Involving young people in decision making about sequential cochlear implantation Rebecca Ion, Jenny Cropper, Hazel Walters St Thomas' Hearing Implanf Centre, Sf Thomas' Hospifal, London, UK Background: The National Insfifufe for Health and Clinical Excellence guidelines recommended young people who currently have one cochlear implant be offered assessment for a second, sequential implanf, due fo fhe reported improvements in sound localization and speech perception in noise. The possibility and benefits of group information and counselling assessments were considered. Previous research has shown advantages of group sessions involving young people and their families and such groups which also allow young people opporfunity fo discuss their concerns separately to their parents/guardians are found to be 'hugely important'. Such research highlights the importance of involving children in decisionmaking processes. Mefhods: Families considering a sequential cochlear implant were invited to a group information/counselling session, which included time for parents and children to meet separately. Fourteen groups were held with approximately four to five families in each session, totalling 62 patients. The sessions were facilitated by the multi-disciplinary team, with a particular psychological focus in the young people's session. Results: Feedback from families has demonstrated positive support for this format. Questionnaire feedback, to which nine families responded, indicated that seven preferred the group session to an individual session and all approved of separate groups for fhe child and parents/guardians. Conclusion/discussion: Overall the group format and psychological focus were well received in this typically surgical setting and emphasized the importance of involving the young person in the decision-making process. This positive feedback also opens up the opporfunity to use a group formaf in other assessment processes. Keywords: Decision making, Children, Auditory implant, Psychology group

Introduction The National Institute for Health and Clinical Excellence guidelines (NICE, 2009) recommendation in 2009 was to offer assessment to unilateral implant users for a second, sequential, cochlear implant. Also in 2009 fhe National Deaf Children's Society (NDCS) stated in their policy that the child should, where possible, be fully involved in the decision-making process and procedure. In an overall review of the hterature, regarding involving children in the medical decisionmaking process, it was found that their views are rarely sought or acknowledged (Coyne, 2008). Rylance (1996) discusses how decisions involving children and young people are complex and how clinical professionals are often overcautious in assessment of children's abihty to understand, which has led to a tendency to overlook a child's rights to express their views. Some authors have argued that due to the elective nature of cochlear implant surgery, implantation Correspondence to: Rebecca Ion, St Tilomas' Hearing Implant Centre, St Thomas' iHospital, London, SE1 7Ei^. Emaii: [email protected]

should only be carried out when the child is old enough to decide themselves (Lane and Bahan, 1998). However, many studies have demonstrated that outcomes are much greater if the child is implanted at a younger age (e.g. DeRaeve, 2010), therefore the decision to implant is often made by the parents, on behalf of the child. In a study carried out by Wheeler et al. (2007), a sample of young people with cochlear implants were questioned on what involvement they had had in the decision-making process. Their results showed 61VÜ (18 participants) were clear their parents had made the choice and only 10% (3 participants) felt they had made the decision themselves. The final 28% felt they had been involved but did not make the decision. In their qualitative analysis of young people with cochlear implants. Wheeler et al. (2007) found that a majority did not have an understanding of the technology they were using and that children often need additional information to make a decision. One young person stated; 7 did not want it for a while but when my teacher told me more about it in

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detail, I heard more and it seemed good, I thought I will have one' interviewer: 'why did you not want one to start with?' 7 think I was a bit scared of the operation' (male 15 years, spoken language. Wheeler et al. 2007 p. 309). With this in mind it can be argued that by involving children and young people from an early age they will have a clearer understanding of the technology and therefore its benefits and outcomes. McCabe (1996) argued we need to support children's involvement in decision making especially when the 'right choice' is not clear cut, such as when treatment ehoices are based on personal values and 'quality-oflife issues' (McCabe, Rushton, Glover, Murray and Leikin, 1996, as cited in McCabe, 1996), such as with cochlear implants. McCabe (1996) also discusses a chain of benefits of involving children in decision making. She argues it improves open communication among physicians, parents, and children; communication that is fundamental for the parent and child's satisfaction and compliance with medical care. In combination with the child's involvement in goal setting and planning which may also directly facilitate their co-operation with treatment and promote a sense of control this could, in turn, lead to positive adjustment. Hyde and Power (2006) argue children have the right to participate in all decisions; however, they summarize that the degree to which the child is involved should be relative to tbeir age and maturity. McCabe (1996) suggests children's level of involvement is on a continuum, describing a framework of three levels; (a) wanting information about the illness and treatment and preparing them for medical procedures; (b) shared decision making with parents/carers; and (c) and autonomous decision making, including choosing to defer to parents (proxy decision maker). Other research has found the provision of separate sessions for children and young people, especially adolescents, away from their caregivers as hugely important (Punpanich et al., 2008). Punpanich et al. (2008) stated it is 'Important to recognise the need of, not only caregivers, but also chiidren to have private sessions with health care providers or counsellors, where their innermost concerns can be identified and properly addressed'. Their results show that many concerns/issues can be alleviated by providing correct information and peer group support. Campbell et al. (2010) found group involvement increased knowledge levels and levels of comfort of talking to health professionals. Campbell also found with group discussion mis-information was corrected and other members became involved and led discussion. It is important to remember a cochlear implant affects both the child and their families. Incesulu et al. (2003) found making the decision was the most

stressful step for parents. The National Cochlear Implant Users Associafion recommends having the opportunity to talk to parents with children with implants or other families, going through the assessment process, might be useful. When looking into the need for psychosocial support for parents with cochlear implanted children, Spahn et al. (2001) found that 59% of mothers and 60'% of fathers were highly motivated to participate in psychosocial interventions, especially further informadon and parents groups. All of these considerations demonstrate the importance of acknowledging psychological and emotional aspects of decision making. It is also helpful to bridge the gap between child, parents, and physician, so the medical team can understand the child's concerns, the child feels listened to and the parent's uncertainties can be addressed and their understanding evaluated. All these elements are crucial when assessing a young person for cochlear implantation and whether they are prepared and understand the decisions being made. Considering all the previous researeh discussed, the St Thomas' Cochlear Implant team agreed the sequential cochlear implant assessment should consist of a group information session for children and families to meet, and provide an opportunity for parents and young people to discuss concerns/issues separately. Methods The Auditory Implant Team at St Thomas' Hospital, London, started a programme offering young unilateral implant users an opportunity to be assessed for a sequential implant in a group format. Families of children of similar age were grouped together. Individual sessions were still sometimes necessary as this was more appropriate for children with a more complex situation such as learning difficulties, their first language not being English or previous difficulties with their first implant. The team ensured that in the group sessions, all information was provided to the parents and children at an appropriate level to the child's developmental stage. The type of information provided was, for example, the level of work needed in rehabilitation, discussion of future goals to demonstrate benefit and the potential outcome of having a sequential implant. By involving children from 5 years and above, we demonstrated that all children should be involved in the decision-making process to a greater or lesser extent. Different methods were used to involve the young people of different ages. With younger children a puppet play was formulated. The storyline was based around a monkey, with one implant, who was thinking

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about having a sequential implant. The children were encouraged to help the 'puppet' think of questions he might want to ask and discuss how he might be feeling without directing questions at the children themselves. With older children a 'word game' was used where a collection of emotions (positive and negative) were laid out on the table and the young people were asked to choose three words that described how they felt about a certain activity (e.g. roller coasters). The group was then asked to describe why they had chosen those words. This gave the children an opportunity to analyse how they feel about something and demonstrate how you can have mixed emotions for the same event (i.e. be nervous but excited about a rollercoaster). They were then asked to choose three words that described how they feel about the option of having a second implant. It was hoped that by using a different activity (i.e. the rollercoaster) the young people would feel open to talk about the words they had chosen and explain to the group how they felt. Additionally, by using the word choice activity it was hoped this would elicit conversation and encourage the group to discuss and share their thoughts and views. As a snapshot way of gauging how each young person was feeling at the end of the separate group, the team would ask the young people to give a thumbs up, thumbs down, or unsure thumb for having a sequential cochlear implant. This enabled the team to ask what would help them make their decision if they were unsure. This could include, meeting someone who has had a sequential implant or speaking to their families at home after the information session. Any child's specific information was given to the parents if it was deemed by the team to be of high importance (e.g. high levels of surgical anxiety). The team then encouraged families to talk about the information session and what the young people had said at home. Feedback from families was requested to assess wbetber families were satisfied with the sequential cochlear implant assessment process. The questionnaire, designed by the team was sent to the first 20 families who had signed consent. It was not sent to families who declined a sequential implant as it was felt this may cause families to feel pressured after making their decision.

Results The team ran 14 groups, 4—5 families attending each. The patients were aged between 5 and 17 years and throughout the programme 62 patients were assessed. Eeedback was obtained from nine families who completed the questionnaire.

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All the families thought the information session was helpful, with six reporting it was the most helpful part of the assessment process in helping the child and family make their decision. Seven families preferred a group format to an individual session and all the families agreed it was good to have separate groups for the child and the parents/guardians. Six families also reported that the information session helped raise discussion within the family. Parents also reported they found it interesting to hear what the child had said when given the opportunity to speak away from them. Qualitative responses: 1. 'felt very pleased with the whole process, and the opportunities we were given for discussion' 2. 'we were very happy with everything' 3. 'I think it was good and well thought out'. Professionals have also found the groups to be highly beneficial and have reported that it has reduced clinical time needed to individually assess the child in audiology sessions.

Conclusion The positive outcomes reported in the audit have highlighted the benefits of joining families and young people together in a traditionally individual setting. With such benefits it encourages the use of groups in other situations and medical processes. The St Thomas' Auditory Implant team have since hosted an evening group, for children and families to hear the experiences of a young person who has had sequential implants, and his mother. This enabled young people and parents to ask questions and have 'real life' answers and encouraged families to meet others who were in the same situation. It is possible that this format could be used in a variety of ways but most importantly it demonstrates the importance of involving the young people in decision making, whether it is information provision and allowing them to ask questions; to jointly collaborating with their parents in making the choice. The benefits of involving young people show that they will be encouraged to ask questions, be more involved in the process, and hopefully have more positive outcomes. In Coyne's (2008) review it was establisbed young people's views are rarely sought or acknowledged and concluded healthcare professionals and parents are the significant influence on whether children's efforts to participate are facilitated and supported in a hospital setting. Therefore, it is the healthcare professionals' role to offer information groups to children being assessed in the cochlear implant service and show to families the extent to which we value the

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child's involvement and how crucial their involvement is for positive outcomes. Acknowledgement The authors would like to thank the children and their families from the Hearing Implant Centre at St. Thomas' Hospital & the 'Cochlear Implanted Children's Support Group' (CICS) References Campbell T., Beer H., Wilkins R., Sherlock E.. Merrett A., Griffiths J. 2010. I look forward. I feel insecure but 1 am ok with it. The experience of young HIV+ people attending transition preparation events: a qualitative investigation. AIDS Care, 22(2): 263-269. Coyne I. 2008. Children's participation in consultations and decision-making at health service level: a review of the literature. International Journal of Nwsim; Studies, 45(11)' 1682-1689. De Raeve L. 2010. A longitudinal study on auditory perception and speech intelligibility in deaf children implanted younger than 18 months in comparison to those implanted at later ages. Otology & Neurotoiogy, 31(8): 1261-1267.

Hyde M., Power D. 2006. 'Some ethical dimensions of cochlear implantation for deaf children and their families'. Journal of Deaf Studies and Deaf Education, 11 ( 1 ): 102-111. Incesulu A., Vural M., Erkam U. 2003. Children with cochlear implants: parental perspective. Otology á Neurotologv, 24(4)605-611. Lane H., Bahan B. 1998. 'Ethics of cochlear implantation in young children: a review and reply from a Deaf-World perspective'. Otolaryngology - Head and Neck Surgery, 119: 297. McCabe M.A. 1996. Involving children and adolescents in medical decision making: developmental and clinical considerations. Journal of Paediatric Psychology, 21(4): 505-516. National Institute for Health and Clinical Excellence. 2009. Cochlear implants for children and adults with severe to profound deafness. Technology Appraisal 166. London: NICE. Punpanich W., Detels R., Gorbach P.M., Leowsrisook P. 2008. Understanding the psychosocial needs of HIV-infected children and families: a qualitative study. Journal of the Medical Association of Thailand, 91(Suppl 3): S76-S84. Rylance G. 1996. Making decisions with children. British Medical Journal, 30(312): 794. Spahn C , Richter B., Zschocke I., Löhle E., Wirsching M. 2001. The need for psychosocial support in parents with cochlear implanted children. International Journal of Pédiatrie Otorhinoiaryngology, 57(1): 45-53. Wheeler A., Archbold S., Gregory S., Skipp A. 2007. Cochlear implants: the young people's perspective. Journal of Deaf Studies and Deaf Education, 12(3): 303-316

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Involving young people in decision making about sequential cochlear implantation.

The National Institute for Health and Clinical Excellence guidelines recommended young people who currently have one cochlear implant be offered asses...
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