Report from a global psychosocial virtual focus group
Introduction
A virtual focus group consisting of individuals who provide psychosocial care in five GLCC member countries/regions was held July 13, 2023.
Facilitated by CancerCare social worker Charlotte Ference with the aid of Evoke Incisive Health, the discussion focused on four main questions, with additional questions raised during the meeting.
- What does good practice in emotional support look like in your service/ country?
- How should emotional support be provided?
- What are the challenges in your service/country providing effective emotional support?
- What needs to be done in service/country to overcome the challenges?
This report summarises insights shared during the discussion and highlights key points. Please note: participant’s answers have been summarized and may or may not reflect their exact words and phrasing.
Participants
| Country | Initials | Role/title | Organisation |
| Bulgaria | LA | Patient Navigator | National Patients Organisation |
| United States | CC | Lung Cancer Manager & Clinical Supervisor | CancerCare |
| South Africa | BC | Social Worker | Charlotte Maxeke Johannesburg Academic Hospital |
| Greece | AS | Volunteer | FairLife Lung Cancer Care |
| United Kingdom | LD | Information Director | Roy Castle Lung Cancer Foundation |
Discussion Questions
1. What does good practice in emotional support look like in your service/ country?
| Question 1 – key points:
o Patients should be referred to support services early in their treatment. o Support should be tailored to meet the needs of the individual, be dictated by their personal circumstances and by the treatment they are receiving. o The support needs of patients should be continually assessed. o Patients and their loved ones also need support at home. |
2. How should emotional support be provided?
| Question 2 – key points:
· Providing emotional support for patients should include support for a wide range of needs and activities, including physical health, nutrition, individual counselling, legal rights and support lines for patients to be receive help and advice · Psychosocial support should also be available for caregivers and families, including bereavement counselling · Services must ensure patients have all the necessary information they need at all stages of their lung cancer journey about the emotional support available to them, including when and where that support is available · Psychosocial support should be embedded within patients’ multidisciplinary treatment teams |
3. What are the challenges in your service/country providing effective emotional support?
- 3a How has the pandemic affected the availability of psychosocial support?
- 3b Do Ps now do more of their own research about lung cancer using the internet?
- 3c Is stigma attached to Ps who receive emotional support for lung cancer?
| Question 3 – key points:
· There are often insufficient resources available in different countries to support the required level of emotional support services that lung cancer patients need · Where services are limited, those that are free can often have long-waiting lists · Patient awareness of emotional support services can be low · Treatment services sometimes do not appreciate the need to provide psychosocial support or give sufficient information to patients about the support available to them · Some older patients can be less likely to seek emotional support, whereas younger patients can be more willing to ask for it · There is a lot of stigma attached to lung cancer and smokers in particular, which can affect patients’ willingness to seek support · In the US, access to support is often restricted by licensing conditions, meaning patients can only access help that is available in the state where they live · The Covid-19 pandemic greatly increased the number of digital support services available for lung cancer patients, such as online services and remote meetings and consultations; this level of digital support has continued after the pandemic |
4. What needs to be done in service/country to overcome the challenges?
| Question 4 – key points:
· Psychosocial support needs to be targeted at the needs of individuals, and not reduced to simplistic questions about whether they feel depressed, etc. Instead patients should be asked about their individual needs. · Support needs to be available early, from a patients’ diagnosis, right through their treatment journey · Patients need to have access to good quality, reliable and timely information about the support services available to them · Healthcare professionals need training in the emotional needs of patients and how to provide it, this should be included in the training they receive at college and university · Improved therapies and treatments mean that lung cancer patients are living longer lives, but they also need the right support to help them better lives
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