Complex home care: challenges arising from the blurring of boundaries between family and professional care

Abstract

Over the last 50 years, increasingly complex care (such as tracheostomy management, dialysis or enteral feeding) has shifted from hospital to home, with a concomitant rise in patient selfmanagement and care given by family members. Recognition of the importance of the contribution of family care to the health system is also growing. This article reports the findings of a New Zealand study which explored the experiences of family carers who manage technical health procedures at home. It then draws attention to some broader issues raised by shifting complex care from professional management in hospital settings to family care at home, namely the ways in which complex home care blurs the boundaries between professional and family care (creating the ambiguous position of the expert carer) and questions of safety and responsibility in family care. We also discuss the implications for policy around family caregiving in New Zealand. Given the potential physical and mental health impacts of caring, it is time for renewed consideration of what family carers should be expected or allowed to manage and how the health system can support them in their important role. ARTICLE HISTORY

Paediatric enteral feeding at home: an analysis of patient safety incidents

“…Many families also worry about making mistakes or feel inadequately prepared 29 30. The adequacy of training and information for parents needs to be viewed as a system issue and vital to the safety of care at home 31…”

A systematic concept analysis of ‘technology dependent’: challenging the terminology

“…General concerns when planning to move to home includes parents' stress about becoming a clinician in the home and stress about the potential for equipment malfunction [24,68,71,[93][94][95][96][97][98][99][100][101][102][103][104][105][106][107]. Specific challenges identified include grieving for a well child [71]; learning to master care delivery in a variety of settings [108]; guilt over having less time with the other children at home or relying on them for assistance in care giving [109]; causing pain to their child when carrying out clinical procedures [109][110][111][112]; concern over sleep disturbance [108,113]; and difficulty accessing and delivering a large number of medications [24]. A number of papers highlight how parents obtain a sense of control as they adapt their role as primary care givers of a child who is technology dependent.…”

The economics of patient safety Part III: Long-term care

“…These issues are echoed by the Public Inquiry into the Safety and Security of Residents in the Long-Term Care Homes System released in Ontario, Canada also in 2019. The report identified a number of systemic issues threatening the quality of care offered in Ontario's long-term care homes, and its 91 recommendations provide a detailed plan for long overdue improvements (Gillese, 2019 [17]).…”

“…This is compounded by the fact that provision of care is distributed across a number of public and private providers, with potentially differing operating procedures, staffing requirements, and accountability mechanisms. None the less, as the Public Inquiry into the Safety and Security of Residents in the Long-Term Care Homes System in Ontario, Canada, stated in its Strategy for Safety, it is a critical public health concern that LTC provision is safe, and one that is within the mandate of good governance to address (Gillese, 2019 [17]) (RNAO, 2019 [54]) 82.…”

“…Between 2017 and 2050, the share of the population 80 and above will more than double on average in OECD countries, from 4.6% to 10.1%. At least one in ten people will be 80 or older in nearly half (17) of OECD countries by 2050, while in six countries (Lithuania, Portugal, Italy, Greece, Korea and Japan), more than one in eight people will be 80 or older.…”