Living with Hereditary Haemorrhagic Telangiectasia: stigma,coping with unpredictable symptoms,and self-advocacy

Abstract

Objective: Hereditary Haemorrhagic Telangiectasia (HHT) is a genetic condition causing frequent nose bleeds, skin lesions (telangiectasia) and arteriovenous malformations. Approximately, 50% of people experience life-threatening HHT symptoms including haemorrhages in the brain, lungs and liver. This study aimed to gain a qualitative understanding of the psychosocial impact of HHT over time. Design: Using a phenomenological framework, a rigorous narrative analysis was performed on 20 semi-structured interviews with individuals with HHT aged 20s–60s. Main outcome measures: Qualitative themes explaining life experiences prior to and following a clinical diagnosis of HHT. Results: Narratives highlighted four psychosocial themes: (i) the psychological impact of visible symptoms was significant and related to experiences of social stigma, (ii) individuals struggled to identify triggers of symptoms in order to reduce unpredictability, (iii) an illness identity was rejected by minimising HHT when talking about the present self, and by positive reframing as ‘lucky’ and (iv) self-advocacy was necessitated due to lack of expert coordinated care. Conclusion: HHT has a demanding impact on social, physical and psychological well-being. These findings have significant implications for health care, as narratives about interactions with health professionals often used the terms ‘frustrating’ and ‘not being heard’.     

Parents Will Be Parents: Conceptualizing and Measuring Nonoffending Parent and Other Caregiver Support Following Disclosure of Sexual Abuse

A gap exists in the literature with regard to the theoretical conceptualization of nonoffending parental and other caregiver (NOC) support of sexually abused children. Measures need to be developed that appropriately capture this construct. The purpose of this article is to present a qualitative study that asked 17 NOCs in different ways how they supported their sexually abused children after the disclosure of the sexual abuse. The multiple different types of support were coded and, using grounded theory, the structure of NOC support emerged from the data. The final structure of NOC support had 8 dimensions, including basic needs, safety and protection, decision making, active parenting, instrumental support, availability, sensitivity to child, and affirmation.     

Personal and social knowledge

This paper is an investigation of the relation between personal and social conditions of knowledge. A coherence theory of knowledge and justification is assumed, according to which incoming information is evaluated in terms of background information. The evaluation of incoming information in terms of background information is a higher order or metamental activity. Personal knowledge and justification is based on the coherent integration of individual information. Social knowledge and justification is based on the coherent aggregation of social information, that is, the information of individuals belonging to the social group. Personal justification and consensual justification are based upon personal and consensual probabilities respectively. Consensual and personal probabilities may differ, but under salient conditions personal probabilities will coincide with consensual probabilities and consensual probabilities will coincide with truth.Research on this paper was supported by a fellowship from the John Simon Guggenheim Memorial Foundation and a grant from the National Science Foundation. I am indebted to F. Schmitt for his critical comments on the penultimate draft.     

Resolving contradictory findings on sex and social class differences in children's responses to reinforcement

Contradictory results have been reported on the effectiveness of various reinforcers with children of different ages and socioeconomic classes. The present study considered the relative effectiveness of two types of verbal and one type of tangible reinforcement on a two-choice discrimination task (marble-in-the-hole) for preschool children. IQ and operant level were treated as covariates and accounted for the observed differences in performance between the 24 middle-class and 24 lower-class children and between the 24 males and 24 females. Disparate findings of previous studies regarding sex and social class differences might have been reconciled if baseline and IQ had been considered.     

A developmental study of recognition of pictures and nouns

Children at four age levels (4, 6, 8, and 10 years) were given continuous recognition tasks using concrete noun, abstract noun, and pictorial stimuli in a 4 × 3 factorial design. Pictures were recognized significantly better than concrete and abstract nouns at the 4- and 6-year age levels and significantly better than abstract nouns at the 8- and 10-year age levels. This supported Paivio's contention that pictures are easier to remember than words because of a greater possibility of dual encoding, while Rohwer's contention that there is a shift in recognition memory development received no support. There were no significant differences between recognition of concrete and abstract nouns at any age level, which opposed the findings from adult studies and suggested that Paivio's theoretical orientation would have to be extended in order to account for developmental data. Recognition for both concrete and abstract nouns was found to be linear and increasing significantly with age, but no age trends for picture recognition were found.     

The relational tradition: landscape and canon

This essay charts the origins, influences, and evolution of the relational tradition in contemporary psychoanalysis. Considering the theoretical and philosophical influences from nineteenth-century Americans like William James and C. S Pierce, and noting the seminal modern work of Steven Mitchell and Jay Greenberg in opening a critique of one-person focused drive theory, the essay follows developments over a quarter century. Hallmarks of the relational approach-social construction, two-person psychologies, multiple self-states, social regulation and construction of identities like gender and sexual orientation, and an evolving theory of clinical practice-are reviewed. New developments in clinical theory, in the study of identity categories, in the work on embodiment and enactment, and in developmental models are also reviewed.     

The formation of a generalized categorization repertoire: effect of training with multiple domains,samples, and comparisons

The present experiment explored the effects of three variables on the spontaneous categorization of stimuli in perceptually distinct and novel domains. Each of six stimulus domains was created by morphing two images that were the domain endpoints. The endpoints of the domains were male and female faces, two abstract drawings, a car and a truck, two banded-elevation satellite land images, a tree and a cat, and two false-color satellite images. The stimulus variants at each end of a domain defined two potential perceptual classes. Training was conducted in a matching-to-sample format and used stimuli from one or two domains, one or three variants per class as samples, and one or three variants per class as comparisons. The spontaneous categorization of stimuli in the untrained stimulus domains showed the emergence of a generalized categorization repertoire. The proportion of spontaneously categorized stimuli in the new domains was positively related to the number of domains and samples used in training, and was inversely related to the number of comparisons used in training. Differential reaction times demonstrated the discriminability of the stimuli in the emergent classes. This study is among the first to provide an empirical basis for a behavior-analytic model of the development of generalized categorization repertoires in natural settings.