Alessandra Frigerio

A short version of a HRQoL questionnaire for Italian and Japanese patients with Primary Biliary Cirrhosis

BACKGROUND The available self-report questionnaire for the quality of life in patients with primary biliary cirrhosis (PBC-40) is currently validated only in the British population but it lacks an evaluation of its dimensionality. AIMS To validate the Italian and Japanese versions of PBC-40 and to assess the dimensionality of the original structure of PBC-40 by a confirmatory factor analysis. PBC-40 was translated to Italian and Japanese using the forward-backward method and then reviewed in focus groups in the framework of a large multicentric study. METHODS A sample of 290 patients with PBC (125 Italian and 165 Japanese) was administered two questionnaires previously validated for PBC-specific (PBC-40) and general quality of life (SF-36). RESULTS The confirmatory model failed to fit adequately the original hypothesized structure. A principal component analysis led to a seven-factor structure, with exclusion of 13 items characterized by lower load; PBC-27 questionnaire was the final instrument. The validity of the PBC-27 was supported by its strong correlation with the SF-36 scores. CONCLUSION We here propose an alternative structure of the quality of life questionnaire for PBC, namely PBC-27, which appears to be effective in detecting the impact of PBC on quality of life in Italian and Japanese patients.

Attention deficit/hyperactivity disorder blame game: A study on the positioning of professionals, teachers and parents:

Attention deficit/hyperactivity disorder is currently the most debated childhood psychiatric diagnosis. Given the circulation of competing perspectives about the ‘real’ causes of children’s behaviour and the ‘best’ way to treat them, we aim to analyse the interactions of the central social actors’ discourses about attention deficit/hyperactivity disorder children within the Italian context. Adopting a multi-method approach, we focus on the polyphonic chorus of voices surrounding the child, studying the discourses of mental health professionals, teachers and parents. These actors are representative of three contexts that are deeply engaged with attention deficit/hyperactivity disorder: medical institutions, schools and families. Our theoretical and methodological approach integrates positioning theory, the Bakhtinian notion of dialogical thinking and discourse analysis to study stakeholders’ reflexive and interactive positioning in terms of the attribution of rights, duties, responsibilities and power issues. The results show that mutual blame is a constitutive element of relational dynamics among the key adults surrounding attention deficit/hyperactivity disorder children. We argue that these conflicting relationships are not merely related to the debate regarding the validity of the attention deficit/hyperactivity disorder diagnosis. Rather, the mutual blame centres on questions of compliance, recognition of authority and morality. Through the blame game, adults negotiate their own and others’ subjectivity in ways that simultaneously (re)produce power relationships and resistance efforts.

'It's as if PBC didn't exist': the illness experience of women affected by primary biliary cirrhosis.

This study investigates the illness experience of women who are affected by primary biliary cirrhosis (PBC), a rare chronic liver disease which mostly affects women. Despite the fact that PBC is medically recognised, it shares many characteristics with other chronic and controversial conditions which may lead to delegitimation of the patients experience of illness, impacting on the construction of the patients self-identity. Twenty three women took part in semi-structured interviews. Data were analysed using interpretative phenomenological analysis and the analysis identified three themes that are interrelated and characterised by a dynamic of normalisation. The first theme, the delegitimation of womens experience, implies denial of patients’ sick-role, trivialisation of fatigue and lack of consideration of patients’ needs. The second theme, PBC as a challenge to womens social identity refers to how patients face delegitimation and manage the illnesss consequences for relationships and social roles. The third theme, the need for biographical continuity, focuses on how patients construct their ill identities as a consequence of both the delegitimation and the challenges posed by PBC. Results are discussed in a gender perspective, highlighting how delegitimation and identity construction processes are influenced by womens social roles and conditions.

'I still have difficulties feeling like a mother': The transition to motherhood of preterm infants mothers.

Objective: The premature birth of their infant can constitute a sudden interruption of the transition to motherhood that requires a reorganisation of the process. The present study aimed to analyse the experience of the transition to motherhood of preterm infants’ mothers, framing it within Stern’s transition to motherhood theory. Method: A semi-structured interview was administered to 30 mothers during the recovery of the infant in the Neonatal Intensive Care Unit. The interview explored the experience of mothers related to pregnancy, the infant’s birth and recovery. Results: Thematic Analyses evidenced four interrelated themes: disconnection from the child, perception of maternal inadequacy, loss of parental role and temporal suspension. The themes showed that the mothers’ experience of preterm birth not only concerns the traumatic delivery, but is also embedded in the entire process of becoming a mother within an institutional context. Conclusions: Results were connected to Stern’s theory. Findings revealed difficulties for preterm mothers that could affect the development of the maternal constellation and thus their transition to motherhood. These difficulties may influence the construction of maternal identity, mother’s representation of their child and the bond with their child.

An Ethnographic-Discursive Approach to Parental Self-Help Groups: The Case of ADHD

Mutual aid groups have become a common form of help in the mental health field. Although self-help groups are associated with a range of health and social benefits, they remain poorly understood in terms of the dynamics of their interactions. Adopting an ethnographic-discursive approach, we conducted a 6-month observation of the meetings of a self-help group of parents with children diagnosed with attention deficit/hyperactivity disorder (ADHD) to analyze the discursive dynamics of the interactions that characterized the group. Using a set of discursive strategies and practices, the parents promoted a homogeneity of viewpoints and experiences within the group and constructed a shared and consensual narrative to endorse a specific understanding of ADHD. The production of both homogeneity within the group and a shared narrative served to absolve parents of guilt, helped parents to signify their experience within a blaming social context, and preserved their identities as “good parents.”

The Doing and Undoing of the “Autistic Child”: Cutting Together and Apart Interview-Based Empirical Materials:

This article discusses how posthuman and new materialist theories afford us opportunities to rethink the production of the “autistic child,” drawing on a qualitative research project on parenthood in the context of childhood disability in Italy. We will put some Baradian’s key concepts (intra-action, agential cut and cutting together-apart) to work in glancing at the complexities we keep encountering when a mother, Arianna, describes her relationship with her daughter Laura. The aim of this article is twofold: first, to methodologically re-turn the production of the “autistic child,” and second, to rethink and unsettle the dichotomies that constitute some children as “disabled human beings,” abnormal, and undesirable.