Development of nursing care guidelines for the families living with a patient with an intractable disease

2006 Fiscal Year Final Research Report Summary

• Project/Area Number: 16390644
• Research Category: Grant-in-Aid for Scientific Research (B)
• Allocation Type: Single-year Grants
• Section: 一般
• Research Field: Clinical nursing
• Research Institution: Kochi Women's University
• Principal Investigator: NOJIMA Sayumi Kochi Women's University, School of Nursing, Professor, 看護学部, 教授 (00172792)
• Co-Investigator(Kenkyū-buntansha): NAKANO Ayami Kochi Women's University, School of Nursing, Professor, 看護学部, 教授 (90172361) ; NAGATO Kazuko Kochi Women's University, School of Nursing, Associate Professor, 看護学部, 助教授 (30210107) ; IKEZOE Shino Kochi Women's University, School of Nursing, Instructor, 看護学部, 講師 (20347652) ; KAWAKAMI Michiko Kochi Women's University, School of Nursing, Instructor, 看護学部, 講師 (60305810) ; URYU Hiroko Kochi Women's University, School of Nursing, Instructor, 看護学部, 講師 (00364133)
• Project Period (FY): 2004 – 2006
• Keywords: patient with an intractable disease / the family / empowerment / nursing care guidelines / family nursing

Research Abstract

Nursing care guidelines for families living with a patient with an intractable disease were developed based on the family empowerment nursing model. Among the numerous intractable diseases, guidelines were developed for the following intractable neuropathies: intractable neurological disease, ALS, Parkinson's disease, and spinocerebellar degeneration.
The guidelines were refined in several stages by interviewing nurses who care for patients with intractable disease and are researchers involved with family nursing. Additionally, by listing two examples for each disease, the usage of the care guidelines was established, and guidelines for clinical settings were developed.
The guidelines consist of the following three sections: family assessment and image formation; family assistance; and family intervention. The focus of family assessment is to ascertain each family's perception of the disease; emotional reactions; needs; and relationship with the disease. Family assessment is a process in which an image of each family is created by evaluation based on the above information.
Furthermore, nurses should intervene with families living with a patient with an intractable disease through the following activities: improving families' activities of daily living and self-care ability; providing emotional support to families; educating families; improving families' coping behaviors and ability; activating family interactions and communication; adjusting family roles; utilizing relatives and social resources effectively; assisting families with meeting developmental goals; assisting families with managing family crises; assisting families with decision making; and empowering families.