Background End of life care need is increasing and will continues to do so. Government policy is for terminal patients to receive care and die in their preferred location. Most terminal patients prefer to receive care and die at home, but lack of palliative care funding places a substantial burden on informal carers. Inequalities exist in end of life care; informal carers from socioeconomically deprived areas suffer from worse physical and mental health, inequitable service provision and worse service experience, and feel greater financial and social pressures due to caring. Halton and Knowsley – in North West England – are among the most socioeconomically deprived Local Authorities in England.
Method Eight semi-structured individual interviews were conducted with previous informal carers from Halton and Knowsley (caring ended between six months and 12 years prior to interview). Interview recordings were transcribed and analysed inductively, generating themes that arose during interview.
Results Informal carers face numerous challenges during caring and bereavement. Participants were unequivocal in their view that there is not only a pressure, but an expectation that family provide care for terminally ill relatives. Lack of communication from, and between formal care and healthcare professionals left carers feeling isolated and unsupported in providing home end of life care. Patient comorbidities and a system sometimes failing to take responsibility for patient care, impacted on the quality of care received and resulted in carers feeling a loss of control over their situation.
Conclusions This research suggests a more flexible, accountable and better-funded community end of life care system could improve the situation for terminally ill people and informal caregivers. It is also suggested that more research into the costs of providing informal end of life care would illuminate the pressures faced at this highly pressurised time.
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