RN, PhDProfesora Titular de Universidad y Vicedecana de Investigación de la Facultad de Enfermería de la Universidad de Navarra. Miembro de la Junta Directiva de la International Family Nursing Association
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The demographic ageing and the changes in epidemiological patterns, such as the progressive increase in chronic conditions, are having an impact on healthcare and the setting where this is conducted. In this new context, nurses are developing new ways of working, including innovative roles and profiles, in order to give an answer to current sociosanitary challenges, such as chronicity.
The diagnosis of a severe chronic disease, such as cancer, complex heart disease or dementia, entails a high level of suffering and a major limitation in quality of life, productivity, and performance status of patients and those who live with the disease: the family. This is even more so when there is a situation of dependence which requires continuous care, and the need to adapt to new roles and responsibilities within the family structure. Sometimes this reality generates a higher level of stress in relatives than in patients, and this shows the need to include those persons close to the patient as subject of care.
A family approach to care involves including the family in the process of providing said care. The patient and his/her family will become the central focus of the system, instead of merely providing care for the disease. The objective is to understand the experiences and responses of the patient and the rest of the family members, their beliefs and behaviours in terms of health, as well as the family relationships and performance. In this way, significant data will be collected, that will help to implement interventions for orientation, education and emotional support for the patient and his/her family (1). To this aim, it is necessary to support caregiver families, incorporating then to the process of care, not only as a resource, but also as persons who might need professional support in order to sustain their wellbeing and quality of life; even more when we know that interventions with family approach will have positive results in the physical and psychological health of patient and relative (2).
However, advances in care research have not translated into a change in how care is addressed, and a dichotomy has been created between research achievements and practice of care with families. Regardless of the value assigned to person-and-family-centered care, in real practice there is still a fragmented disease-centered approach. Different factors (political, management, professional, structural and economic) have made impossible the systematic implementation of care targeted to the real needs of families living with a relative with chronic disease.
How can we, as nurses, contribute to an improvement in health results, while at the same time promoting value-based healthcare? The challenge is to develop a strong and renewed professional leadership which supports the change of orientation of the current Healthcare System towards a System of Care, with the person and family as axis, and addressing the needs of its users as its goal.
Undoubtedly, we as nurses are the professionals who are closer to the suffering of families living with a family member with severe chronic condition, and we will support any change or innovation intended to improve the wellbeing and quality of life of persons. This also appears in the recent report about the key role of nurses and midwives in order to address the current challenges of society in terms of universal health and quality (3). This report was formally presented at the World Summit for Health Innovation held in Qatar on November, 14th, 2018, showing the strong support by the public opinion for a higher leadership by nurses and midwives in healthcare services.
The next step, therefore, requires the action by leaders with critical ability and making evidence-based decisions, who are committed to innovative and inclusive models of care, with the family as central axis.
- Leahey M, Wright LM. Application of the calgary family assessment and intervention models: reflections on the reciprocity between the personal and the professional. J Fam Nurs. 2016; 22(4):450-9.
- Ewart L, Moore J, Gibbs C, Crozier K. Patient- and family-centred care on an acute adult cardiac ward. Br J Nurs. 2014; 23(4):213-8.
- Crisp N, Browniw S, Refsum C. Nursing and midwifery: the key to the rapid and cost-effective expansion of high-quality universal health coverage. Qatar. WISH Nursing and UHC Forum; 2018