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Social Media Support: 7 Ways to Respond Effectively, and Why Our Responses Matter
Monday February 15, 2021
How we respond to one another in retinoblastoma support forums, and the information we share, can significantly impact patient care and outcomes. Abby White shares 7 ways we can respond positively to any social media request for help, to improve communication, support, and best care for the child/survivor and family.
In the modern age of social media networking, how we respond to one another in retinoblastoma support forums can significantly impact patient care and outcomes.
The shared experience of childhood eye cancer bonds us together, and we are keen to help one another forward, to ease suffering and guide through the best possible care. But if we lack crucial understanding and knowledge of the individual’s situation, we may cause more harm than good, for the child or survivor, and their entire family.
In Part 1 of this article, we looked at real interactions that occurred on social media, and key issues arising from them. These interactions clearly show that pausing to ask questions and gather information is vital to understand circumstances, risks and needs before we respond.
So what can we do to ensure our interactions encouraging and helpful?
Below, we share 7 ways you can respond positively to any social media request for help, to improve communication and support.
Google and social media play an increasingly significant role in the lives of families affected by retinoblastoma, but without careful use, they can complicate a child’s medical care and even put their life at risk. This blog was written by Jesse Berry MD, Ocular Oncologist who cares for children with retinoblastoma at Children’s Hospital Los Angeles. She shares recommendations for being a safely informed parent advocate in the modern hyper-connected age.
2. Link to the One Rb World Map
The One Retinoblastoma World map brings together details of specialist treatment centres around the world, including the number of patients they treat, different medical disciplines on the team, available imaging and treatments, and contact details. Some well-established treatment centres are not included on the map as they have not submitted their data.
The map enables families to identify experienced treatment teams that are geographically and medically most appropriate for their individual circumstances. Please share this valuable reference tool when families are actively looking for retinoblastoma specialists.
3. Learn About Retinoblastoma Around the World
By understanding more about retinoblastoma awareness, medical and supportive care in diverse countries, we are better equipped to respond appropriately when we meet families in our global online village. This is especially true when communicating with families from developing countries.
There are significant challenges to medical care in low- and middle-income countries, but knowledgeable doctors and appropriate life-saving treatments are available in most, despite limited resources. The major challenges to survival are late diagnosis, limited emotional support for parents to accept timely life-saving enucleation, and poor financial and family support to access and comply with months or years of therapy.
It is natural to avoid thinking about these challenges, but when we do so, we cannot help. When we educate ourselves, we can understand a family’s circumstances and needs more deeply, and respond with greater care and value. We can reflect on the implications of international travel for treatment, and link to useful resources, or simply respond with words of love to support the mental wellbeing of the entire family.
Rati’s ancer could have been cured in Botswana, but her diagnosis and treatment were delayed due to lack of awareness among medical professionals and and poor family support. International care came too late to save her life, but she created a legacy in WE C Hope to help other children around the world.
4. Learn About All Types of Retinoblastoma and its Different Treatments
Retinoblastoma presents in different ways and combinations (unilateral, bilateral, intraocular, extraocular, trilateral; non-heritable, familial, new heritable mutation, mosaic, one child or more…). A wide range of treatments are used depending on the size, number and location or tumours, whether one or both eyes are affected, and risk to the child’s life. Diverse knowledge allows us to better understand and support families whose experiences differ from our own.
WE C Hope provides an extensive Retinoblastoma Resource explaining the different types of retinoblastoma, its treatments, their side effects and risks. Please take time to learn about the range of possible diagnosis and treatment experiences, especially those that differ from your own. Please consider sharing the Rb Resource or specific pages with families who seek information about diagnosis, treatments, genetics or other aspects of retinoblastoma.
5. Recognise the Difference Between Your Experience and Your Opinion
There is a fine line between opinion and experience, but it’s an important one to understand to provide great support in our online retinoblastoma community.
Opinion is an individual’s perspective about something or someone. It is a personal belief, view, idea, feeling or judgement. An opinion may be reached based on fact, logic, misinformation, assumption, other related opinions, personal experience, fears, emotions, judgements, and mind-set, or a combination of these. Opinion is very subjective and may be right or wrong.
Experience is the process of acquiring knowledge or skill from doing, seeing or feeling things. Experience itself is neither good nor bad; it is interpreted by the individual according to their personal mind-set. An experience may or may not have been the right one for the situation, but it is always factual and can only be shared by the people who have lived it.
This is how opinions and experiences can play out on social media:
Opinion: “Do X treatment, It saved our kid’s life and sight. Avoid eye removal if you can.”
Experience: “Our child was diagnosed with X stage of Rb and we did Y treatment. We had Z experience with it and we had X outcome. She is Y today.”
Here, the responder’s opinion makes a potentially very dangerous assumption that the child’s life is not at risk, and an incorrect statement about saving life – if tumour is contained in the eye, making eye-salvage possible, life is NOT at risk. Parents hear what they want to hear – this response may be enough to convince the family to ignore medical advice to enucleate. The child may die as a result – especially if the responder has not identified where the family lives, and possible issues of access to care.
In contrast, the experience presents a particular treatment through the respondent’s personal story. They include the stage of diagnosis so the enquiring parent can put the story in context and compare it to their own child’s situation. They give details of their treatment experience and the outcome, and end with encouragement. That gives the enquiring parent much more information, hope and space to ask more questions if they wish.
Opinion: “You must go to X center, Y is the best doctor.”
Experience: “We had all our care at X center and found Y to be an excellent doctor because Z…”
Here, a particular hospital and doctor is named in both responses. However, the opinion gives no reasoning. There are many excellent hospitals treating retinoblastoma, and X centre may not be appropriate or accessible to the enquirer. In contrast, the experience provides information in a friendlier tone.
Before publishing, consider whether your comment is an opinion or experience. Do you need to edit to ensure your personal experience is relevant to the conversation, to maximise its value to the individual?
Share your experience to help others understand what they can expect and what their options may be. Your insight through living with retinoblastoma will complement the information and recommendations given by the child’s doctors.
Save opinions for potent discussion about specific topics on retinoblastoma care. Join and start conversations on the WE C Hope Facebook Group and other forums specifically to debate the topics important to you. Together, we can learn from one another, and the medical and research community can learn from us.
Parents, survivors, and medical professionals discuss challenging subjects during a breakout session at One Rb World 2017 in Washington D.C., USA.
6. Get to Know the Families You Talk With
Few families or survivors give all pertinent information when asking a question or requesting support. They may not think to include it, may be uncomfortable about disclosing it, or may not realise the relevance to their query. Or they may deliberately withhold certain information, already knowing or suspecting the answer, while hoping for a different response.
Before you make suggestions, find out where the family lives and what they are really looking for. Ask questions to gather information. Take time to understand the situation more clearly so you can discern the best response.
7. Be a Supportive Response
Parents and survivors the world over experience the same emotional reactions to retinoblastoma and are desperate to connect with others for support. A statement like ”please help” or “I need advice” often means “my heart is broken, I’m very scared and I need your love, reassurance and encouragement” – but it’s hard to share that emotional need with strangers on a social platform. We feel less vulnerable when we wrap the request for support in an appeal for information or advice, or a vague plea for help.
Compassion and encouragement may be what that new parent or survivor truly seeks. To know that others witness their pain, understand it, and stand in solidarity with them. To know they are not alone.
Invest time in real conversation to get to know the individual, so you can provide valuable information, advice and compassionate support that is specific to their situation and needs. If you don’t have relevant information to offer, but you want to help, tell them you are thinking of them and send your love and prayers. It’s perfectly OK to not give information, and simply BE with that person in their experience. Words of genuine care are hugely powerful in dark times – human solidarity helps keep the candle of hope alight.
Read Part I of this article to uncover the outcomes of real social media interactions, and key points to consider when discussing retinoblastoma with other parents and survivors.
About the Author
Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.