122 research outputs found
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How can we adapt mindfulness courses for people with multiple sclerosis?
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Multiple challenges for people after transitioning to secondary progressive multiple sclerosis: a qualitative study
Objectives
Transitioning to secondary progressive multiple sclerosis (SPMS) is demanding for both patients and healthcare professionals. The particular challenges and the ways patients cope are poorly understood. The present study examines what challenges people face when diagnosed with SPMS by exploring experiences of people who have transitioned recently (up to 5 years).
Design
Semistructured qualitative interviews at two time points a year apart. Interviews were analysed using inductive thematic analysis.
Setting
UK.
Participants
We interviewed 21 people at baseline and 17 participated in the follow-up interviews.
Results
The majority of participants reported expecting to transition to SPMS, and the diagnosis did not make much difference to them. Participants described increasing emotional and physical challenges after transitioning to SPMS and between the first and second interviews. Planning, using distractions and maintaining social roles helped participants cope with the increased challenges. The same coping strategies were used between the two interviews. Participants felt there was not much left to do regarding the management of their symptoms. A key theme was the sense of abandonment from healthcare services after transitioning to SPMS.
Conclusions
After transitioning to SPMS, people are faced with multiple challenges. Participants described a lack of directions for symptoms management and lack of support from the healthcare system. An integrated multidisciplinary healthcare approach is crucial at the progressive stage of the disease to alleviate feelings of helplessness and promote symptom management
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The Experiences of People Who Quit Khat and the Health Care Professionals Who Support them
Background: This study aimed to explore the barriers and enablers to quitting khat from the perspective of users and the barriers and enablers to supporting users to quit from the healthcare professional (HCP) perspective.
Methods: A qualitative study using semi-structured interviews and the Theoretical Domains Framework (TDF) to collect and analyse data.
Results: Overall 10 khat users and 3 professionals were interviewed. Beliefs about the consequences of continued use facilitated user’s decisions to quit. Social influences were a barrier and enabler. For professionals, the social influence of other colleagues and working together was key in enabling them to support clients. Social / professional role and identity was also an important enabler, as professionals saw supporting users to quit as an integral part of their role. A range of behaviour change techniques was identified as potential ways in which quit attempts could be more successful, from the user and professionals perspective.
Conclusions: The study reveals the complexity of khat chewing and quitting from the perspective of khat users, such as the varied influence of family and friends. It also identifies the many barriers and enablers that professionals experience when supporting individuals to quit, such as working with other professionals. There is little evidence for the effectiveness of current quit khat services or little information outlining how they were developed. Current services would benefit from evaluating the effectiveness of the interventions using established methodology. Recommendations for practice in the field of substance misuse have been identified
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Prioritising target non-pharmacological interventions for research in Parkinson’s Disease: Achieving consensus from key stakeholders
Background: In 2014 Parkinson’s UK conducted a research prioritisation exercise with stakeholders highlighting important clinical research questions. The exercise highlighted the need for effective interventions to be developed and tested to tackle a range of non-motor symptoms including: sleep quality, stress and anxiety, mild cognitive impairment, dementia and urinary problems. The present work set out to build on this exercise by prioritising types of non-pharmacological interventions to be tested to treat the identified non-motor symptoms.
Methods: A Patient and Public Involvement Exercise was used to reach consensus on intervention priorities for the treatment on non-motor symptoms. Some Delphi techniques were also used to support the feedback collected. A first-round prioritisation survey was conducted followed by a panel discussion. Nineteen panellists completed the first-round survey (9 people with Parkinson’s and 10 professionals working in Parkinson’s) and 16 participated in the panel discussion (8 people with Parkinson’s and 8 professionals working in Parkinson’s). A second-round prioritization survey was conducted after the panel discussion with 13 people with Parkinson’s.
Results: Physical activity, third wave cognitive therapies and cognitive training were rated as priority interventions for the treatment of a range of non-motor symptoms. There was broad agreement on intervention priorities between health care professionals and people with Parkinson’s. A consensus was reached that research should focus on therapies which could be used to treat several different non-motor symptoms. In the context of increasing digitisation, the need for human interaction as an intervention component was highlighted.3
Conclusion: Bringing together Parkinson’s professionals and people with Parkinson’sresulted in a final treatment priority list which should be both feasible to carry out in routine clinical practice and acceptable to both professionals and people with Parkinson’s. The workshop further specified research priorities in Parkinson’s disease based on the current evidence base, stakeholder preferences, and feasibility. Research should focus on developing and testing non-pharmacological treatments which could be effective across a range of symptoms but specifically focusing on tailored physical activity interventions, cognitive therapies and cognitive training
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Parents' expressed emotion and mood, rather than their physical disability are associated with adolescent adjustment. A longitudinal study of families with a parent with multiple sclerosis
Objective. This study investigated the impact of the severity of parental multiple sclerosis, parents’ expressed emotion and psychological well-being on offspring’s psychological difficulties.
Design: A longitudinal study including baseline and 6-month follow-up data collected from parents and children.
Subjects: Adolescents (n=75), their parents with multiple sclerosis (n=56) and the partner without multiple sclerosis (n=40)
Main measures: Parents completed the Hospital Anxiety and Depression Scale and the Five Minutes Speech Sample, a standardised interview of expressed emotion towards their child. Parents with multiple sclerosis also completed the Expanded Disability Status Scale, a measure of illness severity. Adolescents completed the Strength and Difficulties Questionnaire, a self-report measure of psychological difficulties.
Results: Higher depression scores of the parents with multiple sclerosis at baseline correlated with increased adolescents’ internalising symptoms at 6-month follow-up (γdep=0.31, p=.004). Higher expressed emotion scores of parents with multiple sclerosis at baseline were associated with increased adolescent externalising symptoms at 6-month follow-up (γEE=4.35, p=.052). There was no direct effect of severity, duration or type of multiple sclerosis on adolescents’ adjustment at baseline or follow-up.
Conclusions: Emotional distress and expressed emotion in parents with multiple sclerosis, rather than the severity and type of multiple sclerosis had an impact on adolescents’ psychological difficulties
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Healthcare Professionals’ Perceptions of Psychological Treatment for Chronic Pain in Singapore: Challenges, Barriers and the Way Forward
Purpose: There are very few studies on healthcare providers’ experiences of delivering treatment for chronic pain in a Southeast Asian setting. The aims of this study are to understand the experiences of professionals delivering treatment for people with chronic pain in Singapore and identify possible barriers to psychological treatment for this condition within the broader experiences of these professionals. Method: Healthcare professionals with at least one year experience treating chronic pain were recruited and purposefully sampled. Fifteen inductive semi-structured interviews were conducted to explore healthcare professionals’ experiences of treating people with chronic pain. Interviews were transcribed verbatim and analysed using thematic analysis. Results: Four main themes were identified: ‘System Barriers’, ‘Core Beliefs and management of Chronic Pain’, ‘Engaging Patients in treatment’’, and ‘Creating Awareness for Chronic Pain Management.’ Professionals trained in a multidisciplinary approach to pain management were seen as rare. Professionals who could refer patients for psychological treatment do not refer due to costs, and their perception that patients may lack understanding of such a treatment. Conclusion: Reducing barriers in the access to psychological treatment in settings like Singapore will require a multifaceted approach
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Adjustment modes in the trajectory of progressive multiple sclerosis: a qualitative study and conceptual model
Objective: We examined cognitive and behavioural challenges and adaptations for people with progressive multiple sclerosis (MS) and developed a preliminary conceptual model of changes in adjustment over time.
Design: Using theoretical sampling, 34 semi-structured interviews were conducted with people with MS. Participants were between 41 and 77 years of age. Thirteen were diagnosed with primary progressive MS and 21 with secondary progressive MS. Data were analysed using a grounded theory approach.
Results: Participants described initially bracketing the illness off and carrying on their usual activities but this became problematic as the condition progressed and they employed different adjustment modes to cope with increased disabilities. Some scaled back their activities to live a more comfortable life, others identified new activities or adapted old ones, whereas at times, people disengaged from the adjustment process altogether and resigned to their condition. Relationships with partners, emotional reactions, environment and perception of the environment influenced adjustment, while people were often flexible and shifted among modes.
Conclusions: Adjusting to a progressive condition is a fluid process. Future interventions can be tailored to address modifiable factors at different stages of the condition and may involve addressing emotional reactions concealing/revealing the condition and perceptions of the environment
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Distress improves after mindfulness training for progressive MS: a pilot randomised trial
Background. Mindfulness-based interventions have been shown to effectively reduce anxiety, depression and pain in patients with chronic physical illnesses.
Objectives. We assessed the potential effectiveness and cost-effectiveness of a specially adapted Skype distant-delivered mindfulness intervention, designed to reduce distress for people affected by primary and secondary progressive MS.
Methods. Forty participants were randomly assigned to the 8-week intervention (n=19) or a waiting-list control group (n=21). Participants completed standardised questionnaires to measure mood, impact of MS and symptom severity, quality of life and service costs at baseline, post-intervention and 3-month follow-up.
Results. Distress scores were lower in the intervention group compared with the control group at post-intervention and follow-up (p<0.05), effect size -.64 post-intervention and -.94 at follow-up. Mean scores for pain, fatigue, anxiety, depression, impact of MS were reduced for the mindfulness group compared with control group at post-therapy and follow-up; effect sizes ranging from -.27 to -.99 post-intervention and -.29 to -1.12 at follow-up. There were no differences in quality-adjusted life years, but an 87.4% probability that the intervention saves on service costs and improves outcome.
Conclusions: A mindfulness intervention delivered through Skype video conferences appears accessible, feasible and potentially effective and cost-effective for people with progressive MS
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Gaining consensus on emotional wellbeing themes and preferences for digital intervention type and content to support the mental health of young people with long-term health conditions: a Delphi study
Background: Young people (YP) with long-term conditions (LTCs) are at greater risk of psychological distress than those without LTCs. Despite this, there is a scarcity of quality digital interventions designed to help improve mental well-being in this population The aim of this study was to determine what YP, parents and health professionals preferred for future interventions.
Methods: 26 YP with asthma, diabetes and/or epilepsy (the 3 most common LTCs in YP), 23 parents of YP with LTCs and 10 health professionals mainly in paediatric specialisms (total n= 59) took part in an online Delphi study to gain consensus (set at 75% agreement) on 4 questions across 3 rounds. Participants ordered psychological themes that may be experienced by YP with LTCs by importance and ranked digital intervention types and delivery modes by importance or usefulness. The most common results were reported if no consensus was reached by round 3.
Results: Participants preferred a mobile phone app (73% agreement) and a mixture of one-on-one and group support for an intervention (75% agreement). The two highest ranked psychological themes were anxiety (44%) and wanting to appear normal (38%), and the top intervention type was ‘general counselling’ (54% agreement).
Conclusion: There was a clear desire for an app to help with the psychological aspects of living with LTCs and for a combination of one-to-one and group intervention elements. Anxiety and wanting to appear ‘normal’ might be two closely linked psychological challenges that could be addressed by a single intervention.
Implications: The results will be important to consider for a future intervention, although further consultation will be needed for app development.
Patient or Public Contribution: 2 YP with a LTC provided feedback on the study protocol including the aims and procedures of the project. Another 6 YP with LTCs were consulted on an early draft of the study questionnaire (the 4 questions) which was subsequently revised. Once the project began, a PPI group consisting of two young people with LTCs and one parent of a YP with a LTC gave feedback on the research process, lay report of the results and dissemination plan
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