RESUMEN
PURPOSE: An ageing population and a global pandemic has placed greater demands on palliative care services. Numerous studies describe the patient experience in palliative care, however, few explore the healthcare professional's experience of caring in this setting. This study explored the emotional challenges faced by palliative care professionals working in adult hospice services in Ireland. DESIGN/METHODOLOGY/APPROACH: A narrative phenomenological approach was adopted, using interpretative phenomenological analysis to analyse results from five participants' semi-structured interviews. FINDINGS: The type of challenge experienced reflected the impact it had on the participant's emotional wellbeing. Challenges perceived as achievable contributed to high levels of emotional wellbeing. These challenges often offered the opportunity for skill development and elicited positive feelings. Challenges perceived as uncontrollable negatively impacted the professional's emotional wellbeing and increased their risk of burnout. Examples of this included the shift in service provision and professional expectations. The challenges palliative care professionals experience on a daily basis can negatively or positively impact their emotional wellbeing. CONCLUSION: Overall, this study highlighted challenges and their impacts experienced by palliative care professionals, illustrating key areas for improvement to prioritise staff wellbeing.
Asunto(s)
Personal de Salud , Humanos , Irlanda , Adulto , Masculino , Femenino , Personal de Salud/psicología , Agotamiento Profesional/psicología , Emociones , Hospitales para Enfermos Terminales , Persona de Mediana Edad , Investigación Cualitativa , Cuidados Paliativos al Final de la Vida/psicología , Cuidados Paliativos/psicología , Actitud del Personal de Salud , Entrevistas como AsuntoRESUMEN
PURPOSE: COB-MS is an eight-session, Cognitive Occupation-Based programme for people with both MS and cognitive difficulty - designed to enhance cognition and daily functioning, through a combination of goal-setting, cognitive strategy engagement, group activities, home-practice activities and one-on-one sessions. This research aims to investigate the acceptability of COB-MS from the perspective of people living with MS, as well as the occupational therapists who facilitated the programme. MATERIALS AND METHODS: Two content analyses were conducted on interview data from (n = 11) COB-MS participants and (n = 8) COB-MS facilitators. Thematic analysis was also conducted on the participant interview data. RESULTS: Through a, primary, content analysis, participants reported that the COB-MS provided both a positive experience and quality resources. Qualitative improvement and utilisation of their learning beyond completion of the intervention were also identified. Four themes were identified via, secondary, thematic analysis: (1) Group interaction within COB-MS was vital; (2) Online COB-MS had positive and negative effects on participation; (3) COB-MS as a provider of clarity; and (4) Using learned strategies after the completion of COB-MS. Recommendations for future administration are provided. CONCLUSIONS: Findings suggest COB-MS acceptability, as well as appropriateness and feasibility, indicative of progression to a definitive trial in future research. TRIAL REGISTRATION: ISRCTN: ISRCTN11462710. Registered on 9 September 2019.
Cognitive difficulties associated with multiple sclerosis (MS) impact on daily life activities and are considered invisible MS symptoms. This invisibility and the lack of acknowledgement of such symptoms often adds to the distress experienced by people with MS.Occupational therapists are well-placed to address the daily-life impacts of cognitive difficulties in MS.The COB-MS is an occupation-focused intervention that aims to enhance daily function.The intervention was found to be well-accepted well by people with MS and occupational therapists and can feasibly be delivered in clinical practice.
RESUMEN
We describe the management of a 39-year-old woman with intractable focal epilepsy whose condition deteriorated during pregnancy and who required emergency neurosurgery. A literature search did not identify any previous reports of epilepsy surgery in pregnancy. To our knowledge, this is the first time surgery was planned and executed in rapid order with a successful outcome, without obstetrical or surgical complications and seizure freedom achieved. The value of rapid communication between established women's health advanced nurse practitioner clinics, the multidisciplinary Epilepsy Surgery Group and specialist Obstetrical Epilepsy service is highlighted. A care cycle for pregnant women with refractory epilepsy is proposed.
RESUMEN
BACKGROUND: Cognitive difficulties experienced by people with multiple sclerosis (MS) impact on quality of life and daily functioning, from childcare and work to social and self-care activities. The Cognitive Occupation-Based programme for people with MS (COB-MS) was developed as a holistic, individualised cognitive rehabilitation intervention to address the wide-ranging symptoms and functional difficulties that present in MS, including the ability to maintain employment, social activities, home management and self-care. The aim of the research is to evaluate the feasibility and preliminary efficacy of COB-MS for people with MS. METHODS: Due to the impacts of COVID-19, trial activities that were planned for in-person delivery were completed remotely. One hundred and twenty people with MS will be assigned to participate in either the COB-MS programme or a treatment-as-usual, wait-list control group as part of this single-blind, cluster-randomised controlled feasibility and preliminary efficacy trial of the COB-MS programme. The COB-MS group will participate in an eight-session occupational-based cognitive rehabilitation programme over 9 weeks. The COB-MS intervention was planned for in-person delivery but was delivered online by occupational therapists to small groups of people with MS. The primary outcome measure is the Goal Attainment Scaling at 12 weeks. Participants will be assessed pre-intervention, post-intervention, 12 weeks post-intervention and 6 months post-intervention. Qualitative evaluations of participants' perspectives will also be examined as part of the feasibility study. Data, due to be collected in-person, was collected online or by post. The original study design, including the statistical analysis plan, remains unchanged despite the shift to a remote trial conduct. DISCUSSION: Results will provide recommendations for a future definitive trial of COB-MS, with respect to both feasibility and preliminary, clinical efficacy. TRIAL REGISTRATION: ISRCTN ISRCTN11462710 . Registered on 9 September 2019 and updated on 23 September 2020 to account for changes outlined here.
Asunto(s)
COVID-19 , Esclerosis Múltiple , Humanos , Esclerosis Múltiple/diagnóstico , Esclerosis Múltiple/terapia , Estudios de Factibilidad , Calidad de Vida , Método Simple Ciego , Cognición , Ocupaciones , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
Reliable remote cognitive testing could provide a safer assessment of cognitive impairment in multiple sclerosis (MS) during the COVID-19 pandemic and thereafter. Here we aimed to investigate the reliability and feasibility of administering Brief International Cognitive Assessment for MS (BICAMS) and the Trail-Making Test (TMT) to people with MS online. Between-group differences on BICAMS and the TMT were examined in a sample of 68 participants. Group 1 (N = 34) was tested in-person pre-pandemic. Group 2 was tested remotely. Within-group differences for in-person and virtual administrations were examined for Group 1. No significant differences between virtual and in-person administrations of the CVLT-II and SDMT were detected. BVMT-R scores were significantly higher for virtual administrations (M = 20.59, SD = 6.65) compared to in-person administrations (M = 16.35, SD = 6.05), possibly indicating inter-rater differences. Strong positive correlations were found for in-person and virtual scores within Group 1 on the CVLT-II (r = .84), SDMT (r = .85), TMT-A (r = .88), TMT-B (r = .76) and BVMT-R (r = .72). No significant differences between in-person and remote administrations of CVLT-II and SDMT in people living with MS were detected. Recommendations for future studies employing the TMT and BVMT-R online are provided.
Asunto(s)
COVID-19 , Disfunción Cognitiva , Esclerosis Múltiple , Humanos , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/psicología , Reproducibilidad de los Resultados , Pandemias , COVID-19/complicaciones , Disfunción Cognitiva/diagnóstico , Disfunción Cognitiva/etiología , Pruebas Neuropsicológicas , CogniciónRESUMEN
The current study-within-a-trial explored individuals' decisions to decline participation in research trialling a chronic illness-focused therapy (i.e. multiple sclerosis). Four themes were identified from seven semi-structured interviews with participation decliners and were confirmed by the host trial's Patient & Public Involvement (PPI) panel: acknowledgement of the value of research; 'fit' of the study; misinterpretation of participant information; and 'ignorance is bliss' - discussed in light of theory and research. This study-within-a-trial extends research on trial recruitment and participation decline; while also suggesting that PPI can be utilised in both a practical and impactful manner.
Asunto(s)
Esclerosis Múltiple , Solución de Problemas , Humanos , Esclerosis Múltiple/terapia , Participación del Paciente , Investigación CualitativaRESUMEN
Background: Despite its importance, recruiting a sufficient sample size for randomised controlled trials (RCTs) can pose a significant challenge, which has real-world impact on reliability of evidence, trial completion and ultimately, patient care. Technology has potential to enhance the recruitment process, but there is a lack of evidence regarding its current use and effectiveness. Consistent with findings from the PRioRiTy I study, the current research aims to explore the advantages and disadvantages to using technology during the recruitment process for RCTs. Methods: Semi-structured interviews (n=7) were conducted with researchers involved in RCT recruitment in Ireland. Subsequently, a Public & Patient Involvement (PPI) panel focus group (n=3) was conducted to add further depth to these findings. The data were qualitatively analysed through 'Reflexive Thematic Analysis' to extract prominent themes. Results: A superordinate theme arose: 'Tech is just a medium so that you can reach more people', along with two themes, which were corroborated by the PPI focus group: 'Technology is used if and when the benefits outweigh the costs' and 'Success of recruitment through technology depends on the nature of the study.' Conclusions: This study provided a deeper understanding of the factors which influence researchers to employ technology in recruitment for RCTs. Implications suggest that future researchers should aim to adapt their recruitment approaches to meet digital tool preferences of their target cohort; and engage with patient groups in the community to allow networking opportunities for future studies. This research may contribute towards maximising efficiency in RCT recruitment.
RESUMEN
Background: A recent survey of 109 healthcare professionals explored how UK healthcare professionals typically assess and treat multiple sclerosis (MS)-related cognitive impairment. Little is currently known about what constitutes usual care for cognitive impairment and psychosocial care for people with MS in Ireland. Aim: The aim of the current research was to survey healthcare professionals (HCPs) who work with people with MS, to understand current assessment and management of cognition and psychosocial care in people with MS in the Republic of Ireland. Methods: A cross-sectional survey design was used. Data were collected online through Microsoft forms and through postal responses. The original UK questionnaire was adapted, piloted, and distributed to Irish HCPs. Participants were qualified HCPs who work clinically with people with MS in the Republic of Ireland. Results: Ninety-eight HCPs completed the survey. Only 34% of those surveyed reported routine screening of cognition for people with MS within their services; approximately, 36% HCPs reported that they did not provide information or services in relation to cognition to people with MS and 39% reported not referring elsewhere when cognitive difficulties were suspected. Out of the 98 HCPs, 47% reported assessing mood difficulties as part of their services, with 14% unsure. In total, 70% of participants reported onward referral took place if mood difficulties were identified. The Montreal Cognitive Assessment was the most commonly administrated cognitive assessment. Cognitive intervention choices were found to be guided by clinical judgement in 75.5% of cases. Discussion. Despite the high importance placed on cognitive and psychosocial care, there is very little consistency in treatment and assessment across services for people with MS in Ireland.
Asunto(s)
Esclerosis Múltiple , Humanos , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/terapia , Estudios Transversales , Irlanda/epidemiología , Encuestas y Cuestionarios , CogniciónRESUMEN
Background and aim: The process of trial recruitment is vital, given its impact on resources, statistical power and the validity of findings. A participant information leaflet (PIL) is often the initial and primary source of information engaged by potential participants during recruitment. Research suggests that a variety of manipulations to a PIL can be made during its development to enhance understanding, readability and accessibility. In light of this, PIL-design led by Public and Patient Involvement (PPI) may also yield positive effects in this respect, as well as consent and retention. This study-within-a-trial (SWAT) compared the effects of a PPI-developed PIL with a standard, researcher-developed PIL on rates of consent, retention, decision certainty, understanding, readability, accessibility, likeability and decision to consent. Method: This SWAT used a double-blind, two-armed randomised design. The SWAT was conducted within a host trial of cognitive rehabilitation in multiple sclerosis. Results: A total of 234 people expressed interest in the trial, of which 94 were retained at 6-month follow up. Results revealed no effects on levels of consent and retention between the two PIL groups. Conclusions: These null effects provide interesting points of discussion and important implications for not only future research on PILs, but also for future research that involves recruitment to health-related interventions.
RESUMEN
Multiple Sclerosis (MS) is a neurological condition which usually manifests between the ages of 20-40 years. This is a critical period for developing relationships, particularly romantic relationships. People with MS can experience sexual dysfunction, limb weakness, fatigue, pain, reduced mood and bladder/bowel dysfunction; potentially affecting their ability to participate in many meaningful activities, including those associated with romantic relationships, dating or engaging in sexual intercourse. Dating or starting romantic relationships can be difficult for people with physical disabilities as they can experience stigma, negative societal attitudes and the fear of requiring care from potential partners. Dating experiences of people with progressive conditions like MS have not been explored in detail. The aim of this study was to develop a rich understanding of how living with MS interacts with/influences dating and developing romantic relationships. The study used a descriptive phenomenological design and a purposive sampling strategy. Colaizzi's descriptive phenomenological method was used to analyze the data (Colaizzi, 1978). Five females and two males, aged 23-51, participated in two online focus groups. Dating with a diagnosis of MS is a highly personal phenomenon, characterized by individual differences in values and experiences. Core to the phenomenon was personal decision-making about disclosure of the diagnosis and ongoing adaptation to the fluctuating nature of the condition with partners in new/developing relationships. The findings will help health professionals working with adults with MS understand this important aspect of their lives.
RESUMEN
BACKGROUND: Eligibility guidelines in research trials are necessary to minimise confounds and reduce bias in the interpretation of potential treatment effects. There is limited extant research investigating how being deemed ineligible for such trials might impact patients' perceptions of themselves and of research. Better understanding of the impact of patient ineligibility could enhance design and implementation of future research studies. METHODS: Eight semi-structured telephone interviews were conducted to explore the impact of ineligibility on self-perceptions; perceptions regarding the nature of research; and the likelihood of expressing interest in future research. Data were collected and analysed thematically through inductive, interpretive phenomenological analysis (IPA). RESULTS: Five themes emerged regarding the experience of being deemed ineligible: (1) Being deemed ineligible is emotion and reaction evoking; (2) 'Doing your bit': Helping others and increasing the value of research; (3) Communication of ineligibility; (4) Appreciation for those who express interest; and (5) Subsequent perceptions and attitudes towards research. CONCLUSIONS: The results suggest that being deemed ineligible can elicit negative emotional outcomes but is not likely to change perceptions of or attitudes towards research, possibly due to a desire to help similar others. Ineligibility can impact future participation in some cases, thus reducing the recruitment pool for subsequent research studies. Recommendations are provided to help minimise this risk. Advising of ineligibility in a personal way is recommended: with enhanced clarity regarding the reasoning behind the decision; providing opportunities to ask questions; and ensuring that appreciation for the patient's time and interest are communicated.
Asunto(s)
Comunicación , Emociones , Humanos , Probabilidad , Investigación CualitativaRESUMEN
BACKGROUND: The COVID-19 pandemic has likely had a negative impact on rehabilitation and quality of life (QoL) research in multiple sclerosis (MS). METHOD: We explored perceived barriers to research among 87 researchers, representing 18 countries, both prior to and since COVID-19. RESULTS: A Wilcoxon signed-rank test found that significantly more researchers reported experiencing barriers to research since the onset of the pandemic compared to pre-COVID-19 (p < .001), with 78% of respondents reporting at least some barriers since COVID-19. The most commonly-cited barriers related to participant access (n = 38) and interruptions/delays to projects (n = 19). Although no gender differences were found in the number of barriers reported, female respondents were more likely to cite time or competing demands as barriers to research. Females were also more likely to perceive being negatively impacted by the pandemic compared to other genders (p = .007). CONCLUSIONS: Implications for the future landscape of rehabilitation research in MS are discussed.
RESUMEN
In this Open Letter we present reflections from three different perspectives on the integration of public and patient involvement (PPI) in a research trial. We reflect on the experience of having a patient employed as a contract researcher, with no prior research experience, on a feasibility trial of cognitive rehabilitation in multiple sclerosis. This Open Letter is written by the PPI research team member with reflections from a researcher on the trial and the principle investigator. We will discuss some of the changes made and the impacts that have been resulted from of PPI input into the trial. We focus on PPI involvement in participant recruitment, the development of trial material, integration of PPI along the research cycle, and collaboration. We hope that this Open Letter will encourage principle investigators and groups to include PPI members as part of the research team and help patients and members of the public understand what the experience of PPI members is like.
RESUMEN
Seizures are a common presentation to emergency departments in homeless patients. Seizures and epilepsy are often poorly managed in homeless patients. In this retrospective study, conducted in a large urban university hospital; we compared the number emergency department presentations and associated head computed tomography studies in a cohort of 88 homeless patients with seizures to an age and gender-matched housed cohort of patients over a five-year period. We found that homeless patients had a significantly increased number of presentations to the emergency department and a significantly higher number of head computed tomography, with a resulting increase in radiation exposure.
Asunto(s)
Personas con Mala Vivienda , Servicio de Urgencia en Hospital , Humanos , Estudios Retrospectivos , Convulsiones/diagnóstico por imagen , Convulsiones/epidemiología , Tomografía Computarizada por Rayos XRESUMEN
BACKGROUND: We aimed to estimate the clinical effectiveness of Community Occupational Therapy for people with dementia and family carers-UK version (Community Occupational Therapy in Dementia-UK version [COTiD-UK]) relative to treatment as usual (TAU). We hypothesised that COTiD-UK would improve the ability of people with dementia to perform activities of daily living (ADL), and family carers' sense of competence, compared with TAU. METHODS AND FINDINGS: The study design was a multicentre, 2-arm, parallel-group, assessor-masked, individually randomised controlled trial (RCT) with internal pilot. It was conducted in 15 sites across England from September 2014 to January 2018. People with a diagnosis of mild to moderate dementia living in their own home were recruited in pairs with a family carer who provided domestic or personal support for at least 4 hours per week. Pairs were randomised to either receive COTiD-UK, which comprised 10 hours of occupational therapy delivered over 10 weeks in the person with dementia's home or TAU, which comprised the usual local service provision that may or may not include standard occupational therapy. The primary outcome was the Bristol Activities of Daily Living Scale (BADLS) score at 26 weeks. Secondary outcomes for the person with dementia included the following: the BADLS scores at 52 and 78 weeks, cognition, quality of life, and mood; and for the family carer: sense of competence and mood; plus the number of social contacts and leisure activities for both partners. Participants were analysed by treatment allocated. A total of 468 pairs were recruited: people with dementia ranged from 55 to 97 years with a mean age of 78.6 and family carers ranged from 29 to 94 with a mean of 69.1 years. Of the people with dementia, 74.8% were married and 19.2% lived alone. Of the family carers, 72.6% were spouses, and 22.2% were adult children. On randomisation, 249 pairs were assigned to COTiD-UK (62% people with dementia and 23% carers were male) and 219 to TAU (52% people with dementia and 32% carers were male). At the 26 weeks follow-up, data were available for 364 pairs (77.8%). The BADLS score at 26 weeks did not differ significantly between groups (adjusted mean difference estimate 0.35, 95% CI -0.81 to 1.51; p = 0.55). Secondary outcomes did not differ between the groups. In total, 91% of the activity-based goals set by the pairs taking part in the COTiD-UK intervention were fully or partially achieved by the final COTiD-UK session. Study limitations include the following: Intervention fidelity was moderate but varied across and within sites, and the reliance on primarily proxy data focused on measuring the level of functional or cognitive impairment which may not truly reflect the actual performance and views of the person living with dementia. CONCLUSIONS: Providing community occupational therapy as delivered in this study did not improve ADL performance, cognition, quality of life, or mood in people with dementia nor sense of competence or mood in family carers. Future research should consider measuring person-centred outcomes that are more meaningful and closely aligned to participants' priorities, such as goal achievement or the quantity and quality of activity engagement and participation. TRIAL REGISTRATION: Current Controlled Trials ISRCTN10748953.
Asunto(s)
Cuidadores/psicología , Demencia/rehabilitación , Familia/psicología , Servicios de Atención de Salud a Domicilio/organización & administración , Terapia Ocupacional/métodos , Actividades Cotidianas , Adulto , Anciano , Anciano de 80 o más Años , Inglaterra , Femenino , Humanos , Masculino , Persona de Mediana Edad , Evaluación de Resultado en la Atención de Salud , Calidad de Vida , Método Simple CiegoRESUMEN
BACKGROUND: Evidence for the effectiveness of occupational therapy for people with multiple sclerosis (MS) is yet to be established. AIMS/OBJECTIVES: To review the evidence regarding the effectiveness of occupational therapy interventions in improving outcomes for adults with MS. MATERIAL AND METHODS: We completed a scoping review of occupational therapy and multiple sclerosis following a scoping review methodological framework. Search included articles published up until June 2019. Studies were included if they were original research that included adults with MS published in English and assessed interventions delivered by occupational therapists. RESULTS: The search yielded 1646 results. Following screening and review of articles, thirty papers met the inclusion criteria and were included in the review. Studies were charted and discussed in the areas of: (1) fatigue management or energy conservation; (2) upper-limb rehabilitation; (3) occupation-focussed cognitive rehabilitation; and (4) other types of interventions. CONCLUSIONS: The quality of evidence that exists for occupational therapy with people with MS is mixed but there are studies that show that occupational therapy can improve occupational and other outcomes in this population.Significance: Patients have reported many benefits of occupational therapy but the evidence-base to support this needs to be developed.Implications for rehabilitationOccupational therapists are well-placed to intervene with multiple sclerosis symptoms.Evidence for the effectiveness of occupational therapy for people with multiple sclerosis is yet to be established.Fatigue management programmes delivered by occupational therapists are effective in reducing symptoms.Additional training in client-centred practice is no more effective than usual occupational therapy.
Asunto(s)
Actividades Cotidianas , Práctica Clínica Basada en la Evidencia/métodos , Esclerosis Múltiple/terapia , Terapia Ocupacional/métodos , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Resultado del TratamientoRESUMEN
Background: This protocol describes a double-blind, randomised non-inferiority study-within-a-trial (SWAT), comparing the effects of a patient-designed-and-informed participant information sheet with a standard, researcher-designed participant information sheet on recruitment, retention, decision certainty, participant information sheet understanding and likeability. The SWAT is part of a larger trial that aims to evaluate the feasibility and preliminary efficacy of a cognitive occupation-based programme for people with MS (COB-MS) on cognitive and daily functioning for people with multiple sclerosis. Methods: During the study, 120 people with multiple sclerosis will be randomly allocated to one of the two groups, where they will either receive a standard participant information sheet or a patient-designed participant information sheet. Recruitment and retention will be analysed, as well as decision certainty, likability and understanding. Discussion: Results will provide recommendations for recruitment, consent and retention for future trials, as well as shed some light on the factors influencing the understanding and likeability of a trial's participant information sheet. Recommendations will also be made regarding patient and public involvement in developing and/or aiding the development of participant information sheets. Registration: SWAT: Northern Ireland Hub for Trials Methodology Research SWAT Repository Store ( SWAT105). COB-MS trial: ISRCTN11462710.
RESUMEN
BACKGROUND: Cognitive difficulties experienced by people with multiple sclerosis (MS) impact their quality of life and daily functioning, from childcare and work, to social and self-care activities. Despite the high prevalence of cognitive difficulties seen in MS, there is a lack of developed programmes that target cognition, while also supporting patients by helping them to function well in everyday life. The Cognitive Occupation-Based programme for people with MS (COB-MS) was developed as a holistic, individualised cognitive rehabilitation intervention. It addresses the wide-ranging symptoms and functional difficulties that present in MS, including the ability to maintain employment, social activities, home management and self-care. The aim of the current research is to evaluate the feasibility and preliminary efficacy of COB-MS for people with MS. The focus is on feasibility outcomes as well as functioning associated with cognitive difficulty and secondary outcomes related to cognition, fatigue and quality of life. METHODS: One hundred and twenty people with MS will be assigned to participate in either the COB-MS programme or a treatment as usual, wait-list control group as part of this single-blind, cluster-randomised controlled feasibility and preliminary efficacy trial of the COB-MS programme. The COB-MS group will participate in an eight-session occupational-based cognitive rehabilitation programme over 9 weeks. The primary outcome measure is the goal attainment scaling at 12 weeks. Participants will be assessed pre-intervention, post-intervention and at 12 weeks post-intervention and 6 months post-intervention. Qualitative evaluations of participants' perspectives will also be examined as part of the feasibility study. DISCUSSION: Results will provide recommendations for a future definitive trial of COB-MS, with respect to both feasibility and preliminary, clinical efficacy. In the event that results indicate efficacy, study findings will suggest that COB-MS requires consideration as a means of enhancing cognitive and daily functioning in people living with MS. TRIAL REGISTRATION: ISRCTN: ISRCTN11462710. Registered on 9 September 2019.
Asunto(s)
Cognición , Terapia Cognitivo-Conductual/métodos , Esclerosis Múltiple/rehabilitación , Terapia Ocupacional/métodos , Actividades Cotidianas , Terapia Cognitivo-Conductual/economía , Análisis Costo-Beneficio , Estudios de Factibilidad , Humanos , Esclerosis Múltiple/economía , Esclerosis Múltiple/psicología , Terapia Ocupacional/economía , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto , Autocuidado , Método Simple Ciego , Resultado del TratamientoRESUMEN
INTRODUCTION: Cognitive difficulties have been reported to have the greatest effect on function and quality of life in people with multiple sclerosis, affecting 50-60% of people. To date, few interventions have been developed to treat cognitive issues in multiple sclerosis. Here we report on a Cognitive Occupation-Based programme (COB-MS) for people with Multiple Sclerosis an evidence-based intervention to address everyday problems encountered due to cognitive difficulties. The aim of this research was to explore the views of people with multiple sclerosis and occupational therapists on the programme and its potential implementation in practice. METHODS: Data were elicited from a purposive sample of 12 people from two stakeholder groups, people with multiple sclerosis (n = 5) and occupational therapists (n = 7), through focus groups and interviews. The programme and related materials were presented, and contributions recorded, transcribed and thematically analysed. RESULTS: Two main themes were identified from analysis of the data: response to the intervention and challenges to implementing the programme. Occupational therapists agreed that the COB-MS is client-centred. People with multiple sclerosis thought that it was a validating intervention. The overall format was viewed to be useful and feasible. CONCLUSION: The COB-MS for people with Multiple Sclerosis is the first known cognitive intervention using an occupation frame of reference to address difficulties faced among persons with multiple sclerosis and was found to be timely and relevant to the needs of the population.
RESUMEN
Objective: The objective of this longitudinal study examined, first, whether people with multiple sclerosis who previously advocated for angioplasty to treat chronic cerebral spinal venous insufficiency (CCSVI) through YouTube continued reporting benefits. Second, it examined a new cohort reporting on CCSVI treatment, and third, whether perspectives have changed.Method: YouTube videos from August 2011 to January 2019 related to CCSVI were retrieved. Once retrieved, all videos were compiled, classified and analyzed. Categorical data were reported and a pre-determined code-book was used to code videos. Data from the videos were extracted and analyzed using discourse analysis.Results: 1293 videos related to CCSVI were uploaded by 54 people with multiple sclerosis who met the inclusion criteria. YouTube videos uploaded by people with multiple sclerosis have shifted in volume and message. The initial surge in interest in CCSVI treatment has diminished, but there still exists strong advocates for its use. There appears to be an inconsistency between positive results, actual improvements in symptoms, and the overall messages reported. Very little long-term data was available as the procedure is relatively new.Conclusion: Practitioners may be faced with pressure to provide unproven treatments in the future and should be understanding but evidence-driven when supporting multiple sclerosis therapies.