Table 3 Six synthesised concepts from original and updated meta-ethnography

• Living and waiting

Uncertainty and waiting

Being in limbo—the uncertainty of living with the disease and of the future.

Being in limbo—the uncertainty of living with the disease and of the future.

• Disruption to life and living

• The experience of symptoms

• The experience of diagnosis

Disruption to daily life

The disruption of treatment to the patient's physical functioning, emotions and social life.

Patients experience disruption in all aspects of life because of the effects of cancer and its treatment, beginning with the shock of diagnosis. After diagnosis, life is disrupted physically, emotionally and socially.

• Enduring or moving on

• The diminished self

The diminished self

The temporary or longer-lasting functional, social and existential losses patients experience and the impact of these.

Patients experience temporary or longer-lasting functional, social and existential losses, which can alter their life expectations. The stigma of changed appearance and speech, damaging experiences with health care professionals (HCPs), and perceived rejection by their next of kin contribute to losses.

• Information

• Fears and expectations

• The significance of symptoms

• Explaining HNC to family and children

• Seeking cause of HNC

• No choice – treatment or death

Making sense of the experience

Patients' continual efforts to make sense of cancer and what is happening to them and how they develop expectations about a likely outcome.

Patients' continual efforts to make sense of their cancer and what is happening to them and to help their family - including their children - to make sense of their illness.

• Connection with HCPs

• Communicating the hidden experience

• Connection with family and social network

• Connection with peers with head and neck cancer (HNC)

Sharing the burden

The importance of a supportive relationship with HCPs whose role is crucial in instilling hope, maintaining self-worth and counteracting patients' vulnerability.

Developing supportive connections with family, friends, their wider social network, HCPs and other people with HNC helps patients to cope emotionally and practically with their illness.

• Finding ways to deal with an uncertain future

• Enhanced future

• Coping with dying

• Self-management

Finding a path

Reflects the nature of life beyond cancer. Patients perceive their future as either diminished or changed.

Reflects how patients characterise life beyond HNC. Some limit their focus to the present, living in the here and now, particularly when cancer is terminal. Others perceive their future as either diminished, changed or enhanced. Establishing successful coping and self-management strategies is associated with perceiving a changed or enhanced future.