scholarly journals Emotional distress and well-being among people with motor neurone disease (MND) and their family caregivers: a qualitative interview study

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e044724
Author(s):  
Cathryn Pinto ◽  
Adam W A Geraghty ◽  
Lucy Yardley ◽  
Laura Dennison
Keyword(s):  
Emotional Distress ◽  
Well Being ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Psychological Interventions ◽  
Structured Interviews ◽  
Face To Face ◽  
Qualitative Interview Study ◽  
The Uk ◽  
Broad Understanding

ObjectiveWe aimed to get an in-depth understanding of the emotions experienced by people with motor neurone disease (MND) and their caregivers, and to explore what impacts emotional distress and well-being.DesignQualitative study using semi-structured interviews with people with MND and caregivers.SettingParticipants were recruited from across the UK and took part in interviews conducted either face to face, by telephone or email to accommodate for varying levels of disability.Participants25 people with MND and 10 caregivers took part. Participants were purposively sampled based on their MND diagnosis, symptoms and time since diagnosis.Data analysisData were analysed using inductive reflexive thematic analysis.ResultsEight broad themes were generated (20 subthemes). Participants described the emotional distress of losing physical function and having a threatened future because of poor prognosis. Keeping up with constant changes in symptoms and feeling unsupported by the healthcare system added to emotional distress. Finding hope and positivity, exerting some control, being kinder to oneself and experiencing support from others were helpful strategies for emotional well-being.ConclusionThe study provides a broad understanding of what impacts emotional distress and well-being and discusses implications for psychological interventions for people with MND and caregivers. Any communication and support provided for people with MND and their caregivers, needs to pay attention to concepts of hope, control and compassion.

scholarly journals How meeting centres continue to support people affected by dementia: report on UK COVID-19 impact

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Shirley Evans ◽  
Jennifer Bray ◽  
Dawn Brooker
Keyword(s):  
Social Adjustment ◽  
Social Engagement ◽  
Well Being ◽  
Structured Interviews ◽  
Content Type ◽  
Face To Face ◽  
People With Dementia ◽  
Coping Model ◽  
The Uk ◽  
And Coping

Purpose Because of COVID-19 restrictions, Meeting Centres (MCs) for people affected by dementia in the UK ceased to meet physically but continued to provide remote support. The aim was to understand the extent to which MCs were able to operate when physical meetings were not possible and how they achieved particularly in relation to the adaptation and coping model and practical, emotional and social adjustment. Design/methodology/approach Semi-structured interviews and focus groups were conducted with people affected by dementia, staff, volunteers, managers and trustees from MCs. Data were collected on the type and quantity of contact MCs had with people affected by dementia during lockdown. Data were coded and mapped against adaptation and coping strategies, i.e. practical understanding and empowerment, optimising emotional well-being and opportunities for social engagement. Findings A range of remote approaches, both technological (e.g. using online platforms) and non-technological (e.g. newsletters and post) were implemented alongside limited face-to-face contact. Regular MC activities were adapted using the different approaches. It was possible to map all the adaptation and coping model support strategies to the activities delivered in this way. MCs were able to adapt rapidly to continue to support people to adjust to change. Social implications Moving forward, combining approaches (usual MC and remote) means person-centred support could be optimized, addressing social isolation and reaching those who cannot attend MCs. Originality/value This paper offers new insight into the extent to which community-based support for people with dementia can continue when face-to-face contact is not possible because of COVID-19.

scholarly journals Psychosocial impact on frontline health and social care professionals in the UK during the COVID-19 pandemic: a qualitative interview study

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e047353
Author(s):  
Henry Aughterson ◽  
Alison R McKinlay ◽  
Daisy Fancourt ◽  
Alexandra Burton
Keyword(s):  
Personal Growth ◽  
Social Care ◽  
Well Being ◽  
Work Conditions ◽  
Individual Interviews ◽  
Work Related ◽  
Qualitative Interview Study ◽  
Health And Social Care ◽  
Communication Challenges ◽  
The Uk

ObjectivesTo explore the psychosocial well-being of health and social care professionals working during the COVID-19 pandemic.DesignThis was a qualitative study deploying in-depth, individual interviews, which were audio-recorded and transcribed verbatim. Thematic analysis was used for coding.ParticipantsThis study involved 25 participants from a range of frontline professions in health and social care.SettingInterviews were conducted over the phone or video call, depending on participant preference.ResultsFrom the analysis, we identified 5 overarching themes: communication challenges, work-related stressors, support structures, personal growth and individual resilience. The participants expressed difficulties such as communication challenges and changing work conditions, but also positive factors such as increased team unity at work, and a greater reflection on what matters in life.ConclusionsThis study provides evidence on the support needs of health and social care professionals amid continued and future disruptions caused by the pandemic. It also elucidates some of the successful strategies (such as mindfulness, hobbies, restricting news intake, virtual socialising activities) deployed by health and social care professionals that can support their resilience and well-being and be used to guide future interventions.

scholarly journals How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Amy Simpson ◽  
Lara Bloom ◽  
Naomi J. Fulop ◽  
Emma Hudson ◽  
Kerry Leeson-Beevers ◽  
...  
Keyword(s):  
Care Coordination ◽  
Structured Interviews ◽  
School Work ◽  
Travel Costs ◽  
Care Plans ◽  
Use Of Technology ◽  
Number Of Factors ◽  
Qualitative Interview Study ◽  
The Uk ◽  
The Impact

Abstract Background Care coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is limited. This study aimed to explore how care coordination (or lack of) impacts on patients and carers. Semi-structured interviews were conducted with 15 patients and carers/parents in the UK, representing a range of rare conditions (including undiagnosed conditions). Transcripts were analysed thematically in an iterative process. Results Participants described a range of experiences and views in relation to care coordination. Reports of uncoordinated care emerged: appointments were uncoordinated, communication between key stakeholders was ineffective, patients and carers were required to coordinate their own care, and care was not coordinated to meet the changing needs of patients in different scenarios. As a result, participants experienced an additional burden and barriers/delays to accessing care. The impacts described by patients and carers, either attributed to or exacerbated by uncoordinated care, included: impact on physical health (including fatigue), financial impact (including loss of earnings and travel costs), and psychosocial impact (including disruption to school, work and emotional burden). Overall data highlight the importance of flexible care, which meets individual needs throughout patients’/carers’ journeys. Specifically, study participants suggested that the impacts may be addressed by: having support from a professional to coordinate care, changing the approach of clinics and appointments (where they take place, which professionals/services are available and how they are scheduled), and improving communication through the use of technology, care plans, accessible points of contact and multi-disciplinary team working. Conclusion This study provides further evidence of impacts of uncoordinated care; these may be complex and influenced by a number of factors. Approaches to coordination which improve access to care and lessen the time and burden placed on patients and carers may be particularly beneficial. Findings should influence future service developments (and the evaluation of such developments). This will be achieved, in the first instance, by informing the CONCORD Study in the UK.

scholarly journals Living a good life from the perspectives of the Chinese migrants in Scotland

2018 ◽  
Vol 8 (1) ◽  
pp. 1-11
Author(s):  
Caroline Cheng
Keyword(s):  
Asylum Seekers ◽  
Minority Group ◽  
Well Being ◽  
Social Capital Theory ◽  
Reference Points ◽  
Structured Interviews ◽  
Capital Theory ◽  
Chinese Migrants ◽  
The Social ◽  
The Uk

The 2011 Census shows 34,000 Chinese people living in Scotland, making Chinese the second largest minority group residing in Scotland. Among them, the asylum and refugee population continue to be largely invisible in the service delivery in Glasgow, which has been the only dispersal area in Scotland since 1999. Remarkably little research has been carried out on the UK Chinese migrant community in the literature, and this study proposed to fill the gap of finding out the wellbeing of this population. The researcher investigated the factors contributing to the wellbeing of twenty-five Chinese migrants, who are either asylum seekers or refugees in Glasgow as the first stage of a wellbeing study, adopting the concepts from the Wellbeing in Developing Countries framework (White, 2008). The Indicators of Integration (Strang & Ager 2008) and the Social Capital Theory (Putnam 1995) were used as reference points to explore the understanding of well-being and social connections. Semi-structured interviews were conducted to find out the core constructs of wellbeing from the Chinese peoples perspectives and thematic analysis was used in data analysis. The top five themes that emerged were childrens education, employment and financial independence, health care, freedom of speech and association, and support from own ethnic group.

scholarly journals Understanding the lived experience of British non-offending paedophiles

2020 ◽  
Vol 22 (2) ◽  
pp. 71-81
Author(s):  
Harriet Dymond ◽  
Simon Duff
Keyword(s):  
Sexual Abuse ◽  
Lived Experience ◽  
Interpretative Phenomenological Analysis ◽  
Sexual Attraction ◽  
Well Being ◽  
Future Research ◽  
Structured Interviews ◽  
Content Type ◽  
Management Techniques ◽  
The Uk

Purpose Research into paedophilia mainly uses offender samples; thus, little is understood about non-offending paedophiles. The limited body of research has been conducted in North America or Europe whose health and legal systems differ from those in the UK. Using semi-structured interviews, the purpose of this study is to explore the experience of three non-offending British paedophilic males. Design/methodology/approach The interview discussed their paedophilia, refraining from offending and perspectives on treatment initiatives. Data were analysed using interpretative phenomenological analysis. Findings Three superordinate themes emerged: “paedophilia as more than a sexuality,” “acceptance leads to management” and “barriers to support.” These encapsulated how paedophilia was understood, how accepting one’s sexual attraction is tantamount to well-being and the various obstacles to providing support were discussed. Research limitations/implications Acknowledging the sampling considerations (size and recruitment), the results implicate research into paedophilia. The onset of paedophilia was chronologically associated with typical sexual attraction, and not the result of sexual abuse as some theories suggest. Furthermore, the tenets of attraction to children extending beyond sexual desire were highlighted. Practically, the results influence future research into the area and highlight the dearth in our understanding of diverse behavioural management techniques (i.e. computerised images of children or human-like dolls). Originality/value This paper presents novel insight into the aspects of paedophilia, excluding offensive behaviour and highlights the need for affordable, UK-based services targeted towards people with a paedophilic attraction to manage child sexual abuse preventatively and not reactively.

scholarly journals Communicating psychosocial well-being in motor neurone disease to staff: results from a World Café approach

2019 ◽  
Vol 28 (9) ◽  
pp. 2579-2584 ◽  
Author(s):  
Clarissa Giebel ◽  
Gillian Medley ◽  
Sandra Smith ◽  
Maria Thornton ◽  
Moira Furlong ◽  
...  
Keyword(s):  
Well Being ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
World Cafe

scholarly journals 110 Participants and Volunteer Host Experiences of First Steps Course for Those Newly Diagnosed with Parkinson’s: A Qualitative Study

2020 ◽  
Vol 49 (Supplement_1) ◽  
pp. i37-i37
Author(s):  
E R Bodger ◽  
K Ibrahim ◽  
H C Roberts
Keyword(s):  
Information Support ◽  
Newly Diagnosed ◽  
Clinical Environment ◽  
Structured Interviews ◽  
Face To Face ◽  
Lack Of Information ◽  
Lack Of Control ◽  
The Uk ◽  
And Control

Abstract Introduction People with Parkinson’s (PwP) and their caregivers often report poor diagnosis experiences and a lack of information, support and control over Parkinson’s. First Steps is a two-day course delivered by volunteers with Parkinson’s, which aims to help those newly diagnosed and their caregivers face the future positively and take control of Parkinson’s. This study aimed to capture the views and experiences of participants and volunteer hosts of First Steps, and evaluate if it meets those aims. Methods Using purposive sampling, twelve participants comprising four PwP, five caregivers and three volunteer hosts were recruited. Face-to-face, semi-structured interviews were conducted, audio-recorded, transcribed verbatim and analysed thematically. Results Course participants found First Steps informative, supportive, and helpful in feeling more positive about Parkinson’s. Participants were reassured by the hosts having Parkinson’s, despite prior concerns regarding seeing people who might have more advanced Parkinson’s. Some found First Steps more relatable than other support services and reported that the course complemented clinician-led courses as the content was aimed at caregivers as well as PwP, with variation in information delivery techniques. Among the PwP and caregivers, two thirds reported a lack of control over Parkinson’s and some felt First Steps had improved their control. Hosts felt they had control over Parkinson’s and perceived their role to be both challenging and rewarding. Conclusions First Steps was perceived as a helpful course, offering information and support for those newly diagnosed and their caregivers in a positive and non-clinical environment. Volunteer hosts felt more control over Parkinson’s than other participants, but there was evidence that the course helped some experience more control. Suggested course improvements included: additions to the presentation content with more emphasis on taking control, and offering group follow up sessions. This will inform current expansion across the UK.

Understanding Hospice Patients’ Beliefs About Their Life Expectancy: A Qualitative Interview Study

2020 ◽  
pp. 104990912094848
Author(s):  
Jennifer M. Taber ◽  
Clare L. Stacey ◽  
Denice K. Sheehan
Keyword(s):  
Life Expectancy ◽  
Advanced Disease ◽  
Well Being ◽  
Physical Symptoms ◽  
Future Research ◽  
Common Source ◽  
Structured Interviews ◽  
Qualitative Interview Study ◽  
Hospice Patients ◽  
Length Of Life

Background: Patients with advanced disease often overestimate their life expectancy, which potentially impacts decision making. Objective: To examine the nature and source of hospice patients’ life expectancy estimates, about which little is known. Design: Using semi-structured interviews, patients were asked to estimate their life expectancy and elaborate on their response. Setting/Subjects: Participants were hospice patients ( n = 20, 55% male; 60% cancer). Measurement: We conducted thematic analysis using open and focused coding. Results: Many participants had difficulty answering the life expectancy question and expressed uncertainty about when they would die. One-third overestimated their length of life relative to actual survival. The most common source of patients’ prognostic beliefs was knowledge about their body, including physical symptoms and change over time. Half of patients reported that a provider had given them a prognostic estimate, and one-third agreed with, or gave estimates consistent with, the provider’s estimate. Some patients said providers do not know prognosis or that time of death was unknowable. Conclusions: Key findings were that 1) many hospice patients had difficulty estimating life expectancy, and 2) hospice patients’ life expectancy estimates were frequently based on their body and not on information from medical providers. These findings have implications for measuring prognostic awareness, as valid assessment is a necessary component of determining whether prognostic awareness is beneficial for patients. Future research should examine how life expectancy estimates are associated with well-being and whether results extend to larger samples of patients with advanced disease not in hospice.

scholarly journals The continuing implications of the ‘crime’ of suicide: a brief history of the present

2016 ◽  
Vol 12 (2) ◽  
pp. 210-224 ◽  
Author(s):  
Gordon Tait ◽  
Belinda Carpenter
Keyword(s):  
Well Being ◽  
Therapeutic Jurisprudence ◽  
Social Perceptions ◽  
Criminal Offence ◽  
Structured Interviews ◽  
Standard Of Proof ◽  
The Us ◽  
Prevention Programmes ◽  
History Of ◽  
The Uk

AbstractThe long history of suicide as a criminal offence still has a significant contemporary effect on how it is perceived, conceptualised and adjudged. This is particularly the case within countries where suicide is largely determined within a coronial system, such as Australia, the UK and the US. This paper details the outcomes of a study involving semi-structured interviews with coroners both in England and Australia, as well as observations at inquests. It focuses around the widely held contention that the suicide rates produced within these coronial systems are underestimations of anywhere between 15 to 50 per cent. The results of these interviews suggest that there are three main reasons for this systemic underestimation. The first reflects the legacy of suicide as a criminal offence, resulting in the highest standard of proof for findings of suicide in the UK, and a continuing stigma attached to families of the deceased. The second is the considerable pressure brought to bear upon coroners by the family of the deceased, who, because of that stigma, commonly agitate for any finding other than that of suicide. The third involves the rise of ‘therapeutic jurisprudence’, wherein coroners take on the responsibility of the emotional well-being of the grieving families, which in turn affects the likelihood of reaching a finding of suicide. The conclusions drawn by the paper are also twofold: first – with respect to the stigma of suicide – it will take a lot more than simple decriminalisation to change deeply held social perceptions within the community. Second, given that suicide prevention programmes and policies are based on such deeply questionable statistics, targeted changes to coronial legislation and practice would appear to be required.

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