Organ transplant aftercare and support in Scotland Transplant patient survey report

5. Emotional/psychological support

This section explored what emotional/psychological support transplant recipients and their partners/family members needed; what they received; what was most helpful and what type of support should be available in the future.

Firstly, respondents were asked to rate the support they had received from the healthcare teams at different stages of their transplant journey. They were asked to score whether their emotional/psychological needs were met on a scale of strongly disagree/disagree/neither agree nor disagree/agree/strongly agree or ‘not applicable’.

5.1 Before their transplant, they were asked to rate the communication:

Do you feel that the support you received from the healthcare teams met your emotional/psychological needs before your transplant:

• Support from the local referring team during the referral process
• Support from the transplant team
  • when being assessed
  • when on the waiting list

Do you feel that the support you received from the transplant team met your emotional/psychological needs after your transplant:

• In the first year
• From the end of the first year until the present day

Do you feel that the support you received from your local referring team met your emotional/psychological needs after your transplant:

• In the first year
• From the end of the first year until the present day

Before transplant, over 60% recipients reported that their emotional/psychological needs had been met by their local referring team and over 70% by their transplant team. A small number (6 – 9%) gave feedback that their needs had not been met, although some may have had their needs sufficiently met by one team and so not needed support from the other.

After transplant, 72% respondents felt that their transplant teams had met their needs during the first year, falling to 62% after this period. Support from the local referring teams scored less highly, with 52% reporting that their needs were met in the first year and 46% after the first year until the present day.

Around 10% respondents felt that their needs were not met after transplant by one or other healthcare team or from other sources.

Next, respondents were asked about the sources of support they received, which ones they found most helpful and their preferences for ways of receiving support. Eight potential sources were listed and respondents were asked to tick all those that applied. Over one thousand responses were received, indicating that some people ticked more than one option.

5.2 What were your main sources of emotional/psychological support (apart from your family and friends)?

Number of responses

Transplant coordinators/specialist nurses 388

Other members of the transplant team 258

Peer (someone who has had a transplant) 148

GP 109

Clinical psychologist 77

Charity group 40

Psychiatrist 33

Counsellor 28

The results showed that the two main sources of support were transplant coordinators or specialist nurses, and other members of the transplant team. Peer support (from someone who has received a transplant) was also ranked highly, as was support from GPs. Feedback showed that support from clinical psychologists, charity groups, psychiatrists and counsellors was not used as often.

5.3 Please tell us if you received emotional/psychological support from any other source?

When asked if they had received emotional/psychological support from any other source, 99 comments were received. Many praised the care and emotional/psychological support they had received from NHS staff. Others commented on the positive role played by fellow patients, third sector and transplant groups on social media, and their own faith or spiritual beliefs. Some commented on the lack of emotional/psychological support and their difficulties in accessing mental health support.

5.4 How would you have preferred to have received emotional/psychological support?

Seven different ways of receiving support were listed, and respondents were asked to rank these in order of preference, where one was the most preferred and seven was the least preferred option. The options given were:

• Face-to-face/one-to-one
• Face-to- face/in a group
• Telephone or video/one-to-one
• Telephone or video/in a group
• App or web-based self help
• App or web-based guided by a professional
• Written materials e.g. leaflets

This question was answered by 150^[1] respondents, with 76% giving their first choice as face-to-face/one-to-one. Group sessions were less popular and the least preferred option was written materials.

5.5 Do you have any comments about what would have improved your experience?

One hundred and two comments were received. Many felt that some form of psychological counselling, both pre and post-transplant, would be beneficial and noted that mental health support was difficult to access. Some raised the benefit of peer support and others commented on the lack of support for family members or carers.

5.6 Summary

The results strongly endorsed the emotional/psychological support provided by transplant coordinators, specialist nurses and other members of the transplant team.

Support from peers and from GPs also plays an important role and respondents expressed a strong preference for face-to-face/one-to-one support.