Conducting phenomenological research on self-help groups: How to understand an experience that you do not share?

Self-help groups tend to be composed of people who believe their experience can only be understood by those who share the same experience. How then is it possible for qualitative researchers to study their experience from a phenomenological perspective? In 2008 I was asked by a self-help group for Japanese family survivors of suicide (hereafter “survivors”) to conduct research on their organization because they believed that the great potential of self-help groups to help survivors was not being recognised by human service professionals and the government. They were hoping my endorsement of their activities would increase social recognition of their self-help groups. The survivors were very critical of professionals who claimed to understand what they were experiencing because the survivors believed their experience could only be understood by someone who shared the same experience. I describe how I approached researching the survivors’ experience, and relate three stories addressing a failure, a success, and a challenge respectively. Initially, I tried to understand survivors’ experience by remembering the suicide of a student I had known, but this proved ineffective. The success relates to a metonymic approach to grief adopted by the survivors, who used the expression “Grief is love” to focus their experience. The challenge relates to how long one should grieve. Although group leaders insisted their grief could never be resolved, in reality some survivors left the group after their grief had become bearable. Through the use of metaphors, I was able to approach and begin to understand survivors’ experience

The Professor’s Dilemma: When Japanese University Research Ethics Committee Guidance Hinders Qualitative Inquiry in Partnership with People

Japanese universities have only recently introduced research ethics committees (RECs) in social science disciplines. Without considering the growing literature claiming that qualitative research can be hindered by RECs, my university now requires all postgraduate students to obtain REC approval if they plan to conduct research on human subjects. This places me, as a professor of social work, in a dilemma: although the REC’s guidance can hinder qualitative research projects, I am required to tell my students to follow their guidance. In this paper, I share my experience of helping a student get REC approval and discuss the problems we faced. My concerns can be summarized as follows: first, cultural differences between Japan and the West are ignored in the REC approval process. For example, in a high-context culture such as Japan’s, any written contract between a researcher and a research participant tends to be considered a mere formality. Second, the authoritative approach of RECs can intimidate both researchers and research participants. Third, in my student’s case, her participants were social activists with Alzheimer’s disease who wanted to be involved in the research process as research partners. The REC, however, classified her research participants as vulnerable

Self-Help and Mutual Aid Group Volunteering

This chapter explores a type of formal volunteering, carried out in groups, by peers who share a problematic health, economic, or social condition or situation. Peers meet together in self-help/mutual aid groups (SH/MAGs) to alleviate or improve their own circumstances. Of particular importance are the reciprocal social relationships in these groups – active participants both give and receive support. The chapter traces the broad history of SH/MAGs, reflecting similarities and differences in the co-authors’ regions of the world. The benefits that accrue to people active in SH/MAGs are highlighted at a personal, collective, and community level. The authors explore how self-help/mutual aid is enabled, given the challenges currently facing this form of volunteering, including global economic austerity and the dominance of professional and paternalistic modes of help. We use the dual term SH/MA to emphasize a distinguishing feature of this type of volunteering: SH/MA is an activity based on a kind of reciprocity known as the helper principle

Bcl-2-like protein 13 is a mammalian Atg32 homologue that mediates mitophagy and mitochondrial fragmentation

Damaged mitochondria are removed by mitophagy. Although Atg32 is essential for mitophagy in yeast, no Atg32 homologue has been identified in mammalian cells. Here, we show that Bcl-2-like protein 13 (Bcl2-L-13) induces mitochondrial fragmentation and mitophagy in mammalian cells. First, we hypothesized that unidentified mammalian mitophagy receptors would share molecular features of Atg32. By screening the public protein database for Atg32 homologues, we identify Bcl2-L-13. Bcl2-L-13 binds to LC3 through the WXXI motif and induces mitochondrial fragmentation and mitophagy in HEK293 cells. In Bcl2-L-13, the BH domains are important for the fragmentation, while the WXXI motif facilitates mitophagy. Bcl2-L-13 induces mitochondrial fragmentation in the absence of Drp1, while it induces mitophagy in Parkin-deficient cells. Knockdown of Bcl2-L-13 attenuates mitochondrial damage-induced fragmentation and mitophagy. Bcl2-L-13 induces mitophagy in Atg32-deficient yeast cells. Induction and/or phosphorylation of Bcl2-L-13 may regulate its activity. Our findings offer insights into mitochondrial quality control in mammalian cells

Relapse rate and predictors of relapse after cessation of glucocorticoid maintenance therapy in type 1 autoimmune pancreatitis: a multicenter retrospective study

Abstract Background Type 1 autoimmune pancreatitis responds well to glucocorticoid therapy with a high remission rate. Moreover, glucocorticoid maintenance therapy can help prevent relapse. However, the relapse rate following cessation of long-term glucocorticoid therapy is unknown. The aim of this study was to clarify the relapse rate and predictors of relapse following long-term glucocorticoid therapy cessation. Methods We analyzed 94 patients who achieved remission after undergoing glucocorticoid therapy, discontinued treatment after at least 6 months of maintenance therapy, and were subsequently followed up for at least 6 months. The patients were divided into three groups based on treatment duration (< 18, 18–36, and ≥ 36 months), and their relapse rates were compared. Univariate and multivariate analyses of clinical factors were conducted to identify relapse predictors. Results After discontinuing glucocorticoid therapy, relapse was observed in 43 (45.7%) patients, with cumulative relapse rates of 28.2% at 1 year, 42.1% at 3 years, 47.0% at 5 years, and a plateau of 77.6% at 9 years. Of the 43 patients who relapsed, 25 (58.1%) relapsed within 1 year after after cessation of glucocorticoid therapy. Relapse and cumulative relapse rates did not differ significantly according to treatment duration. In the multivariate analysis, an elevated serum IgG4 level at the time of glucocorticoid cessation was found to be an independent predictor of relapse (hazard ratio, 4.511; p < 0.001). Conclusions A high relapse rate occurred after cessation of glucocorticoid maintenance therapy, regardless of the duration of maintenance therapy, especially within the first year after cessation. However, the normalization of long-term serum IgG4 levels may be a factor in considering cessation