3. CARACTERÍSTICAS DE LOS AGREGADOS
3.5. GRAVEDAD ESPECÍFICA, NORMA ASTM C-128/AASHTO T-84
3.6.1 Access and recruitment
Access to participants was primarily gained through a CF clinical setting within the National Health Service (NHS). However, conducting this educational research study in an NHS setting led to a number of challenges that needed to be negotiated in order to gain access to children and young people with CF and other
stakeholders connected to them. Despite being an adult with CF and an insider researcher, I am not employed in a clinical setting, and as an educational
researcher I am an ‘outsider’ to the NHS. My experience mirrors Beresford’s (1994) view that there is a lack of extensive crossover between educational research and medical and social policy research in relation to the education of children with medical conditions and physical disabilities. The lack of crossover has resulted in there being little research into CF and education. Therefore, gaining approvals and permissions for the study via the ethical and research and development sections of the NHS was a complex and time consuming process. At least seven separate approvals and permissions were required before the study could begin, including written permission from the local NHS trust that would allow me to access the research site. The implications of the study for conducting student social research in the NHS are considered in Chapter 8. Additional issues and challenges relating to the NHS governance process have also been considered elsewhere (see Gathercole, 2015).
Initially, the study approached two regional children’s CF centres for their support with recruitment to the study. However, one of the centres was unable to provide such support due to clinical research being prioritised during the study period.
Despite this issue, it was later discovered that there would be a number of
complexities involved in conducting research across two CF centres. The approvals process would need to have been repeated for each hospital trust where the CF centre was located. Consequently, a multi-centre study proved to be unworkable. Instead, it was decided that a single centre study in one of England’s larger CF centres would be a viable alternative. Therefore, the largest regional CF centre in the north of England inclusive of both rural and urban areas, was approached and they agreed to be involved in recruiting participants to the study.
3.6.2 Children and young people
There are at least 236 CF patients that attend the regional CF centre and
approximately 100 of these are of compulsory school-age (ranging from 5 years to 17 years at the time of the research). However, some of the patients receive shared-care with their local hospitals and therefore may not be seen as often in the regional CF centre. Further, the frequency of appointments attended varies
amongst children and young people and are influenced by the incidence of CF chest exacerbations. These factors created some uncertainty about the sample that could be achieved during the questionnaire phase of the study. Therefore, a degree of flexibility was required in terms of the length of time needed to recruit a relatively large and diverse sample of questionnaire respondents. In total, 75 children and young people responded to the questionnaire. However, the questionnaire ran for a longer period than first anticipated to achieve this sample (see section 3.9.4). The heterogeneity of children with CF was influential in recruiting children and young people to phase two. Therefore, the study employed a purposive sampling approach in the form of a dimensional sample. Dimensional sampling involves identifying various factors of interest in a population and obtaining at least one respondent that relates to each factor (Cohen et al., 2011). Children and young people who had completed the questionnaire in phase one were asked to volunteer for the phase two interviews. The aim was that one school-aged child or young person would be recruited to phase two for each of the following factors of interest:
Received IV treatment in hospital during term-time, in the last 12 months Attended school while receiving home IV treatment, in the last 12
months
Not received IV treatment at home or in hospital during term-time in the last 12 months
Unfortunately, some difficulties were experienced with the recruitment of a child or young person who had received hospital treatment during term-time as there was a shortage of volunteers for this factor of interest. Initially, I had thought that one of the young people recruited to phase two had been in hospital. Yet, I later
discovered that that this was not the case and the young person had in fact received IVs at home. However, I had already recruited another young person for this factor of interest. Nevertheless, to avoid excluding the young person from the research, I subsequently decided to recruit two children and young people who had received home IVs during term-time to be interviewed. In order to recruit a young person who had been in hospital, and in the absence of other volunteers, a decision was made to contact the paediatric CF centre and ask them to nominate a potential participant for this factor of interest.
In addition to the four school-aged children and young people recruited to phase two, one post-school leaving age young person with CF was also recruited to the research. There were two distinct reasons for the involvement of a young person who had left school. Firstly, there is evidence that young people who have left school more readily discuss their educational experiences as they are less fearful that any negative issues will be shared with their school (Cavet, 2000; Yates et al., 2010). Therefore, it was possible that this participant might reveal other aspects of educational experience not discussed by other school-aged children and young people, adding to the richness of the data. A total of five children and young people were recruited to phase two of the study.
3.6.3 Parents, and education and health professionals
The mothers of the four school-aged children and young people recruited to the interview phase of the research were also involved in the study. Gaining parental perspectives on their children’s educational experiences was seen as important, given they have unique perspectives and insights into their child’s needs; a theme of many government education policies (see for example DfE & DoH 2014; Ofsted 2015).
Each of the school-aged children and young people recruited to phase two of the study were asked to nominate an educational professional connected to them, who could be approached for their participation. The involvement of education personnel enabled the exploration of school based factors in relation to the educational
experiences of children with CF. Asking the children and young people to nominate an appropriate person was considered to be appropriate as they may have had varied relationships with different school staff such as teachers, or teaching
assistants for example. Further, the research needed to account for the variations in systems and structures within and across different schools. I sought to involve a member of the school staff for each of the four school-aged children and young people recruited to the research. However, this was not achieved for two of the child participants. In one case, the child participant informed me that the teacher he nominated was not aware of his CF. I experienced concerns that had I contacted the nominated teacher, I may have been the first person to inform them about the young person’s CF. For ethical reasons, I did not consider this to be appropriate as I would not have been in a position to answer any questions that the teacher may have had. In the other case, the young person did not want the school to be
contacted about anything relating to his CF as generally, he preferred not to share it with others at his school. I therefore considered it to be of greater importance to respect the young person’s wishes around his privacy than to have the involvement of his teacher in the research. Teachers from the schools of the remaining two children and young people with CF agreed to take part in the study. One of the young people nominated her physical education (PE) teacher, while the other nominated her former class teacher.
Given that some children with CF are frequently hospitalised and receive education in hospital, in addition to school personnel, the hospital school with responsibility for educational provision for inpatients at the paediatric CF centre was also
approached for their participation in the study. A higher level teaching assistant (HLTA) with particular responsibility for co-ordinating the hospital education of children with CF agreed to participate. Further, the paediatric CF clinical team who assisted with participant recruitment in phase one was also asked for their
involvement. Two children’s CF nurse specialists volunteered to take part. The sampling approach taken was based on the idea that children with CF participate in multiple interactional systems, and have interactions with different stakeholders in their lives, which may impact their educational experiences. It was envisaged that the involvement of parents, education and health personnel, could generate a richer picture of children’s educational experiences than simply involving children alone. This approach also allowed the research to take account of the ‘multiple truths’ of the situation (Wellington, 2000; Merriam, 2009; Cresswell, 2013).
3.6.4 Summary of phase two interview participants
The following table provides a summary of the characteristics of the children and young people who took part in the interview phase of the research, along with the
adults connected to them and other interviewees involved in the care or education of individuals with CF.
Table 3.1 Summary of interview participants