: Replication studies are an important aspect of the scientific process, particularly in psychological and clinical trial literature, especially in different geographical settings. Before replicating the FMW trial in the UK setting, content updating was required. If FMW UK now replicates Australian findings, we will have identified a novel and cost-effective method of psychosocial care delivery for cancer survivors in the United Kingdom. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN) 14317248; https://www.isrctn.com/ISRCTN14317248. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/31976.

16.
J Med Internet Res ; 23(9): e22312, 2021 09 16.
Artículo en Inglés | MEDLINE | ID: mdl-34528889

RESUMEN

BACKGROUND: In the era of potent antiretroviral therapy, a high level of condomless anal intercourse continues to drive increases in HIV incidence in recent years among men who have sex with men. Effective behavior change strategies for promoting HIV-preventive behaviors are warranted. Narrative persuasion is a novel health communication approach that has demonstrated its persuasive advantages in overcoming resistance to counterattitudinal messages. The efficacy of narrative persuasion in promoting health behavior changes has been well documented, but critical research gaps exist for its application to HIV prevention. OBJECTIVE: In this study, we aimed to (1) capitalize on narrative persuasion to design a web-based multisession intervention for reducing condomless anal intercourse among men who have sex with men in Hong Kong (the HeHe Talks Project) by following a systematic development process; and (2) describe the main components of the narrative intervention that potentially determine its persuasiveness. METHODS: Persuasive themes and subtopics related to reducing condomless anal intercourse were initially proposed based on epidemiological evidence. The biographic narrative interview method was used to elicit firsthand experiential stories from a maximum variation sample of local men who have sex with men with diverse backgrounds and experiences related to HIV prevention; different types of role models were established accordingly. Framework analysis was used to aggregate the original quotations from narrators into collective narratives under 6 intervention themes. A dedicated website was finally developed for intervention delivery. RESULTS: A series of video-based intervention messages in biographic narrative format (firsthand experiential stories shared by men who have sex with men) combined with topic-equivalent argumentative messages were produced and programmed into 6 intervention sessions. The 6-week intervention program can be automatically delivered and monitored online. CONCLUSIONS: We systematically created a web-based HIV prevention intervention derived from peer-generated stories. Strategies used to enhance the efficacy of the narrative intervention have been discussed within basic communication components. This paper describes the methods and experiences of the rigorous development of a narrative communication intervention for HIV prevention, which enables replication of the intervention in the future.


Asunto(s)
Infecciones por VIH , Intervención basada en la Internet , Minorías Sexuales y de Género , China , Infecciones por VIH/prevención & control , Homosexualidad Masculina , Humanos , Masculino , Comunicación Persuasiva , Conducta Sexual
18.
Am J Audiol ; 30(2): 241-254, 2021 Jun 14.
Artículo en Inglés | MEDLINE | ID: mdl-34038162

RESUMEN

Purpose The purpose of this study is to comprehensively describe the intervention planning process for the Tinnitus E-Programme 2.0, an Internet-based cognitive behavioral intervention for tinnitus. Method Theory-, evidence-, and person-based approaches to intervention development were used. In Phase 1, quantitative systematic reviews were used to identify potentially effective intervention techniques and design features. Primary mixed-methods research involving adults with tinnitus explored the acceptability of the first version of the intervention. In Phase 2, person-based guiding principles highlighted key intervention design objectives and features to address needs of the intervention's target group (identified in Phase 1) to maximize its acceptability, feasibility of delivery, and effectiveness. Theory-based "behavioral analysis" and "logic modeling" comprehensively described intervention content and potential mechanisms of action. From this planning work, a prototype intervention was developed. Results The intervention design objectives outlined in the guiding principles were to (a) normalize tinnitus, (b) support users to maintain a regular relaxation practice, (c) minimize the worsening of users' tinnitus sensation, and (d) ensure the intervention is accessible to those with hearing loss. Behavioral analysis and logic modeling identified intervention processes (e.g., illness perceptions, beliefs about consequences, skills, goals) and purported mediators (acceptance of tinnitus, negative thinking, use of the cognitive skills tools for managing negative thoughts, and practicing regular relaxation) hypothesized to facilitate reductions in tinnitus symptom severity. Conclusions The guiding principles highlight key design objectives and features to consider when developing interventions for tinnitus. The logic model offers hypothesized mechanisms of action that can be tested in future process analyses.


Asunto(s)
Terapia Cognitivo-Conductual , Intervención basada en la Internet , Acúfeno , Adulto , Cognición , Humanos , Acúfeno/terapia
19.
J Med Internet Res ; 23(4): e23487, 2021 04 23.
Artículo en Inglés | MEDLINE | ID: mdl-33890858

RESUMEN

BACKGROUND: Effective help for depression and anxiety reaches a small proportion of people who might benefit from it. The scale of the problem suggests the need for effective, safe web-based public health services delivered directly to the public. One model, the Big White Wall (BWW), offers peer support at low cost. As these interventions are delivered digitally, we tested whether a randomized controlled trial (RCT) intervention could also be fully delivered and evaluated digitally. OBJECTIVE: This study aims to determine the reach, feasibility, acceptability, baseline costs, and outcomes of a public health campaign for an automated RCT of the BWW, providing digital peer support and information, compared with a standard website used by the National Health Service Moodzone (MZ), to people with probable mild-to-moderate depression and anxiety disorder. The primary outcome was the change in self-rated well-being at 6 weeks, measured using the Warwick-Edinburgh Mental Well-Being Scale. METHODS: An 18-month campaign was conducted across Nottinghamshire, the United Kingdom (target population 914,000) to advertise the trial directly to the public through general marketing, web-based and social media sources, health services, other public services, and third-sector groups. The population reach of this campaign was examined by the number of people accessing the study website and self-registering to the study. A pragmatic, parallel-group, single-blind RCT was then conducted using a fully automated trial website in which eligible participants were randomized to receive either 6 months of access to BWW or signposted to MZ. Those eligible for participation were aged >16 years with probable mild-to-moderate depression or anxiety disorders. RESULTS: Of 6483 visitors to the study website, 1510 (23.29%) were eligible. Overall, 790 of 1510 (52.32%) visitors participated. Of 790 visitors, 397 (50.3%) were randomized to BWW and 393 (49.7%) to MZ. Their mean age was 38 (SD 13.8) years, 81.0% (640/790) were female, 93.4% (738/790) were White, and 47.4% (271/572) had no contact with health services in the previous 3 months. We estimated 3-month productivity losses of £1001.01 (95% CI 868.75-1133.27; US $1380.79; 95% CI 1198.35-1563.23) per person for those employed. Only 16.6% (131/790) participants completed the primary outcome assessment. There were no differences in the primary or secondary outcomes between the 2 groups. CONCLUSIONS: Most participants reached and those eligible for this trial of digital interventions were White women not in recent contact with health services and whose productivity losses represent a significant annual societal burden. A fully automated RCT recruiting directly from the public failed to recruit and retain sufficient participants to test the clinical effectiveness of this digital intervention, primarily because it did not personally engage participants and explain how these unfamiliar interventions might benefit them. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN) 12673428; https://www.isrctn.com/ISRCTN12673428. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/resprot.8061.


Asunto(s)
Depresión , Automanejo , Adulto , Ansiedad/terapia , Trastornos de Ansiedad/terapia , Depresión/terapia , Femenino , Humanos , Internet , Reino Unido
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