Members’ experiences of a neuromuscular disorder online support group

Introduction: Neuromuscular disorders (NMDs) cause wasting and weakening of muscles. People affected by NMDs and their carers can experience a number of adverse psychosocial consequences, which can be exacerbated by the rare nature of many of these disorders. This makes access to medical information, timely diagnoses, supportive care and peer support difficult. Options for receiving peer support are increasing through the development of online support groups (OSGs) for people affected by NMDs. Aims: This thesis examined the role of a new OSG in facilitating online peer support for people affected by NMDs and their carers. This was carried out using two distinct, but inter-related, studies. The first study examined the various ways in which members used the message board facility. The second of these studies accessed members’ personal experiences of using this OSG. Methods: In order to examine how members used this new OSG, the first study involved an inductive thematic analysis of OSG message postings. Message postings from the first five months of this OSG’s existence (n=1,914) were analysed, so as to identify the main thematic content of members’ discussions. The second study accessed participants’ personal accounts of their OSG experiences. Semi-structured interviews were conducted with six OSG members and were analysed using Interpretative Phenomenological Analysis (IPA). This interview element examined the context through which members decided to use the group, factors that contributed to their continued use of the group, and the personal impact of participation. Results: The OSG message postings analysis demonstrated how members created a sense of community spirit by establishing common ground through disclosing personal information, searching for connections with people with similar illness experiences or interests, welcoming new members, and sharing aspirations for the development of a resourceful community. Experiences, emotional reactions and support were shared in relation to: delayed diagnosis; symptom interpretation; illness management and progression; and the sense of isolation incurred when managing a rare disorder. The board was also used to discuss societal and political issues pertaining to living with an NMD and methods of raising awareness of such conditions. The results of the interview study showed the valued connection that the OSG gave participants to similar others, in a friendly, non-pressurised environment. Members especially valued the reassurance of knowing that they were not alone in coping with their often-rare condition. The group provided participants with an understanding audience: a rare experience for a group whose condition is not widely known or understood. The information exchanged on the OSG was appreciated due to its specificity in dealing with NMDs. The board was also considered an important platform for raising awareness of NMD-related issues. The gratifying experience of helping other NMD sufferers was highlighted as a key theme. Participants also felt that the OSG was not without its limitations. Difficulties in relating to other people (because of varying disability levels, different disease progression histories, and different views on politics and other interests) influenced participants’ levels of interaction and the perceived benefits of the group. Less common concerns for the group – but important for some individuals – were privacy concerns in using a publicly accessible group and difficulty navigating through the message postings. Conclusions: This thesis provides a novel, in-depth insight into how people used a new OSG for NMDs, and the personal impact of participating in such a group. Analyses of message posting and interview data highlight the vital psychosocial support provided by the OSG, especially given the rarity of many of these conditions. However, it was found that some obstacles to support are inherent in the OSG itself, tempering assessments of the impact of its use

Members’ experiences of a neuromuscular disorder online support group

Introduction: Neuromuscular disorders (NMDs) cause wasting and weakening of muscles. People affected by NMDs and their carers can experience a number of adverse psychosocial consequences, which can be exacerbated by the rare nature of many of these disorders. This makes access to medical information, timely diagnoses, supportive care and peer support difficult. Options for receiving peer support are increasing through the development of online support groups (OSGs) for people affected by NMDs. Aims: This thesis examined the role of a new OSG in facilitating online peer support for people affected by NMDs and their carers. This was carried out using two distinct, but inter-related, studies. The first study examined the various ways in which members used the message board facility. The second of these studies accessed members’ personal experiences of using this OSG. Methods: In order to examine how members used this new OSG, the first study involved an inductive thematic analysis of OSG message postings. Message postings from the first five months of this OSG’s existence (n=1,914) were analysed, so as to identify the main thematic content of members’ discussions. The second study accessed participants’ personal accounts of their OSG experiences. Semi-structured interviews were conducted with six OSG members and were analysed using Interpretative Phenomenological Analysis (IPA). This interview element examined the context through which members decided to use the group, factors that contributed to their continued use of the group, and the personal impact of participation. Results: The OSG message postings analysis demonstrated how members created a sense of community spirit by establishing common ground through disclosing personal information, searching for connections with people with similar illness experiences or interests, welcoming new members, and sharing aspirations for the development of a resourceful community. Experiences, emotional reactions and support were shared in relation to: delayed diagnosis; symptom interpretation; illness management and progression; and the sense of isolation incurred when managing a rare disorder. The board was also used to discuss societal and political issues pertaining to living with an NMD and methods of raising awareness of such conditions. The results of the interview study showed the valued connection that the OSG gave participants to similar others, in a friendly, non-pressurised environment. Members especially valued the reassurance of knowing that they were not alone in coping with their often-rare condition. The group provided participants with an understanding audience: a rare experience for a group whose condition is not widely known or understood. The information exchanged on the OSG was appreciated due to its specificity in dealing with NMDs. The board was also considered an important platform for raising awareness of NMD-related issues. The gratifying experience of helping other NMD sufferers was highlighted as a key theme. Participants also felt that the OSG was not without its limitations. Difficulties in relating to other people (because of varying disability levels, different disease progression histories, and different views on politics and other interests) influenced participants’ levels of interaction and the perceived benefits of the group. Less common concerns for the group – but important for some individuals – were privacy concerns in using a publicly accessible group and difficulty navigating through the message postings. Conclusions: This thesis provides a novel, in-depth insight into how people used a new OSG for NMDs, and the personal impact of participating in such a group. Analyses of message posting and interview data highlight the vital psychosocial support provided by the OSG, especially given the rarity of many of these conditions. However, it was found that some obstacles to support are inherent in the OSG itself, tempering assessments of the impact of its use

Workplace complementary and alternative therapies for hospital‐site staff

Purpose – Workplace wellness schemes are emerging in NHS settings, including complementary and alternative therapy services aimed at improving employee wellbeing. The aim of this study is to explore the impact of one such therapy service on service users based at a large UK teaching hospital.Design/methodology/approach – In-depth semi-structured interviews were undertaken with seven staff members who participated in at least one workplace complementary or alternative therapy. An Interpretative Phenomenological Analysis approach was taken in the design of interviews and the analysis of interview data.Findings – The following themes were elucidated: having positive but tentative expectations of therapies; enhancing health and wellbeing through therapy; appreciation for the “Q-active” therapy service as part of a workplace wellness programme; and work influencing therapy use and vice versa.Originality/value – The study adds to the limited research literature evaluating workplace health interventions by using an interview-based qualitative approach to access employees’ experiences of this type of workplace complementary and alternative therapies. Valuable insights were gained about the significance of this particular aspect of a larger workplace health programme. The emergent themes build on the existing literature on individuals’ expectations and experiences of complementary and alternative therapies and also on the potential benefits of such a service for workplace health promotion

The use of an online support group for neuromuscular disorders: a thematic analysis of message postings

Purpose: People affected by neuromuscular disorders can experience adverse psychosocial consequences and difficulties accessing information and support. Online support groups provide new opportunities for peer support. The aim of this study was to understand how contributors used the message board function of a newly-available neuromuscular disorders online support group. Methods: Message postings (n=1,951) from the first five months of the message board of a newly-formed online support group for neuromuscular disorders hosted by a charitable organisation were analysed using inductive thematic analysis. Results: Members created a sense of community through disclosing personal information, connecting with people with similar illness experiences or interests, welcoming others, and sharing aspirations for the development of a resourceful community. Experiences, emotional reactions and support were shared in relation to: delayed diagnosis; symptom interpretation; illness management and progression; the isolating impact of rare disorders; and the influence of social and political factors on illness experiences. Conclusions: This study provided a novel insight into individuals’ experiences of accessing a newly-available online support group for rare conditions hosted by a charitable organisation. The findings highlight how the online support group provided an important peer support environment for members to connect with others, exchange information and support, and engender discussion on political and social issues unique to living with often-rare neuromuscular disorders. Online support groups may therefore provide an important and easily accessible support outlet for people with neuromuscular disorders as well as a platform for empowering members to raise awareness about the impact of living with these conditions. Further research is needed to examine member motivations for using such groups and any effects of participation in greater detail

Improving trial recruitment through improved communication about patient and public involvement : an embedded cluster randomised recruitment trial

Background: Evidence is emerging that patient and public involvement in research (PPIR) may improve recruitment into randomised controlled trials, but the best methods to achieve improvement are unclear. Although many trials use PPIR to improve design and conduct, many do not communicate their use of PPIR clearly to potential participants. Directly communicating PPIR might encourage participation through increased patient confidence and trust in a trial. We aimed to develop and evaluate the impact on recruitment an intervention communicating PPIR in a trial to potential participants. Methods: This study was embedded in EQUIP, a cluster randomised controlled trial which allocated mental health teams in England to either a training intervention group to improve service user and carer involvement in care planning, or to a control group (no training). We conducted a cluster randomised trial of a recruitment intervention communicating PPIR, embedded within the EQUIP trial. The principles underlying the intervention were informed by a systematic review and a workshop that included mental health service users and trialists. Working with EQUIP PPIR partners (service users and carers) we developed the intervention using a leaflet to advertise the nature and function of the PPIR. Professional graphic design optimised readability and impact. Patients identified as potentially eligible for EQUIP were randomised to receive the leaflet or not, alongside the standard trial information. The primary outcome was the proportion of participants enrolled in EQUIP. The secondary outcome was the proportion expressing interest in taking part. Results: 34 clusters (mental health teams) were recruited, and 8182 potential participants were randomised. Preliminary analyses show that for the primary outcome, 4% of patients receiving the PPIR leaflet were enrolled vs. 5.3% in the control group. For the secondary outcome 7.3% of potential participants receiving the PPIR leaflet responded positively to the invitation to participate, vs. 7.9% in the control group. Future analyses will be by intention-to-treat and use logistic regression to estimate between-group odds ratios (ORs) and corresponding 95% confidence intervals. A planned secondary analysis will explore whether the impact of the intervention is moderated by age and gender. Conclusion: In preliminary analysis of this large trial, communicating PPIR demonstrated no benefits for improving the numbers of potential participants expressing interest in the trial, and reduced trial enrolment. Our findings contrast with the literature suggesting PPIR benefits recruitment. We will discuss the potential reasons for this finding, along with implications for future recruitment practice and research

The impact of advertising patient and public involvement on trial recruitment: embedded cluster randomised recruitment trial

BACKGROUND Patient and public involvement in research (PPIR) may improve trial recruitment rates, but it is unclear how. Where trials use PPIR to improve design and conduct, many do not communicate that clearly to potential participants. Better communication of PPIR might encourage patient enrolment, as trials may be perceived as more socially valid, relevant, and trustworthy. We aimed to evaluate the impact on recruitment of directly advertising PPIR to potential trial participants. METHODS A cluster trial, embedded within a host trial ('EQUIP') recruiting service users diagnosed with severe mental illness. The intervention was informed by a systematic review, a qualitative study, social comparison theory and a stakeholder workshop including service users and carers. Adopting Participatory Design approaches, we co-designed the recruitment intervention with PPIR partners using a leaflet to advertise the PPIR in EQUIP and sent potential participants invitations with the leaflet (intervention group) or not (control group). Primary outcome was the proportion of patients enrolled in EQUIP. Secondary outcomes included the proportions of patients who positively responded to the trial invitation. RESULTS 34 community mental health teams were randomised and 8182 service users invited. For the primary outcome, 4% of patients in the PPIR group were enrolled versus 5.3% of the control group. The intervention was ineffective for improving recruitment rates (adjusted OR= 0.75, 95% CI= 0.53 to 1.07, p=0.113). For the secondary outcome of positive response, the intervention was not effective, with 7.3% of potential participants in the intervention group responding positively versus 7.9% of the control group (adjusted OR=0.74, 95% CI= 0.53 to 1.04, p=0.082). We did not find a positive impact of directly advertising PPIR on any other outcomes. CONCLUSION To our knowledge, this is the largest ever embedded trial to evaluate a recruitment or PPIR intervention. Advertising PPIR did not improve enrolment rates, or any other outcome. It is possible that rather than advertising PPIR being the means to improve recruitment, PPIR may have an alternative impact on trials by making them more attractive, acceptable and patient-centred. We discuss potential reasons for our findings and implications for recruitment practice and research

Working with families affected by mental distress: stakeholders' perceptions of mental health nurses educational needs

Family and informal caregivers provide a substantial amount of care and support to people who experience mental health problems. The aim of this study was to explore mental health nurses’, students’ and service users’ perceptions of the knowledge, skills and attitudes that are required by mental health nurses to work with families and carers using a qualitative methodology. Three themes emerged from the data: Knowledge of the family and how mental distress affects the family; Working with the family – support and education and Valuing the role of the family. The three themes demonstrate the complexity of preparing mental health nurses to work with families and carers and the paper offers recommendations about how this might be achieved

Investigating and evaluating evidence of the behavioural determinants of adherence to social distancing measures – A protocol for a scoping review of COVID-19 research

Background: The WHO has declared the outbreak of coronavirus disease 2019 (COVID-19) as a pandemic. With no vaccine currently available, using behavioural measures to reduce the spread of the virus within the population is an important tool in mitigating the effects of this pandemic. As such, social distancing measures are being implemented globally and have proven an effective tool in slowing the large-scale spread of the virus. Aim: This scoping review will focus on answering key questions about the state of the evidence on the behavioural determinants of adherence to social distancing measures in research on COVID-19. Methods: A scoping review will be conducted in accordance with guidelines for best practice. Literature searches will be conducted using online databases and grey literature sources. Databases will include Medline, Web of Science, Embase and PsycInfo, alongside relevant pre-print servers. Grey literature will be searched on Google Scholar. Screening, data extraction and quality appraisal will be conducted by members of the research team, with any discrepancies resolved by consensus discussion. Quality appraisal will be conducted using the Cochrane’s ROBINS-I tool, the Cochrane Risk of Bias tool, and the JBI Critical Appraisal Checklist where appropriate. Results will be analysed by mapping findings onto the Theoretical Domains Framework and visualising characteristics of the included studies using EviAtlas. This scoping review is pre-registered with Open Science Framework. Conclusions: The results of this study may facilitate the systematic development of behavioural interventions to increase adherence to social distancing measures