‘Thinking Family’ when an adult has a serious illness
By Dr Louise Dalton and Dr Elizabeth Rapa of Oxford's Department of Psychiatry.
Every day, thousands of parents and grandparents are diagnosed with serious health conditions such as cancer, lung or heart disease. They are then faced with the unenviable task of sharing this information with the children they love.
Research has shown that effective communication with children about parental illness has long term benefits for children and their family’s physical and mental health. These include better child psychological well-being, as well as lower reported symptoms of depression, anxiety and behavioural problems. It also has benefits for parental mental health, adherence to treatment (such as following the prescribed drug regime) and family functioning.
However, adults find sharing a diagnosis with children one of the most difficult experiences. Understandably, they want to protect children from distress and many feel uncertain about whether children need to be told, or when and how to navigate these sensitive conversations. Yet, children are “astute observers” and are often acutely aware of changes within the family. Silence about what is happening risks children misinterpreting the situation and worrying alone, without access to the emotional support they need.
Previous research has found that patients want help from their clinical team to think about what, how and when to share their diagnosis with children, or how to answer questions such as “Are you going to die?” – but often report finding this support difficult to find. However, few studies have asked healthcare professionals about how they perceive their role regarding the needs of patients’ wider families. A team from the Department of Psychiatry interviewed 24 NHS clinicians from different professional backgrounds and working across a range of specialties to find out more about their views and experiences regarding the needs of patients’ children.
Our latest study, published in PLOS One, found that although patient’s family details were often recorded, this information was not routinely used to help patients share their diagnosis with children. In other situations, patients’ relationships with children were rarely or never identified.
The NHS healthcare professionals who took part reported feeling uncertain about asking patients about what children understand. They feared that they would make the situation worse or upset their patients.
“What can I say, what if they are in pieces, what do I do with that at that time of day? It seems a bit crass to enquire about something you aren’t in a position to help with.” GP
“Your worst fear is saying the wrong thing” Oncology
It was also frequently assumed that someone else in the clinical team would talk to the patient about their children, but often this meant opportunities for these conversations were missed.
“How that is dealt with, I am not really in the loop. […] So you don’t really know what happens to those children in terms of who says what to them. Someone might, but not me.” Surgery
Because you are talking to them [adult patient] directly, you tend to leave it to them to approach that [talking to their children]. Not that that is necessarily right, but it is the way it tends to happen.”
Others recognised their vital role and the importance of “thinking about the children and the family as whole” and being honest about the reality of the patient's situation.
“Don’t ever tell your child an untruth, don’t say ‘It’s all going to be fine, I am going to live forever’. Be truthful.” Neurology
While acknowledging the multiple demands on healthcare teams, the authors recommend a culture shift in recognising that talking to children about their parent's illness improves family relationships and mental health. Sharing patients’ desire for support from their clinical team around these issues may reassure healthcare professionals that initiating a conversation about children will be welcomed. Indeed, clinicians can play a key part in reassuring and guiding families to open up this sensitive topic with children. Working in partnership, healthcare professionals and families can protect the psychological well-being of children who are affected by the illness of an adult they love.
This is an important area to get right and a programme of research led by Dr Louise Dalton, Dr Elizabeth Rapa and Professor Alan Stein focusses on facilitating family centred conversations with clinical teams in every discipline. The team are currently developing a resource for all healthcare professionals to help them identify children who are important to their adult patients irrespective regardless of their patients’ diagnosis or age. This will be freely available to everyone and show professionals how four short steps during a consultation could have huge benefits for their patients and loved ones, with a lasting legacy for children’s psychological wellbeing.
The study, 'Exploring healthcare professionals’ beliefs, experiences and opinions of family-centred conversations when a parent has a serious illness: A qualitative study', can be read in PLOS One.