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Protocol for stage 1 of the GaP study (Genetic testing acceptability for Paget's disease of bone): an interview study about genetic testing and preventive treatment: would relatives of people with Paget's disease want testing and treatment if they were available?

BACKGROUND: Paget's disease of bone (PDB) is characterised by focal increases in bone turnover, affecting one or more bones throughout the skeleton. This disrupts normal bone architecture and causes pain, deformity, deafness, osteoarthritis, and fractures. Genetic factors are recognised to play a role in PDB and it is now possible to carry out genetic tests for research. In view of this, it is timely to investigate the clinical potential for a programme of genetic testing and preventative treatment for people who have a family history of PDB, to prevent or delay the development of PDB. Evidence from non-genetic conditions, that have effective treatments, demonstrates that patients' beliefs may affect the acceptability and uptake of treatment. Two groups of beliefs (illness and treatment representations) are likely to be influential. Illness representations describe how people see their illness, as outlined in Leventhal's Self-Regulation Model. Treatment representations describe how people perceive potential treatment for their disease. People offered a programme of genetic testing and treatment will develop their own treatment representations based on what is offered, but the beliefs rather than the objective programme of treatment are likely to determine their willingness to participate. The Theory of Planned Behaviour is a theoretical model that predicts behaviours from people's beliefs about the consequences, social pressures and perceived control over the behaviour, including uptake of treatment. METHODS/DESIGN: This study aims to examine the acceptability of genetic testing, followed by preventative treatment, to relatives of people with PDB. We aim to interview people with Paget's disease, and their families, from the UK. Our research questions are:1. What do individuals with Paget's disease think would influence the involvement of their relatives in a programme of genetic testing and preventative treatment? What do relatives of Paget's disease sufferers think would influence them in accepting an offer of a programme of genetic testing and preventative treatment? DISCUSSION: Our research will be informed by relevant psychological theory: primarily the Self-Regulation Model and the Theory of Planned Behaviour. The results of these interviews will inform the development of a separate questionnaire-based study to explore these research questions in greater detail.

Adult↗

A feasibility study of an intervention to enhance family support for breast feeding in a deprived area in Bristol, UK.

OBJECTIVE: to assess fathers' and grandmothers' knowledge of breast feeding and their ability to support successful breast feeding. To design a suitable intervention for fathers and grandmothers to support breast-feeding mothers, to assess the acceptability and feasibility of the intervention and monitor its likely effects on breast-feeding rates. DESIGN: qualitative focus groups and interviews. Evaluation of the feasibility of an antenatal intervention. SETTING: Community Health Centre and family homes in an area of relative social and economic deprivation in South Bristol, UK, from November 2001 to May 2003. PARTICIPANTS: 10 grandmothers and five fathers in focus groups and interviews. Twenty-nine families in the intervention. INTERVENTION: an antenatal intervention for grandmothers or partners to support breast feeding, which combined the benefits and mechanics of breast feeding with ways of providing support for breast feeding. FINDINGS: using an antenatal session based around a leaflet, specifically written for grandmothers and partners, and including a demonstration of good breast-feeding positioning and attachment in addition to the discussion of specific issues around the health benefits and mechanics of breast feeding was found to be acceptable, useful and enjoyable by all participants, particularly for first-time parents. The importance of fathers and grandmothers in providing emotional and practical support for breast-feeding mothers is highlighted, since those who were still breast feeding at eight weeks all felt that they were receiving similar or better support postnatally than they were antenatally. Significantly more intervention mothers were breast feeding their babies at eight weeks than in the wider practice population of mothers outside the study who intended to breast feed. Fathers' attitudes to breast feeding postnatally were fairly similar to those before the baby was born with breast feeding in public and knowing how much milk the baby was getting having the most influence on whether they felt that their partner should continue to breast feed. IMPLICATIONS FOR PRACTICE: this type of intervention could be part of a multi-faceted approach towards improving breast-feeding initiation and continuation, particularly in areas of low prevalence. Health professionals should be opportunistic about involving other family members in discussions about breast feeding whenever possible, both antenatally and postnatally.

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[Consensus, hedonism: the characteristics of new family and their consequences for the development of children].

Over the last three decades, the marital family model described by Durkheim at the end of the nineteenth century has undergone numerous changes, e.g. questioning about the principle of authority, women emancipation, occurrence of the "new fathers", the growing influence of the media on the daily life of families, the less frequent and most precious child (due to the reduced number of children per family),... Through clinical, psychoanalytical and developmental models we, here, analyze these changes together with their impact on child. Historical and sociological approaches also allowed us to examine some of the effects induced by consensus and hedonism, the new familial parameters, on the child's life and development. The modern family being classically founded upon duty (central value) and the principle of authority to settle relationships between individuals, its main features are opposed to those of the contemporary family. The latter, which started to emerge over the sixties, is characterized by both the prevalence of parent-child relationships symmetrization and the emergence of the search for immediate pleasure. The change from parental authority to consensus as a principle ruling the relationships within families leads to many consequences later noticed through changes in the construction of the child's psyche along his development and in the relationships dynamics. Authority imposes on child to submit to the parents-mediatized requirements of the society and implies a change in impulses through the setting of Superego agencies and Ego Ideal, which (both ?) represent taboos and social ideals in the psyche. When consensus is at the center of the family, and according to concrete meetings with the other offered by the thousand and one situations met in the daily life, the aims and satisfaction modalities of the child's impulses will evolve into a relation often based on either strength or seduction. As a result, the settlement of classical instances will be affected. It will result in. Considering hedonism as the central value in child education leads one to support the pleasure principle and contributes to making more difficult the switching to the reality principle. The couple " I want, I don't want" is at the origin of most behaviors, and then further leads to the development of the assertive agency, "I do what I want, and thus I am". The libidinal excitation is, therefore, little restricted and reinforced by the media-based environment. The child's Superego is built on the concrete practices of his parents, but not on their Superego, whereas the Ideal of Ego is poorly socialized and driven towards the ideal Ego, early narcissist formation with the signs of child megalomania. Due to these early years of life throughout which the pleasure principle has been favored by their environment, the children are not prepared for life with its restrictions and unavoidable frustrations possibly experienced as persecutions. In the same way, when they have to meet the requirements of life in community, eg the discipline imposed within a college, these rules are more and more often felt by a pupil as unfair, arbitrary persecutions sometimes related to his own personality, "the teacher doesn't like me" of course, it is all the more legitimate to rebel against them as the charter of the pupils' rights, posted up in the school, has been read through very quickly by the teenagers. This mechanism takes one back to the archaically perception of environment by the very young child and to the projection developed by S. Freud in his description of the building "Ego-pure pleasure", (moi-plaisir purifie) (The Ego and the id, 1920). The opposed mechanism is expressed through an experience of shame felt by the subject when he is unable to satisfy, not the requests of his own impulses, but the social group's requirements. From the libidinal point of view, advertisements stimulate one's desires, incite one to consume and are at the origin of consumer needs. As a consequence, there is a resonance between the individual pleasure principle and the promotion of hedonism suggested by the society. The modern children have their mastery of impulse motions hampered by this phenomenon. The temporality of , new children " in new families sounds centered on the present, which is made of moments of eternity, always restarted (cyclic time of the first ages of life) ; it overrides historical time with a start, an end and references to intergeneration difference and filiations. This prevalence of present offers few support to neurotic defenses, with predictable problems in social interactions due to an inability to manage the tensions issued from the time discrepancies between one and his alter ego. Tran cultural studies have shown that to any social and cultural organization corresponds one or several basic personalities; among them, modem society has exuded the standard neurotic personality characterized by an ample mental space, a strict modulation of behaviors governed by the representations play and spreading out in Le théâtre du Je (The I theatre, Mac Dougall, 1982), a conflict between desire and internalized taboo, and the problematic of transgression and guilt. The modern family produces different personality structures. This led us to assume new basic personalities as follows, and to envision some psychopathological consequences: The passive dependent personality with an extreme narcissist fragility and at high risks of depressive disorders; The perverse-anarchistic personality characterized by subjects unable to feel guilty, taking at the best advantage of others to achieve his own ends thanks to his grasping of social situations and to his own seduction, lacking of true empathy; The slightly-psychopathic personality: these subjects can integrate well, but for a short time, in a social structure. They need to frequently find a new job, move in another place or country. Their relationships with others are always disrupted and changing for they can be involved in only short commitments. They are very susceptible to immediate gratifications.

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