What do people do in the aftermath of healthcare-related harm? A qualitative study on experiences and factors influencing decision-making.

Objectives: To capture experiences of people self-reporting harm and contrast responses and actions between those who do or do not take formal action.

Design: Semi-structured qualitative interview study.

Setting: People self-reporting harm experienced in the National Health Service (NHS) or their family/friends identified from a general Great British population survey.

Participants: 49 participants.

Results: There were commonalities in experiences after harm whether formal action (including making a formal complaint or litigation) was taken or not. Many participants reported raising concerns informally with NHS staff, trying to access explanations or support, but were usually unsuccessful. Decision-making on action was complex. There were multiple reasons for not pursuing formal action, including fears of damaging relationships with clinicians, being occupied coping with the consequences of the harm or not wanting to take action against the NHS. NHS advocacy services were not regarded as helpful. Knowledge of how to proceed and feeling entitled to do so, along with proactive social networks, could facilitate action, but often only after people were spurred on by anger and frustration about not receiving an explanation, apology or support for recovery from the NHS. Those from marginalised groups were more likely to feel disempowered to act or be discouraged by family or social contacts, which could lead to self-distancing and reduced trust in services.

Conclusions: People actively seek resolution and recovery after harm but often face multiple barriers in having their needs for explanations, apologies and support addressed. Open and compassionate engagement, especially with those from more marginalised communities, plus tailored support to address needs, could promote recovery, decrease compounded harm and reduce use of grievance services where other provision may be more helpful.