TableĀ 5

Key themes about acceptability and feasibility from the interviews with participants and carers

Feasibility and acceptability of participation
  • Most people enjoyed taking part in WIELD and would recommend it to others.

  • Most people understood the need for random allocation and accepted this was part of the study.

  • Study information explained the study well and was suitable for most participants.

  • Study visit went well and everything was explained clearly.

Feasibility and acceptability of data collection methods
  • Completing the questionnaires four times was fine for most people.

  • Most participants were involved in completing the questionnaires.

  • Most people felt that the questions and language were clear but there was some room for improvement.

  • Postal questionnaires were fine for most people but it would be helpful to have options to complete the questionnaire online, on the phone or at a visit.

  • Some carers and participants sometimes found it challenging to find the time to complete the questionnaires.

  • Some people completed the seizure diary but others did not.

  • Some people thought the questionnaires were quite long but this was not a problem for most people.

  • Specific questions could be difficult to answer.

Use and acceptability of the booklet
  • A minority of carers and participants were already familiar with Beyond Words.

  • Most participants engaged with the booklet and could identify benefits.

  • Control participants had differing views on the booklet after first looking at it.

  • The booklet was used in different ways.

Feasibility of routine use of the booklet
  • Mixed feelings about level of support needed to use the booklet.

  • Need to be aware if person with learning disabilities is anxious as the booklet could make this worse.

  • The booklet could be implemented in the health and social care system.

  • The booklet could be useful for other people with epilepsy.

  • The booklet is useful for people with difficulties with verbal communication.

  • The booklet may be most useful when someone has just been diagnosed.

  • The booklet may be particularly helpful to explain epilepsy to others.

  • The time needed to use the booklet could be a barrier.

  • WIELD, Wordless Intervention for Epilepsy in Learning Disabilities.