Dr Carys Jones holds a PhD in Health Economics from Bangor University.
After completing her PhD on quality of life measurement for family carers of people with dementia, Carys has remained at the Centre for Health Economics and Medicines Evaluation (CHEME) and has worked on several projects aligned to her primary research interests of dementia and aging, including work with Care Homes.
Carys has the following advice for Researchers planning to carry out research in Welsh Care Homes:
Approaches to data collection in care homes: designing your questionnaires
Missing data can affect research studies in all settings; however, it can be an issue for care homes in particular due to difficulties engaging busy staff in a study, staff turnover, and residents being admitted to hospital or moving to another home. Here are five lessons to maximise data collection rates learned from previous research studies conducted in care homes in Wales:
1. Involve staff and residents from the planning stages
Patient and public involvement (PPI) is vital for ensuring that the needs of the population are central to the research being undertaken. Involving care home staff and residents from the early planning stages of your study can help identify the research priorities, and the best methods to address the aims of the study. PPI advisors can give useful feedback on recruitment materials, approaches and data collection tools.
2. Keep data collection forms brief
If your study involves staff as participants, be aware that they may only have a limited amount of time available to fill out research questionnaires, and this can be seen as an additional burden to those with an already high workload. Keep the questionnaire packs as brief as possible and prioritise the order of questionnaires within the pack so that the primary outcome measures are earlier on in case the member of staff does not have time to complete the full pack.
The same applies for residents, who may get fatigued by completing overly long questionnaire packs. If data collection is being done by a researcher rather than by self-completion, the researcher should take breaks in the interview if the participant requires them. For research involving participants with cognitive impairment, consider using prompts (verbal or visual) to aid the participants’ understanding of the questions.
3. Pilot the questionnaire packs
Once the questionnaire packs have been designed, pilot them with a number of people, asking for feedback on length, appropriateness of measures and clarity of questions. Piloting can be done with PPI advisors, colleagues, and asking friends and family of a similar age group to your study sample to give feedback on the questionnaire packs. Some redesign of the questionnaire packs may be necessary after piloting.
4. Language awareness
It is important to be aware of the cultural context of research within Wales. Recruitment materials and questionnaire packs should be available bilingually, and participants should be offered the opportunity to take part in the research through the language of their choice.
5. Identify ‘study champions’
In addition to involving staff and residents at the planning stages, continue to build a relationship with key people in the care home who can act as ‘study champions’. Study champions keep the momentum of the research going through encouraging their fellow staff/ residents to engage with the research and complete the questionnaire packs, and informing new staff members/ residents about the study.