Home care for patients in need of advanced care and technology : a challenge for patients and their caregivers

Background and aim: There is an ongoing trend of advanced care ‘moving out’ from hospitals and into patients' homes. In Sweden, caregivers with limited training, employed by municipalities or private agencies take 24-hour responsibility for patient care with limited support from healthcare professionals. The aim of this thesis was to explore and gain new and broadened understanding of 24-hour home care for patients in need of advanced care and technology. Material and methods: A multi method approach was used. Studies I and II resulted from a field study using grounded theory methodology. Interviews and observations were performed in the homes of four adult patients in 24-hour home care (study I) and their 19 caregivers (study I and II). Participants in study III and IV were caregivers (n=128) caring for adult patients in 24-hour care with home mechanical ventilation (HMV). A study-specific questionnaire, including questions in accordance with the Demand-Control model, was used. Caregivers’ socio-demographic and workplace data, perceived competence and responsibility (study III), and their perceived working conditions (study IV) were investigated. Descriptive statistics and logistic regression analyses were performed. A comparison was conducted with a population-based survey including caregivers in general home care (n= 585). Results: In the qualitative studies, patients and caregivers were found using compensatory processes when care and work were not suited to their needs, illustrated in two theoretical models: 1. The patients strived for control and safety by taking control, seeking safe hands and navigating in the care system. In their strivings, they selected caregivers they could trust, instructed unskilled caregivers and coordinated their care themselves. 2. The caregivers compensated by day-by-day learning, balancing relations with the patient, self-managing and navigating the patient care system in their strivings to combine safe care with good working conditions. Actively employing compensatory processes, some caregivers adopted an ‘inclusive approach’, compensating for their own barriers as well as those of their colleagues, and taking overall responsibility for their workplace. Among the caregivers in HMV care (n=128) investigated, 55% (n=70) lacked formal health care training. 27% (n=34) reported shorter courses, and 19% (n=24) had training equivalent with a licensed practical nurse exam (LPN). Regardless, 80% the caregivers rated their competence as high, and 59% rated their responsibility as high. On-the-job training was significantly associated with high ratings on perceived competence, responsibility and control. Being clinically supervised was associated with high ratings on responsibility and psychological demand. Seventy-six of caregivers intended to stay in their jobs for the next two years, and 29% experienced bullying and/or discrimination at their workplace. Female caregivers had more healthcare training and felt more competent and stimulated than males. Compared to the population-based survey group, no differences in perceived working conditions were found except for psychological demand, where the caregivers in HMV care rated lower. Conclusion: Despite a general lack of formal healthcare training and support, patients and caregivers managed 24-hour home care by compensating, on-the-job training, one-patient care, and including caregivers. However, the results suggest that improved training, support and quality control are needed to ensure safe patient care and good working conditions for caregivers. These results can contribute to continued development of the caregiver role in HMV care.