Oncological care at home: a systematic review of the experiences of cancer patients and their caregivers

Context Homecare supports person-centred care, ensuring the possibility of a greater involvement and collaboration of patient’s relatives and friends. Picker Principles of person-centred care define the key elements that should underlie the delivery of care. Cancer has turned into a chronic disease that can be managed at patient’s home. In this study we conduct a literature review to investigate the dimensions underlying cancer patients’ and caregivers’ experience with home care, to understand to what extent health services are provided from the perspective of person-centred care and whether there are patients’ needs that have not yet been included in the Picker framework. Methods We carried out a systematic review of the literature using three databases, Pubmed, Scopus and WoS for a total of 703 articles. Articles about paediatric patients, other chronic diseases and systematic reviews were excluded. Bibliometrix was used for bibliometric analysis and PRISMA guidelines were followed. 57 articles were included in the review. The extracted data were categorised according to the type of care (Palliative, Support, Therapeutic, Recovery after transplant, Rehabilitation), the target population (patients or caregivers), the study design and the dimensions related to patients and caregivers’ experience. The dimensions related to experience were extracted and synthesised using the meta- aggregation approach, then classified through the Picker framework. In the analysis experience refers not only to the evaluation of healthcare services, but also to support actions and to patients and caregivers’ unmet needs. Results The review shows that the most frequent type of care in the home setting is palliative care, followed by support and therapeutic interventions. Regarding the study design, 43 articles were qualitative, 8 quantitative, 6 used a mixed-methods approach. According to the 8-dimensions of Picker Principles of Person-centred care, most of the studies included in the review report considerations about “Emotional support, empathy and respect”, followed by “Clear information, communication, and support for self-care”. These results apply both to patients and caregivers. The analysed articles show that information, effective communication, support for self-care, involvement in decisions and respect for preferences are the most frequent patients’ unmet needs. Moreover, an emerging need is ease of use of equipment and new technologies (e.g., tele-medicine) in the home environment. On the other hands caregivers need a better balance between individual needs and a better care to the patient. Discussion In person-centred care, individual’s specific health needs and preferences are the driving force behind all health care decisions and quality measurements. Patients feedback and evaluation are therefore at the core of the patient-centred framework. Emotional support, communication and information represent the components of home care that emerge most from patients' experience. Many recent articles report an increased use of telemedicine (teleassistance, monitoring) in the homecare setting as support for self-care. Considering the growing role of technology in home care, a new category about usefulness and ease of use could be added in the patient-centred framework. Healthcare organisations should design home care interventions to support and involve both patients and caregivers. Moreover, information needs to be used to continuously improve the way health care policies are designed and managed