Janine Arnott

Predicting cancer patients’ participation in support groups: A longitudinal study

OBJECTIVE Few patients participate in cancer support groups despite their benefits. This study investigated the importance of Theory of Planned Behaviour variables in predicting group participation, relative to disease impact, existing support, coping and demographic variables. METHODS Longitudinal study of patients with colorectal, lung or prostate cancer recruited from a specialist oncology centre. Patients self-completed surveys at baseline and six-month follow up. Baseline measures included Theory of Planned Behaviour (TPB) variables, distress and control over cancer (IPQ-R), coping (Brief COPE), social support (MSPSS), health related quality of life (EORTC QLQ-C30) and readiness to participate (PAPM). Group participation and recommendations to participate were measured at follow up. Univariable and Random Forest analyses investigated predictors of baseline readiness to participate and participation by six-month follow up. RESULTS N=192 patients completed baseline questionnaires. N=13 participated in a group and N=59 did not by six-month follow up. Baseline readiness to participate was associated with inadequate support and positive views of support groups. Lower cognitive functioning, recommendations and readiness to participate predicted group participation by six-month follow up. CONCLUSION AND PRACTICE IMPLICATIONS Practitioners may facilitate group participation by promoting positive views of groups, recommending participation and focusing on patients experiencing greater disease impact and less existing support.

Auto-driven Photo Elicitation Interviews in Research with Children: Ethical and Practical Considerations

ABSTRACT Children can sometimes find it difficult to articulate their experiences if they have to rely solely on words. Giving children the opportunity to use arts-based research approaches can support their participation in research and create a bridge that enables them to express their perspectives and feelings. This paper focuses on the ethical and practical considerations when using photo elicitation interviews (PEI) in research with children. The discussion and examples provided are drawn from an international study that used auto-driven PEI, where photographs are taken by children themselves, to explore children’s experiences of living with a chronic condition and the impact condition management may have on their everyday lives. In this paper we critically explore the issues arising from our use of PEI including children’s participation and engagement, balancing power and control, and keeping children safe. The main areas of focus for the paper are how PEI provided a means of shifting control; how setting photographic boundaries influenced our PEI study with children; and how we addressed risks associated with the method. Our experience shows that PEI is an engaging and valuable research method, providing a powerful medium for obtaining rich data with children. However, PEI is challenging and it requires researchers to conscientiously address ethical and practical aspects that extend beyond those inherent to standard (words-alone) interviews.

Navigating Uncertainty: Health Professionals’ Knowledge, Skill, and Confidence in Assessing and Managing Pain in Children with Profound Cognitive Impairment

There is limited evidence to underpin the assessment and management of pain in children with profound cognitive impairment and these children are vulnerable to poor pain assessment and management. Health professionals working with children with profound cognitive impairment from a single paediatric tertiary referral centre in England were interviewed to explore how they develop and acquire knowledge and skills to assess and manage pain in children with cognitive impairment. The interviews were transcribed and subjected to thematic analysis. Nineteen health professionals representing different professional groups and different levels of experience participated in the study. A metatheme “navigating uncertainty; deficits in knowledge and skills” and two core themes “framing as different and teasing things out” and “the settling and unsettling presence of parents” were identified. Uncertainty about aspects of assessing and managing the pain of children with cognitive impairment tended to erode professional confidence and many discussed deficits in their skill and knowledge set. Uncertainty was managed through engaging with other health professionals and the childs parents. Most health professionals stated they would welcome more education and training although many felt that this input should be clinical and not classroom oriented.

The restrictions to the use of codeine and dilemmas about safe alternatives.

Objective Few patients participate in cancer support groups despite their benefits. This study investigated the importance of Theory of Planned Behaviour variables in predicting group participation, relative to disease impact, existing support, coping and demographic variables. Methods Longitudinal study of patients with colorectal, lung or prostate cancer recruited from a specialist oncology centre. Patients self-completed surveys at baseline and six-month follow up. Baseline measures included Theory of Planned Behaviour (TPB) variables, distress and control over cancer (IPQ-R), coping (Brief COPE), social support (MSPSS), health related quality of life (EORTC QLQ-C30) and readiness to participate (PAPM). Group participation and recommendations to participate were measured at follow up. Univariable and Random Forest analyses investigated predictors of baseline readiness to participate and participation by six-month follow up. Results N = 192 patients completed baseline questionnaires. N = 13 participated in a group and N = 59 did not by six-month follow up. Baseline readiness to participate was associated with inadequate support and positive views of support groups. Lower cognitive functioning, recommendations and readiness to participate predicted group participation by six-month follow up. Conclusion and practice implications Practitioners may facilitate group participation by promoting positive views of groups, recommending participation and focusing on patients experiencing greater disease impact and less existing support.

The transition of adolescents with juvenile idiopathic arthritis or epilepsy from paediatric health-care services to adult health-care services: A scoping review of the literature and a synthesis of the evidence:

Young people with long-term health conditions (LTCs) can face challenges when making the transition to adult health services. This paper sought to identify studies that assess and explore transitional care for young people with LTCs. Two conditions were used as exemplars: juvenile idiopathic arthritis (JIA) and epilepsy. A scoping review of the literature was conducted by using search terms to search for papers in English between 2001 and 2016 concerning transitional care on four databases. Qualitative papers were reviewed and synthesized using thematic analysis. Quantitative papers using health outcomes were also synthesized. Twenty-eight papers were selected for review. Despite the wealth of literature concerning aspects of transitional care that are key to a successful transition for young people with JIA or epilepsy, there is a paucity of outcomes that define ‘successful’ transition and consequently a lack of reliable research evaluating the effectiveness of transitional care interventions to support young people moving to adult health services.

Development of the Liverpool Adverse Drug Reaction Avoidability Assessment Tool

Aim To develop and test a new tool to assess the avoidability of adverse drug reactions that is suitable for use in paediatrics but which is also applicable to a variety of other settings. Methods The study involved multiple phases. Preliminary work involved using the Hallas scale and a modification of the existing Hallas scale, to assess two different sets of adverse drug reaction (ADR) case reports. Phase 1 defined, modified and refined a new tool using multidisciplinary teams. Phase 2 involved the assessment of 50 ADR case reports from a prospective study of paediatric inpatients by individual assessors. Phase 3 compared assessments with the new tool for individuals and groups in comparison to the ‘gold standard’ (the avoidability outcome set by a panel of senior investigators: an experienced clinical pharmacologist, paediatrician and pharmacist). Main Outcome Measures Inter-rater reliability (IRR), measure of disagreement and utilization of avoidability categories. Results Preliminary work—Pilot phase: results for the original Hallas cases were fair and pairwise kappa scores ranged from 0.21 to 0.36. Results for the modified Hallas cases were poor, pairwise kappa scores ranged from 0.06 to 0.16. Phase 1: on initial use of the new tool, agreement between the two multidisciplinary groups was found on 13/20 cases with a kappa score of 0.29 (95% CI -0.04 to 0.62). Phase 2: the assessment of 50 ADR case reports by six individual reviewers yielded pairwise kappa scores ranging from poor to good 0.12 to 0.75 and percentage exact agreement (%EA) ranged from 52–90%. Phase 3: Percentage exact agreement ranged from 35–70%. Overall, individuals had better agreement with the ‘gold standard’. Conclusion Avoidability assessment is feasible but needs careful attention to methods. The Liverpool ADR avoidability assessment tool showed mixed IRR. We have developed and validated a method for assessing the avoidability of ADRs that is transparent, more objective than previous methods and that can be used by individuals or groups.

Medicines in schools: a cross-sectional survey of children, parents, teachers and health professionals

Objectives To describe how individual schools manage medicines and strategies for implementation of guidance, to determine the nature of problems perceived by children, parents, teachers and healthcare professionals (HCPs) in relation to medicines management in schools and to highlight differences between these perceptions. Design A cross-sectional survey study in which questionnaires were completed by children, their parents and carers, groups of HCPs and head teachers. Results There were 158 respondents to this survey. The management of medicines varies between schools and this reflects how policy guidance is interpreted and is revealed by the differences in experience described. Head teachers acknowledge that there is a lack of expertise about medicines among their staff and they rely on interpretation of and adherence to policy and procedure and compliance with training was used as a measure of good medicines management. There are inconsistencies in how information about medicines is communicated between the healthcare team, families and schools, and there is evidence that this communication is not always timely or effective. This results in problems with medicines at school. Parents emphasised the need for staff at school to understand their child’s condition and their medicines. Conclusions There are differences between how individual schools manage medicines and interpret policy guidance and discrepancies between the views of each stakeholder group. There is some evidence that medicines management does not always meet the needs of children and their families. Fewer than half of parents and HCPs are satisfied with how medicines are dealt with in schools.

G26 Parents’ experiences of administering and manipulating medicines for children with long term chronic conditions

Aims To explore the experiences and methods used by parents to administer long term medicines to their children. Methods Semi structured qualitative interviews with parents of children who are prescribed long term medication for a chronic condition. Interviews were audio recorded and transcribed. Analysis was inductive and informed by the principles of grounded theory and constant comparison method. Results Semi structured interviews with the parents of 13 (N = 12) children between 5 to 11 years; female (n = 5) and male (n = 8). The sample is currently being extending to include the parents of up to 20 children. Parent’s accounts were variable. Some parents reported no problems administering medicines to their child but other parents described prolonged ‘battles’. Taste was cited as the main reason for a child refusing a medicine. Some methods used by parents to encourage children to comply with medication, such as rewards and reasoning are commonly used by parents giving short term medicines but these methods needed to be regularly adapted over time as their effect wore off. Parents also described ordering medicines, giving two medicines together or missing medicine doses in order to reduce ‘battles’ and increase compliance. Parents were confident in manipulating medicines (cutting, crushing or splitting tablets etc.), but had concerns about controlling the dose their child received e.g. tablets crumbling. Similarly, parents did not favour disguising medicines in food or drink as they felt this method did not work, risked losing the trust of their child, and their child potentially refusing that particular food or drink in the future. Furthermore, parents had concerns about controlling the dose of a medicine using this method. Conclusion Some parents described ‘battles’ over administering medicine to their children that had a significant and negative impact on daily family life. Taste was the major barrier to compliance. Methods perceived as favourable by clinicians, such as disguising medicines in food and drink, were not favoured by parents who employed a range of alternative strategies, some of which involved altering medicine regimens and was not supported by evidence.

G25 Communicating with parents following a suspected adverse drug reaction in a child: who says what and when?

Aim To pilot a prompt guide to support discussions between clinicians and parents following a suspect adverse drug reaction in a child. Method We designed the prompt guide in response to the findings from the Adverse Drug Reactions in Children: Qualitative study (ADRIC: QUAL) that identified parents unmet information and communication needs following a suspected ADR in their child. The prompt guide was developed by the ADRIC: QUAL and wider ADRIC study team; reviewed by parent expert advisory groups and expert advisory groups at the Medicines and Health care products Regulatory Agency (MHRA) and the Royal College of Paediatrics and Child Health (RCPCH) medicines committee before being finalised. The prompt guide was piloted at a regional children’s hospital and it is the findings of the pilot study that are reported here. We identified suspected ADRs in children through daily ward visits. Treating clinicians used the prompt guide during routine conversations with parents about that suspected ADR. Clinicians then took part in a short structured interview. Results The prompt guide was used 17 times by nurses (n = 9), specialist nurses (n = 4), and doctors (n = 4). Clinicians who used the prompt guide felt it was easy to use; was helpful in structuring and pacing the discussion; ensured all relevant topics were covered,; and empowered parents. An unexpected finding was confusion about whether a child had experienced a suspected ADR and this influenced whether discussions with families took place. Where discussions did take place, there was confusion about who communicated with parents. While doctors felt nurses were often the first to recognise, and therefore communicate with parents about suspected ADRs, few nurses recognised their role in this process and their accounts suggest that they are poorly supported in this role. Conclusion Optimal communication with parents about suspected ADRs in children depends on clinicians recognising a suspected ADR. Nurses potentially play an important role in communicating with families in such situations but they do not always recognise their role and there maybe unmet training needs.

G234(P) How children and young people self-manage their chronic illness: giving children a voice through photo-elicitation

Aim To explore children’s understanding and perception of their chronic illness and how this shapes their lives. Methods A qualitative, participatory methodology that acknowledged the children’s agency underpinned the study. We used photo-elicitation (photographs and interviews) to build knowledge grounded in the children’s experiences. Forty-five children (6–12 years) from different diagnostic groups were recruited from hospital-based and support group settings in England, Tasmania and New Zealand. The children were given digital cameras and asked to record aspects of their lives and chronic illness. Children also had the option of including pre-existing photographs into the study. The researchers then undertook audio-recorded interviews that were guided by the photographs that the children wished to talk about. Most interviews were undertaken in the child’s home. We undertook interpretative thematic analysis of the interviews and content analysis of the photographs. Results Brokering was a key concept that underpinned the children’s ways of accommodating the demands of chronic illness. The children focused on ‘I can.......’ rather than ‘I can’t.......’ and were able to talk with confidence about certain aspects of self-management. The children used creative strategies to be ‘like other children’ and many were adept at negotiating risks and benefits in order to ’fit in’. Chronic illness – to a greater or lesser extent – was ‘always there’ but it was often successfully backgrounded through careful planning. The children actively foregrounded their achievements and focused on ‘getting on’ with being a child. This was not always easy. Whilst there was evidence of much resilience, this took effort and imagination from the children and their families. The children’s parents/carers provided an important role in supporting the children’s ability to self-manage their illness. Conclusion Brokering and self-management were evident in the stories children told about themselves. The use of photo-elicitation gave the children control over those facets of their lives they wanted to discuss and share with the researchers. We found it a useful tool to discover those things that were important to the children and how they were active in ensuring that they could say ‘I can.....’