Person-centred support may prevent deterioration in people with chronic pain

Chronic pain is one of the most common reasons for sick leave in Sweden and affects health, work ability and quality of life. In her doctoral thesis, Åse Lundin explores how people who are on sick leave due to long-term, non-malignant pain experience their situation and which factors influence their possibilities of returning to work. Through qualitative interviews, a picture emerges of profound suffering, loss of identity and a lack of coordination between different actors. In a randomised study, a person-centred approach was also tested, in which participants received regular conversations and access to a digital health plan. The results show that person-centred support can stabilise self-efficacy and counteract the deterioration that is otherwise common in this group.

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Sick leave described as a prison 

– I had not understood how extensive this suffering is until I heard their stories. They are in pain, they do not sleep, they cannot work or be with their children, and they are heavily affected both socially and financially. One of the participants said that being on sick leave felt like being in prison. It is an enormous loneliness. It is only when you hear these stories that you realise how tough it is. Life shrinks, says Åse Lundin.

The thesis shows that work plays a central role in people’s sense of self. When work ability is lost, identity is at risk of collapsing.

– There is a fairly widespread idea that these individuals might not want to work. I may have been influenced by that myself before. But I have not met a single person who does not want to return. Work is a major part of their identity. Many described deep hopelessness and shame, says Åse Lundin.

The fact that pain does not show up in biomarker tests makes the situation even more complicated. Many describe the constant need to justify themselves to health care services, authorities and employers.

– Many express frustration that they cannot prove their pain. It becomes an invisible disability. They feel questioned almost everywhere. One participant said she sometimes wished she had a serious disease that people recognise, because she believed she would then be met with more understanding. That says something about the extent of the suffering, says Åse Lundin.

Person-centred support can prevent deterioration 

The randomised study shows that a structured person-centred approach can make a difference. The purpose is not necessarily to eliminate pain, but to strengthen the person’s ability to manage daily life.

– We saw that the control group deteriorated in both self-efficacy and sick leave, while those who received the person-centred support remained at roughly the same level. In long-term conditions, avoiding deterioration is often the primary goal. That is also an important effect.

A key aspect of the support was continuity and the opportunity for participants to talk about their whole life situation, not just the pain. For many, this was the first time anyone had asked them to tell their full story.

– Many said it was the first time someone really listened to their entire situation. The conversations could focus on more than the pain. They could talk about who they are, what matters to them and what goals they actually have. That sense of continuity and security meant a great deal, says Åse Lundin.

A fragmented system 

Åse Lundin emphasises that people with chronic pain often find themselves in the middle of a highly complex system involving health care services, employers and government agencies.

– Patients must coordinate contacts with health care, their employer, the Swedish Social Insurance Agency and often several other actors. At the same time, they are dealing with pain and dwindling energy. Everyone is, in principle, striving in the same direction, but we work in silos. We could save considerable resources and reduce suffering if support were provided earlier and in a more coordinated way.