Patients believe they cannot get “optimal” support for coping with cancer without having access to nurse-led charity helplines on top of information routinely provided by the NHS, suggests research.
Researchers said both forms of information source had “distinct and complementary” roles in supporting people affected by cancer, which were viewed as an essential integrated resource.
“This is the first study to meaningfully describe the impact and benefit for people”
For example, they concluded that nurse-led charity helplines helped plug perceived gaps in access to information from healthcare providers, as well as providing extra avenues of expert advice.
The authors of the study said theirs was the first to move beyond simply looking at patient satisfaction with charity helplines and onto an in-depth evaluation of their role and impact.
The study assessed the services run by three organisations – Cancer Research UK, Cancer Council Victoria in Australia and the American Cancer Society.
The three services all used a similar model, with nurse consultants answering queries, noted the study authors. They interviewed 10 users from each of three, making 30 participants in total.
The researchers – representing the three organisations running the helplines in question – highlighted a range of themes that emerged from the interviews.
They noted that factors that prompted initial contact with cancer information and support services “usually related to gaps in information or a particular emotional state”.
“Nurses were reported to listen and sought to understand more than just the clinical context”
Helpline users went on to describe a range of benefits, such as offering an additional point of access to support, clarifying information already given and helping identify new potential support avenues.
In addition, helpline nurses were viewed as “reliable experts, compassionate communicators and sensitive problem solvers” who were able to “listen between the lines” and gave callers the “space to be heard”.
“Notably, the nurses were reported to listen and sought to understand more than just the clinical context for the caller in order to provide most salient and tailored information and support,” said the researchers.
“Nurses helped to reduce worry, fear or burden, through reassurance, normalising or meeting information needs,” they added, with the interaction often leading to “improved confidence and competence” among patients to manage their own health.
The study authors also said participants identified the helpline nurses as a vital addition to the support given by cancer treatment services.
“Participants expressed that optimal benefit cannot be fully realised without the two sources of support being drawn on, integrated and respected,” said the researchers.
Overall, the researchers concluded that cancer information and support nurses acted as “expert navigators, educators and compassionate communicators”.
“The positioning of cancer information and support alongside cancer treatment services aids fuller integration of supportive care, benefiting both patients and clinicians,” they said in the journal Supportive Care in Cancer.
Lead study author Martin Ledwick, Cancer Research UK’s head information nurse, said: “In the past, research into the value of nurse-delivered cancer information helplines have largely focused on user satisfaction measures or describing the subjects covered in the calls.
“This is the first study to meaningfully describe the impact and benefit for people using these services,” he said. “It’s also a good example of how organisations in different countries can work together to perform research into nursing services.”