The overall theme that emerged in this study, Having strength to assume the responsibility
, characterizes what the family members describe as empowerment. Each sub-theme was a distinct part of the more comprehensive theme, but in the same way overlapping in terms of narrations about the family members, patients, and health-care resources and abilities. Family members spoke of the importance of understanding the patient's physical and emotional condition as the disease progressed. They achieved empowerment when they felt able to support the patient. It was important to take into account the person's ability by showing respect and awaiting their expressed need for help. Empowerment also comes from confidence in the health-care staff to provide high-quality care. A literature review [26
] concerning family members' empowerment in palliative care shows that partnership and involvement in decision-making about care is regarded as empowerment. Wahlin and colleagues (2009) found in the context of intensive care that involvement in the care process was an important aspect of family members' empowerment [27
]. To the best of our knowledge, however, the present study reports the first findings related to empowerment in outpatient care as experienced by family members of persons with pre-dialysis chronic kidney disease.
It was found that confirming encounters with health-care staff were important for the family members' empowerment. There were accounts of being treated with respect and being regarded as a valued person in respect to the patient's care. Research on the close family of patients in inpatient care has shown the importance of being met with respect and being listened to, both from the point of view of the family members' sense of control [4
] and quality of care [28
]. Furthermore, empowerment in nursing has been defined in terms of respect, equal partnership and mutual participation [11
]. Findings in this study emphasise the health-care staff's role in increasing family members' sense of empowerment through confirmatory encounters. Furthermore, the findings support previous research [5
] showing that family members express the need to be met with understanding and receive emotional support.
Trust in the health-care staff was found to be of importance for family members' experiences of empowerment. Research regarding intensive care has shown that a caring atmosphere where family members receive continuous and honest information increases their empowerment, as does the belief that the patient is receiving the best medical treatment possible [27
]. Millberg and colleagues [29
] found that family members felt powerless when the patient's diagnosis was delayed and there was difficulty getting help.
The family members in this study described knowledge acquisition as essential for their empowerment, a finding supported by previous research [4
]. Comprehending through knowledge was accomplished by getting answers to their questions. They sought information from the literature, via the Internet, and by talking to health-care staff. Seeking information outside health-care encounters to acquire an understanding of the disease has been described by patients before [23
] and is in accordance with the process of establishing empowerment. Previous findings have underlined the need for staff to support family members by providing them with relevant knowledge that is important to them [6
Empowerment can also be highlighted through consideration of its opposite: powerlessness [31
]. The family members in this study described experiences of feeling left out. They experienced limitations with regard to being invited to attend the patient's health-care encounters, and they were uncertain about their role in the person's care, this because of health-care structures and processes. Previous research in critical care has illuminated the importance of the family members' feeling of participation, enabling them to gain control over the situation [32
], ease their burden [5
], decrease their vulnerability [33
] and give them strength [4
]. The inability to obtain the same information as the patient, referred to by family members in the present study, represents the absence of empowerment [11
]. Previous research supports this finding of powerlessness in terms of being unable to help the patient and having no other choice than to rely on the health-care professionals [32
] even if they are not easily accessible.
The present findings regarding empowerment for family members include the importance of having the knowledge and ability to be supportive as well as having the willingness to act and assume responsibility when necessary. These findings emphasise the need for a health-care organization that includes the family members when one of their own is stricken with a chronic disease. Studies among patients undergoing dialysis reveal a positive relationship between social support and health care outcomes [34
]. Including family members in the course of the disease to enable them to achieve empowerment may have an impact on the quality of care for patients in the pre-dialysis stage of kidney disease. The findings regarding the family members' responsibility concerning the patient's care and management of their medication are supported by previous research indicating that family members see themselves as important links between the patient and health-care professionals [4
Listening to the family members' experiences and acknowledging their competence by focusing on their strength and encouraging them to tell their stories increased their sense of empowerment in health care [35
]. Foster and colleagues claim that to cultivate an organization that includes and strengthens the whole family, there is a need to change health-care staff's strategies and attitudes towards the health-care system [37
]. To focus on the whole family in health care is described as family-focused nursing [38
] or the frontline in a clinical microsystem [39
] and represents collaboration between patient, family and health-care staff for the purpose of providing high-quality care.
Empowerment in the present study had to do with family members' wanting to protect the patient from anxiety and being a positive force in changing lifestyle habits to improve the person's condition. However, this can be viewed as paternalism [40
], in contrast to the creation of the trust and learning that are essential for empowerment of patients in outpatient care [23
]. Thus, it is important to pay attention to empowerment of both the patient and family members to avoid paternalism or materialism. Family members' empowerment is an important component necessary but not in and of it self sufficient for achieving the larger outcome of quality patient care [41
Every effort has been made to ensure trustworthiness of the findings by providing sufficient descriptions of empowerment grounded in family members' narrations. Hence, to make the results more credible, the quotations represent different family members and different relationships to the patient [42
]. During the interview, the researcher summarized the participant's answer and asked whether the narrative had been correctly understood. The interviews in their entirety served as a point of reference throughout the analytical process when deeper understanding was needed of the meaning units, codes and sub-themes. In addition, the process of data collection was conducted, coded and analysed in Swedish. The quotations were translated directly from Swedish to English by an Englishman who spoke fluent Swedish so the original intended meaning would be preserved.
Procedures directed towards the credibility and transferability of the results were undertaken. Empowerment is a complex phenomenon and changes over time [43
]. Interviewing family members on two occasions over time can increase the credibility of findings [22
] as it can be seen as prolonged engagement. The time between the two interviews could have had an effect on the findings. The findings included more narratives about family members' experiences of responsibility for the patient in the second interview, in relation to the first interview. The analysis was divided into several stages of development, facilitating systematic inspection with an eye to the criterion of dependability. The findings show a high level of dependability without change over time [22
The interviews on the second occasion were not conducted by the same researcher as on the first. This use of different researchers may have had a negative effect on the credibility of the findings. On the other hand, it could have had a positive
effect if the same results emerged on the two occasions [22
]. In the literature this is called investigator triangulation [19
]. In addition, the data and research process were scrutinized by the research group to manage the bias that is embedded in close engagement [46
]. For the sake of credibility, the analytical process has been illustrated so the reader may follow the researcher's interpretations. Choosing participants with a diversity of experiences also enhanced the credibility of the study [21
Empowerment is not a term commonly used in society at large but is usually described in such terms as "power", "delegation of power to" and "self-determination". Researchers must have a pre-understanding of the concept. Therefore, a literature review on empowerment was performed before the data collection that guided the follow-up questions in the interview and should have increased the dependability of the findings [22
]. This made it possible to validate the findings through appropriate formulation of the follow-up questions [47
]. Furthermore, the interviews proceeded on the participant's own terms. That is, participants had the opportunity to share their experiences of health care in an open way without leading questions.