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De Viggiani, N., Daykin, N., Moriarty, Y. and Pilkington, P. and ...

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group members had strong associations with prisons <strong>and</strong> youth justice settings in the region, so<br />

were able to advise on which sites or gatekeepers to approach.<br />

5.3.3 INFORMED CONSENT<br />

All young people eligible to participate in the Musical Pathways project were provided with flyers<br />

that advertised the project (Appendix F). Posters advertising the project were also displayed within<br />

education <strong>and</strong> residential areas (Appendix G). Individuals who expressed an interest to take part<br />

were invited to attend a one-hour meeting with the research team <strong>and</strong> the Superact lead to learn<br />

more about the project. These were organised four weeks before each music programme<br />

commenced <strong>and</strong> provided the opportunity to explain the project in greater detail, distribute<br />

information sheets (Appendix H) <strong>and</strong> respond to questions. Samples of music produced from other<br />

programmes run by Superact were played via a portable music system. The purpose of these<br />

informal pre-programme sessions was to inform potential participants as fully as possible what<br />

would be required of them. They involved warm-up ice-breaker exercises, refreshments, discussion<br />

about individuals’ musical interests <strong>and</strong> preferences, <strong>and</strong> of their expectations <strong>and</strong> apprehensions<br />

about the music programme; a typical schedule is provided in Appendix I.<br />

Individuals were given the option to consent to the research at this meeting or to take time to<br />

consider volunteering, <strong>and</strong> therefore to provide consent at the start of the programme. It was<br />

essential that the consent process provided individuals with clear information to enable them to<br />

comprehend what they would be participating in, to be sure they understood what their consent<br />

implied, to feel able to make a free decision without coercion, <strong>and</strong> to be able to take part with no<br />

obligation to continue should they choose to withdraw. Furthermore, given that literacy levels were<br />

likely to be relatively low among some individuals, it was important to gauge their competence to<br />

provide consent. In all cases, consent was subsequently taken on a one-to-one basis by a<br />

researcher, <strong>and</strong>, in some instances, a key worker (e.g. an education officer, tutor, case worker or<br />

personal officer) would be involved to provide support <strong>and</strong> guidance. It was emphasised to<br />

volunteers that they would be invited to consent at each stage of the research, with the option to<br />

withdraw at any stage without repercussions to them. The consent form is provided in Appendix J.<br />

5.3.4 CONFIDENTIALITY AND DATA PROTECTION<br />

Caldicott Principles, used as the benchmark for safeguarding patient information within the NHS,<br />

provided the ethical framework for maintaining confidentiality for this research. Under these<br />

principles, while the project team was aware of the names <strong>and</strong> identities of participants during the<br />

programme, all personal identity data were anonymised in order to protect <strong>and</strong> respect individual<br />

participants’ identities <strong>and</strong> privacy, to ensure anonymity <strong>and</strong> confidentiality throughout data<br />

management, processing <strong>and</strong> analysis. Personal identities are not disclosed in this report <strong>and</strong> all<br />

person-identifiable information has been removed from all the data published here. Personidentifying<br />

information was only used for the purposes of recruitment <strong>and</strong> consent. Following<br />

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