Last week I was debating with a group of second year pre-registration child field of practice nursing students what concepts such as ‘family-centred care’ and ‘patient-centeredness’ meant to them and how these concepts informed their practice. Overwhelming the students felt these concepts were implicit when working with children, young people and families and a central part of clinical practice. However, uncertainties emerged when challenged about how health professionals incorporate patients’ (or in this case children, young people and families) views into care delivery. A range of perspectives where offered: some students’ perceived that providing accurate information was essential to delivering ‘patient-centred care’ and a way of helping patients understand and ultimately ‘adhere’ to treatments. Other students perceived that in reality choices from treatment options through to the way services are delivered are often limited and the acute nature of many of the children they care for makes truly embodying ‘patient-centred care’ a complex issue. Certainly protracted discussions with a patient that could delay vital intervention is inappropriate and in life-threatening situation clinical decisions need to be made promptly, albeit with clear and concise explanations. What the students failed to consider is the meaning of ‘patient-centeredness’ to patients (or the child, young person and family).
Although there are conceptual differences and no clear definition, attributes relating to ‘patient-centeredness’ are similar across health professional groups and include: valuing patients and the family’s expertise and knowledge; forming effective partnerships; facilitating the patient, and family where appropriate, to participate in care delivery through the process of negotiation, empowerment and shared goal setting; and ensuring effective information provision to enable collaboration in care decisions (Mead and Bower 2000, Shields et al 2008). However, like the students, there is very little research that examines patient-centeredness from the patient, or child and family, perspective. It is likely that patients and professionals have different values in relation to their expectations when meeting individual health needs. Health professional only ever have a ‘snapshot’ of their patients’ lives and primarily make decision based on clinical knowledge and experiences of managing a wide range of patient problems. In contrast, patients have unique needs, expectations and experiences. In the context of long-term conditions patients’ often have vast expertise in managing their condition, and knowledge of the impact of their health status on family life, socialising, and finances.
Current health policy within western societies endorse a model of service and care delivery based on patient-centeredness emphasising the need for health professionals to actively engage with and involve service users in decision-making processes (International Alliance of Patients’ Organizations. 2007). In addition to evaluating treatments, asking patients directly what the problems are and whether or not they are being addressed offers the opportunity to harmonise patients and professionals viewpoints. This could provide greater opportunities to shape health care intervention plans and address patient priorities. Furthermore, the anticipated benefit of effective patient- professional engagement and collaboration is improved health outcomes because patients are more likely to respond actively to illness symptoms, have greater understanding of the implications of professional advice, increased concordance with treatments, and better able to cope with their condition. Patient-centered care is the theme for the 7th International Shared Decision Making conference taking place in Peru this June. I look forward to sharing with you the debates and issues that arise from the conference, and of course my experiences of visiting Peru!
International Alliance of Patients’ Organizations (2007) Patient-centre healthcare review 2nd edition; International Alliance of Patients’ Organizations;
Mead, N., Bower, P. (2000) Patient-centredness: a conceptual framework and review of the empirical literature. Social Science and Medicine 51: 1087-1110;
Shields, L., Zhou, H., Pratt, J., Taylor, M., Hunter, J., Pascose, E. (2012) Family-centred care for hospitalised children aged 0-12 years. Cochrane Database Systematic Reviews. Issue 2.