Working with Parents of Children with Chronic or Long-Term Conditions to Develop and Evaluate an Evidence-Based Interactive Health Communication Application (IHCA)

Purpose: The purpose of this presentation is to explore and discuss parents' qualitative accounts of trialling a novel interactive health communication application (IHCA) to support home-based care-giving of children and young people with chronic and long term conditions. Using childhood Chronic Kidney Disease stage 3-5 (CKD) as an exemplar the presentation will report on one aspect of a wider study that developed and evaluated in a small scale, feasibility randomised controlled trial. In previous research parents identified a need for continuously available, on-line, condition-specific material to supplement specialist professional support that may not always be available (for example at night time or at weekends) and to help empower them to confidently and competently manage their child's condition at home. Structured material tailored to parents' needs are highlighted by policy documents and guidelines as key to optimising home-based care, yet childhood CKD-related on-line resource provision to actively support clinical care-giving at home is patchy and focuses on news rather than specific care-giving tasks and has little evidence-base. Therefore, we involved families and professionals in developing and evaluating new on-line material and resources to address parents' identified needs and preferences. The material and resources were compiled into a condition specific IHCA, the online parent information and support (OPIS) application. This presentation will present data from one aspect of the three phased study.

Methods: In phase 3, 20 parents of children with CKD were randomized to the intervention arm of a pilot feasibility randomized controlled trial (RCT). This presentation reports on data that were collected through semi structured interviews after parents had used OPIS for 20 weeks. All participating parents had received password protected access to the IHCA which was located on a university web-environment for the duration of the study. Parents were interviewed individually or jointly according to their preferences. All participants were interviewed after providing written consent. Interviews took place at a time and place that was convenient to participants; some therefore took place in a quiet area in the hospital setting while others took place in the family home. Interviews were guided by topic guides covering such issues as: how was the experience of using OPIS? How did you use OPIS in your family? Were there were there any difficulties in using OPIS? Interviews were digitally recorded and later transcribed. Data were analyzsed and managed using Framework, a systematic and rigorous approach to qualitative data analysis. Independent reviews of data samples were discussed by two of the researchers and with the Project Steering Group until a consensus was achieved on themes and final interpretation. This resulted in a final framework that was then applied to all transcripts by the researcher. Each coded transcript was analyzsed and pertinent information was transferred to a Microsoft Excel spread sheet where quotations were labelled for retrieval during reporting. This paper will report on the findings from analysis of interview data.

Results: 20 parents were recruited to the intervention arm and all participated in a qualitative interview at the end of the 20 week trial. Three themes emerged from analysis of parents’ interviews. The emergent themes highlight the way parents used OPIS by: 1, Helping the child and parent to understand the clinical problem 2, Reinforcing professionals' explanations and demonstrations of clinical management at home, 3, Helping strengthen trusting relationships with professionals. In this presentation the OPIS will be briefly demonstrated and each of the emergent themes from parents' interviews will be presented and discussed using illustrative quotations to support the findings:

1-Helping the child and parent to understand the clinical problem

Several parents described the way they used the purpose designed, age-appropriate, child friendly resources to help teach their children about CKD. In addition, parents, in particular those with limited health literacy explained that they found the child-friendly resources useful to help their own understanding of the condition and its treatments. Parents described how they learned from the information on OPIS how to fit the child's complex treatment regimens around family life so as to normalise clinical care-giving as much as possible. Parents explained that they did not want their child or family to be defined by the illness.  Being able to access OPIS at convenient times (for example after the child had gone to bed or was at school) enabled them to learn what they needed to support their child's clinical management without the child being aware of this in order to make their lives as family orientated and normal as possible. Managing the condition at home helped to normalise it.

2-Reinforcing professionals' explanations and demonstrations of clinical management at home,

Parents described how they could use OPIS at home after an outpatient appointment when they had received a great deal of information from different professionals, this enabled them to re-visit information and learn about it at their leisure. Parents sometimes said that at the beginning of management, immediately after diagnosis of CKD or after the transition from one level of CKD to another, or from one treatment modality to another (for example from dialysis to kidney transplant) it could be scary thinking of all the care needs their child had but being able replay at home the various demonstration videos available on OPIS from the specialist nurse or play specialist provided reassurance and meant that both parents could learn the skills and knowledge needed at their own pace 

3-Help strengthen trusting relationships with professionals.

Parents recounted the way they would search the ‘Who’s who’ section of OPIS to understand as much as possible about the role of different members of the multidisciplinary team helping to manage their child’s CKD. Furthermore, reading the resources or looking at the videos and listening to the parent and child case studies explaining the experience of living with CKD, helped parents to feel confident about discussing their child’s treatments with the team.

These qualitative findings confirm the quantative results from the RCT which found that intervention group parents showed a greater improvement in perceived competence to manage their child’s condition compared to control group parents. OPIS has the potential to beneficially affect self-reported outcomes, including parents’ perceived competence to manage home-based clinical care for children with CKD. The IHCA is available to be used as part of standard practice in the hospital where it was developed and evaluated. Further refinement of OPIS, based on feedback from parents who trialled it will enable us to adapt it and conduct a full-scale RCT of the effectiveness of OPIS. 

Conclusion: By working with families and professionals to develop and evaluate an IHCA containing material that meet parents’ needs we derived detailed insight into parents’ individual care-giving contributions. The research provides health care providers with an evidence-based, on-line exemplar for parental care-giving that will inform service commissioners' planning and providers' care delivery for growing numbers of children with CKD. The design and methodology we used are also being adapted for use with other chronic or long-term conditions.