Table 2.
GRIPP2 short form case studies
| Section and topic | Extra detail |
|---|---|
| Case study 1 | |
| 1. Aim | To develop a tool for parents to report unintentional home injuries to their preschool children, including date and location of the injury event, which child in the family was injured, the type of injury they sustained and all of the healthcare service support they sought as a consequence of the injury |
| 2. Methods | To engage parents in all stages of the development and testing of the intervention, we established a PAG at a local children’s centre. Parents who routinely attended the children’s centre were invited to participate in the advisory group. They were approached by the staff at the children’s centre and purposively sampled to include a range of socioeconomic backgrounds, education levels, experience of parent groups, number of children and involvement in activities at the children’s centre. The PAG met in a room at the children’s centre on days when the parents would routinely attend, and crèche facilities were provided. The PAG meetings were led by one of the research team, facilitated by a member of the children’s centre staff |
| 3. Study results | There were seven core members (all mothers) who attended most meetings, and two further mothers who attended once. The PAG met six times during the study. In addition to the co-development of the primary outcome measure—an injury calendar that recorded healthcare service use by parents of injured children—the PAG members provided advice on the development of the intervention and how to identify eligible families and recruit them to the proposed trial. A draft calendar, prepared by a graphic designer, was presented to the PAG, and further feedback resulted in amendments to the format and content before it was used in the feasibility study |
| 4. Discussion and conclusions | The PAG was central to the development of the injury outcome and service use measure. PAG members informed the appearance, content and utility of the design. Although the number of data items requested for each injury event was small, there was a risk of poor completion if either the format was too complicated or the instructions were not understandable. In addition, we were concerned that participants in the study may be anxious about reporting injuries in their child for fear of being judged as a bad parent. 22 families in the feasibility study reported 151 injuries over the 6 months of follow-up, suggesting that the outcome measure was acceptable and useable by the participants, which was attributed to the co-development of the tool with parents |
| 5. Reflections and critical perspective | In this study, parents voiced concerns that ultimately led to the removal of a resource use question item. However, it may not always be appropriate to entirely remove an item (or otherwise depart from a study plan) based on what patients and members of the public report they do not like. It is plausible that there may be more objection if the rationale for the economic study is poorly described and/or if the PAG does not understand the justification for the data collection. Researchers therefore need to allow time for explanation and problem solving |
| Case study 2 | |
| 1. Aim | To identify what resources are required to care for children with cough and to establish the best mode of delivery of both a resource use questionnaire and a health utility measure for this population |
| 2. Methods | A PAG was formed after a researcher approached an existing parent and toddler group held in a community venue. The PAG met twice yearly throughout the study. Sessions were carried out by two members of the study team who liaised with the study health economist. Meetings incorporated a PAG role-play session, with observing PAG members encouraged to comment aloud as a list of proposed questions composed by the trial health economist were asked of one of the mothers. Parents’ responses revealed that certain questions on household income were intrusive and that technical labels for different types of healthcare were unfamiliar. Further consultation with parents shaped the format, content and mode of delivery of parent/carer and child materials |
| 3. Study results | The involvement of the PAG suggested that an online resource use form would work better with parents, and an appealing booklet version of the health utility measure (the CHU-9D) [21–23] would be easier for 7- to 11-year-olds. Parents were uncomfortable reporting details of earnings, and these sensitivities led to questions about personal income being omitted from a final version of the resource use survey (information on personal finances is not strictly necessary to capture the opportunity cost of time off work as an imputed wage rate is commonly used). Plain English alternatives were found for technical labels. The PAG provided feedback regarding font, graphics and images, which was taken to a graphic designer to make the survey more engaging |
| 4. Discussion and conclusions | Role play contributed to the refinement of the resource use questionnaire |
| 5. Reflections and critical perspective | Our work with the mother and toddler group indicates that approaching established groups and asking for volunteers works. However, a single PPI group drawing on a small group of mothers who all lived close together may have implications in terms of representativeness |
| Case study 3 | |
| 1. Aim | To investigate what is needed to provide a one-to-one peer-befriending service for parents of disabled children in terms of time, resources and money. The broader aim of the evaluation as a whole reflects that the research was conducted in collaboration with Face 2 Face, a service provided by the charity Scope to connect parents with disabled children to emotional and practical support |
| 2. Methods | A study stakeholder group was formed by the Face 2 Face coordinator inviting all parents with disabled children who were active befrienders in Exeter and mid and east Devon. This ensured data collection was relevant and likely to be achievable. Two involvement meetings were held with befrienders, the lead researcher and the health economist to identify the main befriending activities (e.g. visits to parents, making phone calls on behalf of parents, paperwork, travelling). All befrienders involved in providing the parent-to-parent service were invited to these meetings. Based on the outcomes of these meetings, a work-sampling form was created for completion by the befrienders in the study regarding the amount of time they spent on each of these main activities |
| 3. Study results | The involvement of the befrienders with disabled children played a significant role in influencing which data were included in the costing analysis, steered how the data were collected and helped provide an economic explanatory framework. Involving people in deciding the categories for work sampling led to the identification of the main activities and the amount of time spent in these activities from the perspective of parent befrienders themselves |
| 4. Discussion and conclusions | The data collected showed the high proportion of time spent in mutual support activities between befrienders and supervision activities. PPI indicated this was clearly a resource requirement in providing the service. This time was therefore accounted for in the intervention costing. This was unlikely to have been identified if the method of costing had been led more by researcher-based assumptions. This unanticipated perspective afforded by PPI facilitated understanding and appreciation of the resources needed to provide the service and why they were needed |
| 5. Reflections and critical perspective | The befrienders were surprised to be asked to be involved in the costing aspect of the research, stating that it was something they were not used to being involved with. In the first group meeting, jargon was initially a barrier, and the project lead needed to spend time ‘translating’ the health economics terminology. However, by the second meeting, these issues were ironed out and the health economist had a clearer way of providing explanations. What was notable was the enthusiasm of the befrienders to help steer this part of the project |
CHU-9D Child Health Utility-9 Dimensions, PAG parent advisory group, PPI patient and public involvement
1: Aim (report the aim of PPI in the study). 2: Methods (provide a clear description of the methods used for PPI in the study). 3: Study results (outcomes—report the results of PPI in the study, including both positive and negative outcomes). 4: Discussion and conclusions (outcomes—comment on the extent to which PPI influenced the study overall. Describe positive and negative effects). 5: Reflections and critical perspective (comment critically on the study, reflecting on the things that went well and those that did not, so others can learn from this experience)