Table 2 Outline of support group session focus and purpose

1

F2F

Explanations, questionnaires and introductions

✓

Q* SI**

The consent process was completed. Participants were introduced to one another, ‘Ground Rules’ were agreed and confidentiality was discussed. The procedure for joining the conference call was explained and an ‘instruction’ sheet for this was provided. Any questions parents and siblings had were addressed. Pre-intervention questionnaires were completed. Name badge-making and informal games were played, supervised by research assistants, as ‘ice-breaker’ activities. Permission was obtained for a sibling group photo for use by siblings to help them remember ‘who was who’ in particular during the sessions using audio-conferencing to ‘put a face and name to the voice’.

2

F2F

Getting to know each-other

✓

A printed copy of the Ground Rules and the sibling group photo were circulated. Siblings wore the name badges they had made in the first session.

The ‘Human Bingo’ game and the ‘Strengths and Weaknesses’ activities [6] were carried out as ‘ice-breaker’ activities. This stimulated further discussion, mediated by the researchers. Time was taken out from discussion for refreshments and this allowed siblings to chat together in a less structured way.

3

AC

Understanding your brother’s or sister’s illness

✓

Psycho-education was provided by the researchers whereby siblings could ask questions and discuss their brother/sister’s conditions. To facilitate fairness in terms of siblings’ equal participation and opportunity to talk, the researchers used a wipe-board to keep track of which siblings were speaking up. It was agreed that a printed information sheet would be compiled summarising the information on the main common diagnoses discussed and this was posted to each of the siblings.

4

AC

School matters

✓

✓

Any further questions the siblings had about their brother/sister’s diagnoses were addressed. Researchers facilitated discussion around the theme of matters relating to school e.g. getting to school, doing school work including homework and getting on with peers at school. Researchers facilitated a problem-solving outlook to address issues that arose by encouraging siblings to share ideas for addressing challenges they spoke about.

5

F2F

Sharing stories about recreation time

✓

✓

✓

The ‘Time Capsule’ activity [6] was used to facilitate discussion about leisure time. As parents requested feedback on issues that had arisen, it was agreed with the siblings that some key areas would be discussed in general terms with parents after the session. During that time, siblings engaged in ‘free chat’ with each other, having further refreshments, drawing and playing together.

6

AC

Sharing concerns and solutions

✓

✓

✓

The ‘Aunt Blabby’ exercise [6] was used to demonstrate and encourage the siblings’ problem-solving skills and facilitate the sharing of concerns. Having posted out fictitious ‘agony aunt’ letters to siblings prior to the session, siblings took turns to read out their letter(s) during the conference call session and discussed as a group their own experiences and ideas for solutions.

7

AC

Talking about opportunities and thinking about the future

✓

The Dream Cloud exercise was used as a means of siblings considering their aspirations and hopes for the future [52].

8

F2F

De-briefing and farewells and evaluation

✓

Q*, SI**

Group de-briefing took place with the siblings and the ‘Compli-note’ exercise was used as a facilitative tool for them to share positive thoughts about each other [52].

Post-intervention questionnaires were administered to siblings and to parents. The post-intervention SVQ semi-structured interviews were also carried out. Finally, further de-briefing with all siblings and parents took place.