Empowerment in outpatient care for patients with chronic kidney disease - from the family member's perspective

An inductive approach for qualitative data analysis was chosen. The study sample comprised 12 family members of pre-dialysis patients at an outpatient kidney clinic. Two interviews with each family member were subjected to content analysis to gain an understanding of empowerment from the family members' perspective.Having strength to assume the responsibility was the main theme that emerged from the following five sub-themes: Being an involved participant, Having confirming encounters, Trusting in health-care staff, Comprehending through knowledge, and Feeling left out. Four of these five sub-themes were positive. The fifth subtheme illuminated negative experience, indicating the absence of empowerment.Family members' experience of empowerment is dependent on their ability to assume the responsibility for a relative with chronic kidney disease when needed. The findings emphasise the need for a family perspective and the significance of a supportive environment for family members of persons in outpatient care.Research on families of adults with chronic diseases has increased over the last decade, perhaps related to recognition of the family's importance in providing psychological support for the patient and fulfilling the role of caregiver [1]. However, studies specifically about the families of patients with chronic kidney disease are sparse [2]. More general research regarding family members living with a person with a chronic disease reveals a reduced sense of individual freedom arising from the responsibility for the care of the patient [3-5]. Furthermore, it is common for family members to put their own needs in the background, and they describe a vulnerability involving a sense of stigmatization, loss and anxiety [3].Research has shown that family members of persons with serious chronic illness in outpatient care view their future as insecure and frightening. They appreciate information that helps them understand disease-related changes in the patient [5]. Fami