Parent-perceived isolation and barriers to psychosocial support: A qualitative study to investigate how peer support might help parents of burn-injured children

Introduction: Burn injuries can be traumatic and distressing for the affected child and family, with a prolonged period of recovery. This research explores parents’ experiences of support following their child’s injury and their thoughts on peer support specifically.Methods: Thirteen semi-structured interviews were conducted with parents/caregivers, a mean of three years after their child’s injury, either face-to-face or remotely. Responses were analysed using thematic analysis.Results: Analysis produced four themes and 11 sub-themes. These described parents’ experiences of loss, change, isolation and access to psychosocial support. This paper focuses on themes of isolation and parents’ access to psychosocial support.Discussion: Findings indicate that parents access psychosocial support following their child’s injury and often find it helpful; however, there is a prevailing sense of isolation. Parents often seek information online and find that this is lacking. Many parents reported that peer support would be valuable to them, particularly the sharing of experiential knowledge.Conclusion: An online resource may be beneficial for parents, but further research is needed to confirm the exploratory data gained to date, ensuring that any resource developed would meet the identified needs of parents

From communities of Practice to Epistemic Communities: Health Mobilizations on the Internet

International audienceThis paper describes the emergence of new activist groups in the health sector, spinning off from internet discussion groups. In the first part, it shows how self-help discussion groups can be considered as communities of practice in which, partly thanks to the Internet media, collective learning activities result in the constitution of experiencial knowledge, the appropriation of exogenous sources of knowledge, including medical knoweldge and the articulation of these different sources of knowledge in some lay expertise. In the second part, it describes how activist groups might emerge from these discussion groups and develop specific modes of action drawing upon the forms of expertise constituted through the Internet groups. Activists groups together with self-help groups might form epistemic communities (Haas 1992), i.e. groups of experts engaged in a policy enterprise in which knowledge plays a major role : in the confrontation of health activists with professionals, the capacity to translate political claims into the langage of science appears as a condition to be (even) heard and be taken into consideration

Unprecedented summer hypoxia in southern Cape Cod Bay: an ecological response to regional climate change?

In late summer 2019 and 2020 bottom waters in southern Cape Cod Bay (CCB) became depleted of dissolved oxygen (DO), with documented benthic mortality in both years. Hypoxic conditions formed in relatively shallow water where the strong seasonal thermocline intersected the sea floor, both limiting vertical mixing and concentrating biological oxygen demand (BOD) over a very thin bottom boundary layer. In both 2019 and 2020, anomalously high sub-surface phytoplankton blooms were observed, and the biomass from these blooms provided the fuel to deplete sub-pycnocline waters of DO. The increased chlorophyll fluorescence was accompanied by a corresponding decrease in sub-pycnocline nutrients, suggesting that prior to 2019 physical conditions were unfavorable for the utilization of these deep nutrients by the late-summer phytoplankton community. It is hypothesized that significant alteration of physical conditions in CCB during late summer, which is the result of regional climate change, has favored the recent increase in sub-surface phytoplankton production. These changes include rapidly warming waters and significant shifts in summer wind direction, both of which impact the intensity and vertical distribution of thermal stratification and vertical mixing within the water column. These changes in water column structure are not only more susceptible to hypoxia but also have significant implications for phytoplankton dynamics, potentially allowing for intense late-summer blooms of Karenia mikimotoi, a species new to the area. K. mikimotoi had not been detected in CCB or adjacent waters prior to 2017; however, increasing cell densities have been reported in subsequent years, consistent with a rapidly changing ecosystem.</p

Self-help groups challenge health care systems in the US and UK

Purpose: This research considers how self-help groups (SHGs) and self- help organizations (SHOs) contribute to consumerist trends in two different societies: United States and United Kingdom. How do the health care systems and the voluntary sectors affect the kinds of social changes that SHGs/SHOs make? Methodology/approach: A review of research on the role of SHGs/SHOs in contributing to national health social movements in the UK and US was made. Case studies of the UK and the US compare the characteristics of their health care systems and their voluntary sector. Research reviews of two community level self-help groups in each country describe the kinds of social changes they made. Findings: The research review verified that SHGs/SHOs contribute to national level health social movements for patient consumerism. The case studies showed that community level SHGs/SHOs successfully made the same social changes but on a smaller scale as the national movements, and the health care system affects the kinds of community changes made. Research limitations: A limited number of SHGs/SHOs within only two societies were studied. Additional SHGs/SHOs within a variety of societies need to be studied. Originality/value of chapter Community SHGs/SHOs are often trivialized by social scientists as just inward-oriented support groups, but this chapter shows that local groups contribute to patient consumerism and social changes but in ways that depend on the kind of health care system and societal context

Beyond the therapeutic: a Habermasian view of self-help groups’ place in the public sphere

Self-help groups in the United Kingdom continue to grow in number and address virtually every conceivable health condition, but they remain the subject of very little theoretical analysis. The literature to date has predominantly focused on their therapeutic effects on individual members. And yet they are widely presumed to fulfil a broader civic role and to encourage democratic citizenship. The article uses Habermas’ model of the public sphere as an analytical tool with which to reconsider the literature on self-help groups in order to increase our knowledge of their civic functions. In doing this it also aims to illustrate the continuing relevance of Habermas’ work to our understanding of issues in health and social care. We consider, within the context of current health policies and practices, the extent to which self-help groups with a range of different forms and functions operate according to the principles of communicative rationality that Habermas deemed key to democratic legitimacy. We conclude that self-help groups’ civic role is more complex than is usually presumed and that various factors including groups’ leadership, organisational structure and links with public agencies can affect their efficacy within the public sphere

Tryptophan and Non-Tryptophan Fluorescence of the Eye Lens Proteins Provides Diagnostics of Cataract at the Molecular Level

The chemical nature of the non-tryptophan (non-Trp) fluorescence of porcine and human eye lens proteins was identified by Mass Spectrometry (MS) and Fluorescence Steady-State and Lifetime spectroscopy as post-translational modifications (PTM) of Trp and Arg amino acid residues. Fluorescence intensity profiles measured along the optical axis of human eye lenses with age-related nuclear cataract showed increasing concentration of fluorescent PTM towards the lens centre in accord with the increased optical density in the lens nucleolus. Significant differences between fluorescence lifetimes of “free” Trp derivatives hydroxytryptophan (OH-Trp), N-formylkynurenine (NFK), kynurenine (Kyn), hydroxykynurenine (OH-Kyn) and their residues were observed. Notably, the lifetime constants of these residues in a model peptide were considerably greater than those of their “free” counterparts. Fluorescence of Trp, its derivatives and argpyrimidine (ArgP) can be excited at the red edge of the Trp absorption band which allows normalisation of the emission spectra of these PTMs to the fluorescence intensity of Trp, to determine semi-quantitatively their concentration. We show that the cumulative fraction of OH-Trp, NFK and ArgP emission dominates the total fluorescence spectrum in both emulsified post-surgical human cataract protein samples, as well as in whole lenses and that this correlates strongly with cataract grade and age

A critical insight into practitioners’ lived experience of payment by results in the alcohol and drug treatment sector

Since former Chancellor George Osborne described reducing public spending as ‘the great national challenge of our generation’ (Her Majesty’s Treasury, 2010: 12) the UK Government have demonstrated a profound interest in Payment by Results (PbR) as a mechanism to improve service quality, value for money and innovation (Audit Commission, 2012). Although PbR is not a new initiative, it has been rebranded and sold as a vehicle that can steer ongoing strategies for reform, particularly in the field of criminal justice and drug/alcohol treatment (Her Majesty’s Government, 2010; Ministry of Justice 2013). Despite such assertions, the initiative has become synonymous with budget cuts (Community Links, 2015), the privatisation of public services (Policy Exchange, 2013) and controversy. Drawing upon the findings of a focus group with staff who work in a Therapeutic Community, this article highlights the lived experience of practitioners as PbR takes hold of the alcohol and drug treatment sector. The findings suggest that outcome-orientated incentives, such as PbR, hold the potential to transform welfare-orientated sectors into a financial, market-focused milieu

Evidence-based activism: Patients' organisations, users' and activist's groups in knowledge

This article proposes the notion of ‘evidence-based activism’ to capture patients’ and health activists’ groups’ focus on knowledge production and knowledge mobilisation in the governance of health issues. It introduces empirical data and analysis on groups active in four countries (France, Ireland, Portugal and the United Kingdom), and in four condition-areas (rare diseases, Alzheimer’s disease, ADHD – Attention Deficit Hyperactivity Disorder and childbirth). It shows how these groups engage with, and articulate a variety of credentialed knowledge and ‘experiential knowledge’ with a view to explore concerned people’s situations, to make themselves part and parcel of the networks of expertise on their conditions in their national contexts, and to elaborate evidence on the issues they deem important to address both at an individual and at a collective level. This article argues that in contrast to health movements which contest institutions from the outside, patients’ and activists’ groups which embrace ‘evidence-based activism’ work ‘from within’ to imagine new epistemic and political appraisal of their causes and conditions. ‘Evidence-based activism’ entails a collective inquiry associating patients/activists and specialists/professionals in the conjoint fabrics of scientific statements and political claims. From a conceptual standpoint, ‘evidence-based activism’ sheds light on the ongoing co-production of matters of fact and matters of concern in contemporary technological democracies

Mutual aid groups in psychiatry and substance misuse

Background: Mutuality is a feature of many ‘self-help groups’ for people with mental health and/or substance misuse needs. These groups are diverse in terms of membership, aims, organisation and resources. Collectively, in terms of the pathways for seeking help, support, social capital or simply validation as people, mutual aid groups figure at some time in the life story of many psychiatric and/or substance misuse patients. From the viewpoint of clinical services, relations with such groups range from formal collaboration, through incidental shared care, via indifference, to incomprehension, suspicion, or even hostility. How should mental health and substance misuse clinicians relate to this informal care sector, in practice? Aims: To synthesise knowledge about three aspects of the relationship between psychiatric/substance misuse services and mutual aid groups: profile groups' engagement of people with mental health and/or substance misuse needs at all stages of vulnerability, illness or recovery; characterise patterns of health benefit or harm to patients, where such outcome evidence exists; identify features of mutual aid groups that distinguish them from clinical services. Method: A search of both published and unpublished literature with a focus on reports of psychiatric and substance misuse referral routes and outcomes, compiled for meta-synthesis. Results: Negative outcomes were found occasionally, but in general mutual aid group membership was repeatedly associated with positive benefits. Conclusions: Greater awareness of this resource for mental health and substance misuse fields could enhance practice

Exercising 'soft closure' on lay health knowledge? Harnessing the declining power of the medical profession to improve online health information

This study aims to address the increasingly complex medical predicament of low quality online health information contributing to lay health knowledge and consequently to clinical outcomes. We situate the predicament within a social change paradigm of individualism, choice, diminishing medical power, and emergence of the legitimacy of lay health knowledge. We contend that the prominence of lay health knowledge has been facilitated by the internet, and is due to a surge in broadcasting of experiential knowledge coupled with increased access to and enactment of medical and non-medically sanctioned online information on health and illness. We draw on and further test the application of social closure theory to help conceive a potential solution to this enduring problem. We conduct a quality assessment of an indicative case study, Apicectomies, and test the application of our notion of soft closure on its findings, resulting in targeted, feasible and potentially beneficial solutions to increasing the medical quality of online health information. We further present the extant application of soft closure by Healthtalkonline.org, which collates a medically reliable set of experiential knowledge on a range of health issues. As such, we propose a constructive re-enactment of the traditional closure of the medical profession on medical knowledge