The experience of family caregivers caring for a terminal patient at home: A research review.

INTRODUCTION: One of the key aspects of the care of terminal patients is care delivered in their own home. Increasingly, the process of dying is moving from hospitals to homes. Although this process is directly related to the support of the social health environment, the involvement of family caregivers is essential. Given the impact that caring for a terminally ill family member has on people's lives, it is necessary to comprehend their personal experience in a holistic way.

OBJECTIVE: To reveal the experience of family caregivers who are caring for a terminal patient in their home.

DESIGN: A qualitative systematic review of articles published from 2000 to 2015 was conducted between March and September of 2015. The following databases were consulted: CINAHL, PubMed, PsycINFO, Cochrane Library, SciELO and Dialnet. After applying the selection criteria, 12 relevant studies were identified. Subsequently, two of the reviewers jointly performed a qualitative content analysis of them.

RESULTS: The analysis permitted the caregivers' experiences to be grouped into five themes: 1) Learning the diagnosis: uncertainty about the future and the prospects of death; 2) Feeling the physical and emotional burden of care; 3) Experiencing a limited life; 4) Redefining the relationship with the person being cared for; and 5) Valuing the importance of the support of the environment.

CONCLUSIONS: This review shows that caring for a family member with advanced illness in the home has a great impact on the personal realm of the caregiver and in the relationship he or she maintains with the ill family member. Being involved in the process of dying translates into a prodigious physical and psychological effort, together with a substantial limitation on the normal development of their own life. Additionally, the caregiver must face and establish a new relationship with the family member, in accordance with the new ethos, without the help of a formal structure providing the necessary support. These results may help to focus attention on family caregiver needs and to develop the knowledge necessary to meet the current demands of end-of-life health care in the home.