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?
- AS (Greece): Emotional support starts with first contact. Treatment teams need to show empathy and engagement to help decrease the patient’s stress and anxiety. The feeling of being personally cared for makes the patient more confident in every step of the care and treatment process, and treatment teams must maintain this throughout that process.
- Patients should be referred to support services earlier; help should be timely and individualized. The impact of cancer is so huge – on home life, family life, employment, that patients need support not only when receiving treatment but also at home to deal with the biggest issues.
- There must be alignment between medical approaches, treatment goals and a patient’s personal situation. Lung cancer support is very complex as patients can have different perspectives about their lung cancer.
- Support to help patients with physical exercise is also important, as this assists their mental health; our service offers online Pilates sessions to help with this.
- CC (US): Teams should ensure that they assess patient’s needs – and keep reassessing their needs throughout their care and treatment, not just at the beginning, or only during metastasis. Support should be individualized, thoughtful, compassionate and must take into account diverse issues, including the cost and geographical distance of available help which can be a deterrent. Patient support must be accessible and sustainable. It can be difficult to streamline individual care involving the support for patients, and their family and friends. Depending on if the patient is being treated at home, in a private setting, or service from an agency, those providing help also need help themselves, but those messages seeking support can get lost.
- LD (UK): Support needs to have perspective about the patient’s situation. The impact of lung cancer can be so big that support needs to personalised and should be driven by the patient’s diagnosis.
- BC (South Africa): Patient support must always be individualized; it must be remembered that support, where it exists from the families and close friends is there all the time – compared to that provided by health care providers. .
- LA (Bulgaria): In 2010 our service created a standard for non-medical care for lung cancer patients. According to this standard, consultation rooms for psychologists and social workers should be next to patient treatment rooms, so they can very easily access emotional support. Support should focus on engagement, timeliness, and personalization.
Question 1 – key points:
• Patients should be referred to support services early in their treatment.
• Support should be tailored to meet the needs of the individual, be dictated by their personal circumstances and by the treatment they are receiving.
• The support needs of patients should be continually assessed.
• 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 patients now do more of their own research about lung cancer using the internet?
• 3c Is stigma attached to patients 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 your 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 patient’s 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 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.
