Output details

Designing a questionnaire to gather carer input to pain assessment for hospitalized people with dementia

This research concerns iterative design of a pain questionnaire for use, primarily, with family carers of hospitalized people with dementia to elicit background information about the patient’s pain symptoms. The project stemmed from the collaborating hospital’s desire to improve prescribing for people with dementia, with whom communication can be limited. Published research had shown that nursing staff can mistake pain symptoms for symptoms of dementia (and vice versa). Hence pain symptoms may not be treated adequately. The starting point for the research was a validated care professional’s questionnaire, the Abbey Pain Scale, already in use in the hospital. A questionnaire was developed to gather family carers’ perspective on the questions in the Abbey scale and additional information about the patient’s experience of pain and its treatment. Collaborative working was undertaken between the clinical and design team to generate the questionnaire content, propose and refine its wording, design its format and test its effectiveness. An initial design proposal, a questionnaire booklet, which received positive feedback from potential users (family carers and hospital staff) during development was trialled on wards but failed due to difficulty integrating it into existing hospital procedures. A revision combined the family carer questionnaire with the professional Abbey scale in the same, shared, single-sheet document. Compromises in the presentation of information to family carers were considered essential to ensure integration of the questionnaire into standard hospital procedures, without which the questionnaire could make no clinical impact.The process showed how the requirements of different groups of end users need to be balanced in information design for complex settings. It also emphasizes how design of clinical (or other) interventions should be shaped by appropriate, iterative testing, before clinical impact can be evaluated. Detailed accounts of such process are rarely seen in design or health care literature.