Navigating the emotional landscape of volunteer–patient interactions

When a volunteer supports a patient, a special and often rather unequal relationship can develop between the helper and the person receiving the help. Researchers have now investigated this relationship and offer guidance on finding the right balance.

When people get sick, they often depend on family or friends to help them out. In Norway, there are also public services that usually support people who need it.

But public services or family and friends are not always enough. Volunteers and non-profit organizations are increasingly being used to provide care to the population."

Gunhild Tøndel, Associate Professor, Department of Sociology and Political Science, Norwegian University of Science and Technology

It is not that surprising. An increasing proportion of the population are elderly people, and there are more and more people requiring care. The pressure on the public healthcare system is increasing – and on the people who are still able to work.

"In the future, public services, family and social networks will increasingly struggle to meet the care needs," said Tøndel.

Volunteers provide a range of benefits

A lack of hands is not necessarily the main reason why volunteers are attractive helpers. There are probably things you do not really want to talk about with the people closest to you. Serious illness can cause symptoms and consequences that many people find it easier to talk about with strangers.

For example, someone who becomes seriously ill may want to talk to someone who has experienced the same challenges, and some volunteers have this type of experience.

Studying volunteer and patient experiences

Intimate disclosures, however, can create a situation that leads to an unusual and imbalanced relationship between the person helping and the person being helped. The relationship between a volunteer and a patient really shouldn't be a friendship.

"We wanted to study volunteers' experiences, how they are supported, and at the same time how patients experience the help," said Professor Aksel Tjora at NTNU's Department of Sociology and Political Science.

The Sociology Clinic, an independent working community of sociologists with a background from NTNU, was commissioned by the Norwegian Cancer Society to look into this. They have now presented their findings in the Norwegian Journal of Welfare Research.

The researchers conducted in-depth interviews with nine volunteers from the Norwegian Cancer Society's 'helping hands' programme and six patients who had received help. The aim was to see how the relationship between the helper and the person receiving help developed.

"The relationship involves useful assistance, but it can also create unclear expectations where one party views the relationship differently than the other," says sociologist Maja Joner Ognedal at the Sociology Clinic.

Lots of tasks, but not a friend

The Norwegian Cancer Society's goal regarding the volunteers' work is for patients to feel a greater sense of security, gain better insight into and overview of the treatment process, and feel that they are coping better with daily life.

"The helping hands volunteers can be conversation partners, find solutions to practical problems, relieve relatives from the burdens of care, provide an overview of appointments related to cancer treatment, and interpret information from public institutions such as hospitals and the Norwegian Labour and Welfare Administration," said the researchers.

Of course, patients have different needs and may require some or all of this assistance, but one thing is clear:

"During their training, the volunteers are taught that they should 'be a volunteer – not a friend'."

How the relationship between the parties develops, however, is still far from certain. This is due to basic human nature.

Being a volunteer often comes with great emotional costs, as well as taking up a lot of time. A volunteer cannot be friends with everyone they help.

Intuitive response to be open

"Most people respond intuitively in social situations. That means our initial response is to meet our fellow human beings without reservation. But in this case, the volunteers must simultaneously balance how much of themselves they invest in the relationship," explained Tjora.

Being a volunteer often comes with great emotional costs, as well as taking up a lot of time. A volunteer simply cannot be a friend to everyone they help. There is not enough time for it, and it is easy to become burned out. That does not benefit anyone. There are not enough volunteers as it is, and we cannot afford to lose them unnecessarily.

If, as a helper, you become a friend, it is not certain that you will be able to hide your emotions if you become worried or overwhelmed, and you should definitely not reveal anything like that to the patient.

In addition, things do not always end well when people get sick. Are you really able to cope with losing friends all the time?

The volunteer–patient relationship often came up in the conversations the researchers had with the helping hands volunteers.

Making it up as they go

"A key topic that comes up all the time is the experience of having to figure out the role they should have in the volunteer–patient relationship. The helping hands volunteers in particular found this challenging at the start of their work," said the researchers.

New volunteers felt that they were having to make it up as they went along when trying to figure out where to set the boundaries. But knowing where to set these boundaries can also be difficult for cancer patients. When do you start talking to a stranger about your experiences, and about feelings that can be difficult?

Some helping hands volunteers found it easy to slip into the role, while others called for clearer instructions on what the role actually involves.

Both the volunteers and the patients had varying perceptions of what the relationship between them should be. Should you primarily be a friendly companion? Someone who carries out practical tasks? Or both?

Here, the sociologists have some advice.

Create clear boundaries

"We propose the concept of 'controlled emotional voluntariness'," Tjora said.

This concept is intended to help people find the right balance between the necessary distance and intuitive closeness in volunteer work, where a close relationship may develop between the parties.

The main point is to make the volunteer organizations aware of how important it is to establish clear rules regarding the volunteers' work.

"Controlled emotional voluntariness involves an ambiguity that characterizes many volunteer roles. This is especially true where volunteers step in over lengthy periods of time to help people in difficult situations with whom they should not develop close and lasting relationships," said Tjora.

The main point is to make the volunteer organizations aware of how important it is to establish clear rules regarding the volunteers' work.

"Clear boundaries must be established. Otherwise, the volunteers may find themselves in an emotional dilemma between what they truly feel and other people's expectations of what they should feel," explained PhD research fellow Lina Naoroz Bråten.

Solutions

The Norwegian Cancer Society has developed solutions, including through its 'helping hands' volunteer training programme and the opportunity for volunteers to ask for guidance along the way.

In addition, collaboration between a volunteer and a patient is limited to six months. According to the Norwegian Cancer Society's guidelines, this is when a volunteer–patient relationship should end anyway.

None of this provides a guarantee, but it does limit the possibility and risk of an imbalance developing in the relationship that might be problematic for both the helper and the person receiving help.

Many of the volunteers would like clearer rules.

"Voluntary work is inevitably emotional. However, the strength and basis of the relationship must be intentional for the interaction to work. The organization must understand the balance between the necessary distance and intuitive closeness. This will help develop this type of volunteer service, including recruitment and supporting volunteers as a scarce resource," the researchers concluded.