Annex A: Topic guide used for BME carers, young carers, elderly carers, and carers in paid employment
Generic Topic Guide for Focus Groups
Part One - Introduction (15 Minutes)
The facilitators to introduce themselves and explain that they are from OPM, a not-for-profit organisation that specialises in work with the public sector and which aims to improve the way public services are developed and managed to ensure better social results. Explain that a large part of our work that we do involves listening to the views of service users and the public in order find out their views and to inform the improvement of services.
Explain that Scottish Executive has asked OPM to undertake this project and consult with carers and carers organisations on the future needs of carers and how services might need to change over the next 10 years to meet their diverse needs. Explain that as well as working with carers, the project also involves soliciting the views of voluntary and statutory organisations that are involved in providing services for carers and those who are cared for. In addition, explain that the Scottish Executive is interested in the experience of BME carers and that this is an integral part of the project as well as a core component of the National Care Strategy.
Explain what we have found so far from the literature review and the survey about the kind of issues that have emerged and the kind of support informal carers see as a priority and the concerns about the longer term (These to be mapped on a flip chart as prompts for Part One of the Focus Group Discussion, e.g. co-ordination of care services; availability of support; the provision of information; the effectiveness of policies to support carers, e.g. respite care, flexible working policies - see below). Then go on to explain why we are here in relation to the issues that have emerged and the objective of the Focus Group exercise which is to elicit views on different aspects of services for carers looking principally at:
- What in your experience works well
- What in your experience does not work well
- What in your view needs to be improved and how
- Identifying areas where you perceive that there are gaps
- How you see the future for yourself as a carer over the next 10 years
- What you would like to see in place to support you as a carer over the next 10 years
At this point, ask for questions on points of clarification.
Timing and other issues
- Discussion group will last for 1 hour and 30 minutes
- Respect for everyone's views
- Allow people to speak without interrupting
- Ask for mobile phones to be switched to vibrate if possible
- Breaks to use the facilities, recharge etc
- Right to withdraw at any time
- Assurances of confidentiality
Part Two - Storytelling (30 minutes)
Paired discussion - grouped around specific themes arising from literature review, around the following themes for example (to be written up on a flip chart for the facilitator and members of the group to refer to as a prompt/guide to the discussion)
Type of care experience ( e.g. strokes, cancer, mental illness)
Co-ordination of care services ( e.g. description of care journey between primary and secondary care services and experiences of support services at different stages, e.g. diagnosis, treatment, after treatment, barriers to care, where things work smoothly, where they do not and reasons why they do)
Specific issues in relation to BME carers (meeting the needs, cultural barriers to accessing care services, specific focus on religious beliefs and provision of care services, religious/cultural practices, also religious/cultural practices when the person cared for dies)
Provision of information ( e.g. carer views on information and communication, written/verbal on becoming a carer, during, adequacy of information, timeliness, appropriateness, clear/understandable, literacy and language issues, assistance in understanding)
Effectiveness of policies to support carers ( e.g. respite care, availability of care breaks)
Employer based support for carers ( e.g. flexible working policies, availability of care breaks, impact of flexible working on earnings, progression, career trajectory, pay differential between male and female carers and contribution to the pay gap, career prospects for young carers, representation in employment sectors, influences on full and part time working)
Education (experience of being a young carer, impact on education and employment prospects, impact of caring on opportunity to participate in learning/life-long learning/returning to the labour market after caring responsibilities come to an end)
Spiritual support/Social support/Psychological support ( e.g. whether spiritual/social/psychological needs of carers are recognised as well as considered by service providers)
This stage to involve groups of carers in pairs telling their individual stories about their experience of being a carers, how it feels to be in the shoes of a carer, the needs of a carer, the barriers faced by carers, how these are overcome, the impact when they cannot be overcome, what is an ordinary week in the life of a carer, what makes it a good week or not a good week, how likely the current situation is to improve or become worse in the future. During the storytelling, the other participant should log the key points of the story and then the roles should be reversed.
Feedback - 2 minutes per participant (maximum of 12 participants per group) and structured on a flipchart by the facilitator in terms of the issues identified above.
Part Three - Futures Exploration (30 minutes)
In this session, participants will work in groups of 4. It will involve a series of vignettes customised to each focus group. This will provide the context for a discussion about the future needs of carers, and given their current experiences detailed in Part two above, how this impacts on their future/how they perceive their medium term and long-term future as carers. The focus will be on how they as carers see themselves in the next 10 years, and what in their experience needs to be considered/change over the next 10 years in terms of support services for carers.
Feedback - 3 minutes per group and structured on a flipchart by the facilitator.
Conclusions (15 mins)
Opportunity for participants to raise issues in relation to the study and their experiences that were not covered above, or points that they would like to reiterate.
Thank you to participants for their contributions and payment of incentives