Around 1 in 5 people diagnosed with cancer in the UK take part in a clinical trial.
A study looking at the relationship between doctors, nurses and parents of children with acute lymphoblastic leukaemia (ALL) (Rapport study)
This study collected information about the relationship between doctors and nurses, and the parents of children with acute lymphoblastic leukaemia (ALL). The researchers wanted to find out what parents thought about the relationship they have with their child’s doctors and nurses. This study was supported by Cancer Research UK.
The researchers collected information by recording consultations between parents and their child’s doctors and nurses. They also interviewed parents, doctors and nurses.
The aims of the study were to understand more about
- The needs of parents of children with ALL, and how these change over time
- The relationship and communication between parents and their child’s doctors and nurses, and how this relationship changes over time
- The doctor’s and nurse’s goals in their relationship with the child’s parents
The researchers hope that the information from this study will help improve the care for families of children with leukaemia.
Summary of results
This study recruited
- 43 families with a child aged between 1 and 12 who had been diagnosed with acute lymphoblastic leukaemia (ALL)
- 34 doctors, nurses and play staff
The research team interviewed most of the families 3 times – at 6 weeks, 6 months and 12 months after their child had been diagnosed. They interviewed 28 of the 34 staff twice, and the other 6 once. They also recorded 32 hours of consultations with doctors.
Here is a summary of the main findings.
1. The child usually attends the appointment with the doctor. This is good for helping the child to feel included, but can cause problems for the parents. They found it hard to concentrate on what the doctor was saying, and hard to talk about some issues. The research team concluded it was best to offer separate consultations with the parents, especially when there were new or complicated issues to discuss, such as changes to treatment.
2. Parents valued the doctor’s expertise and commitment, often more than their ‘surface’ communication style. It helped them feel reassured and comforted, and to feel that their child was in ‘good hands’.
3. A good relationship between parents and doctors was often instant, rather than being built over time, although there were a few parents who took time to trust the doctor. And the emotional connection with the doctor didn’t seem to depend on whether the doctor discussed emotional issues or not.
4. Some parents found it helpful to talk about their emotions, and some didn’t. Those who did almost always preferred to talk about their feelings with nurses, close friends or parents of other children with leukaemia rather than doctors. Parents generally preferred doctors to concentrate on clinical care rather than discussing feelings. Current communication training strongly encourages doctors to explore emotions. But the research team felt the need for this should be assessed for each family individually and that the training for doctors might need to be changed.
5. Some parents felt that the relationship between themselves and the nurse, the child and the nurse, and the child and the doctor were more important than their own relationship with the doctor.
6. The relationship that parents have with doctors and nurses has sometimes been described as a partnership. But the research team think it is different to a partnership. Above all, parents needed to feel they could rely on doctors and nurses through the good times and the bad times. The relationships parents had with the doctors and nurses helped them remain hopeful. Most parents found that concentrating on short time frames also helped them to be hopeful. Hope was very important to parents taking part, and they wanted doctors to help them be hopeful for the future.
7. Parent's felt their emotional needs were met in different ways by different people in the medical team. The research team found that the doctors tended to focus on the medical information, and the nurses tended to focus on the psychological care. They concluded that the team worked well together to address parent's needs.
8. The research team also looked at how doctors recruited children onto clinical trials. Doctors said they wore two hats when explaining clinical trials to parents. One was as the trial doctor, and one was as the doctor caring for the child. They described the trial both in terms of a scientific study, and as a way of offering different treatment. Most parents understood what was involved with the trial.
The research team plan to continue looking at the results, and hope to publish more information about their findings at a later date.
We have based this summary on information from the team who ran the study. The information they sent us has been reviewed by independent specialists (
How to join a clinical trial
Dr Bridget Young
Cancer Research UK
National Institute for Health Research Cancer Research Network (NCRN)