Social Security Experience Panels - Seldom Heard research programme: end of life

Research Methods

This strand of the research sought to explore the experiences of the social security system among two groups - those living with a terminal illness (and their carers) and bereaved people.

The research included eight interviews with a total of 11 participants. Five participants were living with a terminal illness. Three of them also had their partner carers take part in the interviews. A further two people caring for individuals with a terminal illness took part in interviews by themselves. One interview was completed with a participant who had lost their husband to a terminal illness. Research participants were typically either living with terminal cancer, MND or were carers of people living with these conditions. No interviews were conducted with parents of people on the basis of them having been bereaved in other contexts, such as parents of still-born children.

Participant demographics

Eight of the participants were female. The three male participants were all carers who had joined their terminally ill partners for the interview. All participants were aged 40 and over. The majority were over 50 years old.

Participants were based in Glasgow, the Scottish Borders, Falkirk Council and Midlothian. No further demographic information on participants was collected.

Participants were recruited via stakeholder organisations. Most participants were recruited as a result of their relationship with Macmillan Cancer Support or MND Scotland^[1].

Interview method

The original expectation was for research to be undertaken using a combination of individual face-to-face interviews, paired interviews and focus groups with participants sharing similar experiences. Participants all had a preference for individual interviews for privacy.

Interviews were carried out between January and March of 2020. Fieldwork was halted in March 2020 in line with restrictions associated with the COVID-19 pandemic. Interviews were conducted by an independent research company, KSO Research Limited, commissioned by the Scottish Government. Interviews took place in the participant's home, with the exception of one which was in a neutral venue. Interviews lasted between 27 and 65 minutes.

KSO Research Limited did not disclose the identities of participants to Scottish Government researchers. All participants consented to participate after having been informed of their rights, including those relating to data protection. A £20 gift voucher was offered to thank people for their time.

Research Questions

The research was designed to help shape the new Social Security Scotland ensuring that it is built around people's needs. The interviews explored participants' experiences of and views on accessing benefits following a terminal illness diagnosis or being bereaved. This included questions on:

• Respondents' experience of the benefit system historically and in the current circumstances
• How they found out about benefit eligibility
• How they applied for benefits and their views on the application process
• Any support they had received to access and navigate the benefit system
• Any challenges encountered when trying to access benefits and views on where improvements could be made

Limitations

As participants were recruited through support organisations, their experiences may differ from those who do not access support from the third sector or other similar organisations. This should be kept in mind when interpreting the findings and considering how widely they apply to people facing terminal illness or bereavement.

Quotations

The Scottish Government research team received summaries of interviews from the research contractor rather than full verbatim transcripts. Where quotation marks are used in excerpts ("…"), this indicates direct quotations of participants. All other text included in excerpts represents the summarised note taking of the interviewer as below:

The wider support given by MND Scotland was praised and the couple felt that this was their main source of support moving forward:
"They've taken the pressure off a bit and they can also give us a heads up of what we can expect."
[Individual with terminal illness and their carer]