Crossing spiritual boundaries: encountering, articulating and representing otherworlds

There is a growing critical social science literature around contemporary expressions of alternative spirituality. However, this literature appears to have overlooked a core feature of these spiritual experiences. For many contemporary alternative spiritual practitioners, spirit plays an active and ever present role in their everyday lives and relationships. However, the critical social science discourse has failed to adequately engage with this. Instead the dominant approach has been to suggest spirituality today is about a personal journey to the divine within, usually sustained by the purchase of widely available protean commodities such as crystals, Buddhas and weekend retreats. In this discourse the ‘spirit’ at the heart of spirituality has effectively been killed. It is my belief that this is in part a reflection of the inability of social science to encounter, articulate and represent such otherworldliness. Based on my experiences of participatory fieldwork with individuals and groups engaged in a wide range of spiritual practices, I suggest critical social science needs to be able to engage with the enchanted worlds which arise out of many contemporary spiritual experiences with respect, sensitivity and a little creativity. These practitioners are actively seeking connections between ‘this’ world and ‘otherworlds’ and it is time for critical social science to acknowledge the ‘extra-geographies’ that arise out of this. In this paper I reflect upon the methodological implications of this, and present a conceptual framework which might help us to articulate and represent the spatialities of these very enchanted spiritualities

The impact of multiple sclerosis on the identity of mothers in Italy

Purpose: This paper reports on one of the themes that emerged from the analysis of the study, regarding the perceived influence of multiple sclerosis (MS) on the identity of mothers in the socio-cultural context of Italy. Method: In-depth interviews were conducted with 16 women at various stages of MS, with follow up interviews with seven of the women. Phenomenology guided the methodology and the analysis was conducted using interpretative phenomenological analysis. Results: Through the research the value of motherhood to the women who participated emerged. The findings illustrated how many strove to maintain controlof their MS, which led to some making comparisons of themselves and other mothers and feeling different. Some women described how they adjusted their roles and found strength in being mothers but others spoke of their feelings of loss. Most women described living in the moment, appreciating the present and living each day as it came. Another significant experience was fear of stigma, both realized in the form of “pity” from others, and the perceived and actual associated stigma for their families. This contributed to why some women were reluctant to disclose their condition. The mothers who took part in this study differed in how they perceived their disabled identity. Conclusion: Although this study was conducted in the socio-cultural setting of Italy, the findings have implications for professionals working with disabled mothers and women with MS in Italy and beyond; including recognizing the value associated with fully identifying oneself as a mother, rather than solely focusing on doingmothering tasks. • Implications for Rehabilitation • Professionals need to be mindful of the value of motherhood for women with multiple sclerosis. • Professionals should support women who feel like they are battling with maintaining control of their multiple sclerosis, who may be adjusting their identity as mothers; recognizing that they may be influenced by the stage of their multiple sclerosis and whether they were diagnosed before or after having their children. • Women can have feelings of loss related to their ability to fully participate in their children’s lives and professionals should work with women to help them identify the value of their mothering role not only in physically participating in activities but also in being emotionally and physically present as a mother

Spirit knows: materiality, memory and the recovery of Spiritualist places and practices in Stoke-on-Trent

This is the author accepted manuscript. The final version is available from Taylor & Francis via the DOI in this record.Much has been written about constructing memories of place, yet few speak of the difficulties in dealing with lost, partial and fragmented histories of place. We argue that behind the idea of ‘memory of place’ is an assumption that these memories are recoverable and can build a sense of place. Our research has led us to assume the opposite: not just that the fragments of history cannot build a complete memory of place, but that this understanding of memory and place is itself skewed by its reliance on materiality. This paper stems from a project that explores the place of spirituality in everyday life through insights from Spiritualist churches and their congregations. Whilst evidence of Spiritualist locations can be partially obtained through documentary records, a key challenge has been in understanding practices in the context of Spiritualism’s disassociation with materiality and the centrality of Spirit. The paper concludes that retracing Spiritualism’s past, and capturing its contemporary spiritual practices, uncovers a ‘memory of place’ that is not only in constant transience, but that can only be known through Spirit.This work was supported by the AHRC under Grant AH/L015447/1. The project was assisted, administratively and financially, by The Open University's Faculty of Health and Wellbeing and the OpenSpace Research Centre

Health literacy and the framing of health messages in the gay community

An aim of current UK health policy is to ‘fully engage’ not only sick but also well people in pursuit of health (Wanless 2004). In this policy discourse, it is assumed that ‘health literacy’ is one of the vehicles for achieving that full engagement: namely, individuals must understand the best information about how to pursue health, not only have access to it. The present project focuses on three related issues: (1) how health information is ‘framed’, and (2) how that information is understood, evaluated and acted on by those who receive it and (3) in light of the results, what dimensions ‘health literacy’ must have if changes in health-related behaviour are to ensue. Our focus is men’s health. It is widely recognised that men are less likely to engage with their own health than women with theirs. We choose gay men as a critical case. We single out varieties of gay men in Manchester and specifically the health issues they share with other men

Access to Health Care in Contexts of Livelihood Insecurity: A Framework for Analysis and Action

The authors present a framework for analysis and action to explore and improve access to health care in resource-poor countries, especially in Africa

Using qualitative methods to explore lay explanatory models, health-seeking behaviours and self-care practices of podoconiosis patients in north-west Ethiopia

Background: Podoconiosis (endemic non-filarial elephantiasis) is a chronic, non-infectious disease resulting from exposure of bare feet to red-clay soil in tropical highlands. This study examined lay beliefs about three under-researched aspects of podoconiosis patients’ care: explanatory models, health-seeking behaviours and self-care. Methods: In-depth interviews and focus group discussions were undertaken with 34 participants (19 male, 15 female) between April-May 2015 at podoconiosis treatment centres across East and West Gojjam regions in north-west Ethiopia. Results: Explanatory models for podoconiosis included contamination from blood, magic, soil or affected individuals. Belief in heredity or divine punishment often delayed clinic attendance. All participants had tried holy water treatment and some, holy soil. Herbal treatments were considered ineffectual, costly and appeared to promote fluid escape. Motivators for clinic attendance were failure of traditional treatments and severe or disabling symptoms. Patients did not report self-treatment with antibiotics. Self-care was hindered by water being unavailable or expensive and patient fatigue. Conclusion: A pluralistic approach to podoconiosis self-treatment was discovered. Holy water is widely valued, though some patients prefer holy soil. Priests and traditional healers could help promote self-care and “signpost” patients to clinics. Change in behaviour and improving water access is key to self-care

Listening

In this paper we reflect on the kind of listening that happens in research whilst taking part in a keep fit group and getting sweaty, that pushes us to ask an interviewee 'Are you alright?' and haunts us when the project is over. This is the kind of listening that weaves through, around and beyond what is immediately heard, including the unspoken, the articulateness of objects and the listening that comes through participating. The paper stems from a project concerned with how people live, experience and manage cultural diversity and ethnic difference in their everyday lives in urban England. Divided into two sections, the first part introduces our methods that included participant observation, interviews and repeat in-depth discussion group meetings. The second reflects on our experiences of listening whilst doing, explores feelings that mediate listening and considers the time involved in listening

What 'outliers' tell us about missed opportunities for tuberculosis control: a cross-sectional study of patients in Mumbai, India

BACKGROUND: India's Revised National Tuberculosis Control Programme (RNTCP) is deemed highly successful in terms of detection and cure rates. However, some patients experience delays in accessing diagnosis and treatment. Patients falling between the 96th and 100th percentiles for these access indicators are often ignored as atypical 'outliers' when assessing programme performance. They may, however, provide clues to understanding why some patients never reach the programme. This paper examines the underlying vulnerabilities of patients with extreme values for delays in accessing the RNTCP in Mumbai city, India. METHODS: We conducted a cross-sectional study with 266 new sputum positive patients registered with the RNTCP in Mumbai. Patients were classified as 'outliers' if patient, provider and system delays were beyond the 95th percentile for the respective variable. Case profiles of 'outliers' for patient, provider and system delays were examined and compared with the rest of the sample to identify key factors responsible for delays. RESULTS: Forty-two patients were 'outliers' on one or more of the delay variables. All 'outliers' had a significantly lower per capita income than the remaining sample. The lack of economic resources was compounded by social, structural and environmental vulnerabilities. Longer patient delays were related to patients' perception of symptoms as non-serious. Provider delays were incurred as a result of private providers' failure to respond to tuberculosis in a timely manner. Diagnostic and treatment delays were minimal, however, analysis of the 'outliers' revealed the importance of social support in enabling access to the programme. CONCLUSION: A proxy for those who fail to reach the programme, these case profiles highlight unique vulnerabilities that need innovative approaches by the RNTCP. The focus on 'outliers' provides a less resource- and time-intensive alternative to community-based studies for understanding the barriers to reaching public health programmes

Integrating innovations:a qualitative analysis of referral non-completion among rapid diagnostic test-positive patients in Uganda's human African trypanosomiasis elimination programme

BACKGROUND: The recent development of rapid diagnostic tests (RDTs) for human African trypanosomiasis (HAT) enables elimination programmes to decentralise serological screening services to frontline health facilities. However, patients must still undertake multiple onwards referral steps to either be confirmed or discounted as cases. Accurate surveillance thus relies not only on the performance of diagnostic technologies but also on referral support structures and patient decisions. This study explored why some RDT-positive suspects failed to complete the diagnostic referral process in West Nile, Uganda. METHODS: Between August 2013 and June 2015, 85% (295/346) people who screened RDT-positive were examined by microscopy at least once; 10 cases were detected. We interviewed 20 RDT-positive suspects who had not completed referral (16 who had not presented for their first microscopy examination, and 4 who had not returned for a second to dismiss them as cases after receiving discordant [RDT-positive, but microscopy-negative results]). Interviews were analysed thematically to examine experiences of each step of the referral process. RESULTS: Poor provider communication about HAT RDT results helped explain non-completion of referrals in our sample. Most patients were unaware they were tested for HAT until receiving results, and some did not know they had screened positive. While HAT testing and treatment is free, anticipated costs for transportation and ancillary health services fees deterred many. Most expected a positive RDT result would lead to HAT treatment. RDT results that failed to provide a definitive diagnosis without further testing led some to question the expertise of health workers. For the four individuals who missed their second examination, complying with repeat referral requests was less attractive when no alternative diagnostic advice or treatment was given. CONCLUSIONS: An RDT-based surveillance strategy that relies on referral through all levels of the health system is inevitably subject to its limitations. In Uganda, a key structural weakness was poor provider communication about the possibility of discordant HAT test results, which is the most common outcome for serological RDT suspects in a HAT elimination programme. Patient misunderstanding of referral rationale risks harming trust in the whole system and should be addressed in elimination programmes