First, we reviewed the qualitative literature on patients’ needs and preferences for self-management support [27]; this review revealed that for patients with chronic conditions, it is important that self-management support is tailored to their individual needs. Furthermore, they need not only information but also instrumental, psychosocial, and relational support. Patients often reported that these needs were unmet because professionals focus on informational and instrumental support alone [27].

Developing a collaborative partnership with shared decision making is key to improving self-management support [27]. This encouraged us to further assess the specific needs, preferences, and challenges with regard to self-management support of kidney transplant recipients through focus groups and individual interviews (n=32) [28]. Participants were recipients from a single transplant center in a university medical hospital in the Netherlands. Results indicated a need for a holistic approach after kidney transplantation. Although recipients were satisfied with the medical care received, psychosocial support focusing on the emotional challenges of living with a transplant was often lacking. Recipients wanted to participate in shared decision making and be collaborators in the process; to achieve this, a relationship of trust was considered essential. This type of support was particularly important in the first year after transplantation. However, one size does not fit all, and self-management support should be adapted to individual needs and circumstances; this was confirmed in a Q-methodological study in the same transplant center, which found differing attitudes toward self-management support [29]. Q-methodology is a qualitative-quantitative method that provides a foundation for the systematic study of peoples’ attitudes toward a certain topic using statements, which are ranked by participants in a quasi-normal grid ranging from completely agree to completely disagree.

To explore nurses’ perceptions, attitudes, and potential needs, interviews were held and observations were performed. All participants worked at the same university medical hospital in various outpatient departments. Individual semistructured interviews with nurses and NPs were held (n=27) to investigate nurses’ views on the concept of self-management in general and how these views relate to the self-management interventions they use in clinical practice [30]. Results showed 3 distinct views on self-management support as follows: adhering to a medical regimen; monitoring symptoms; and integrating illness into daily life; only the last viewpoint reflected a holistic approach with the nurse focusing on coaching. Medical management was the focus of self-management for many nurses. The lack of attention for psychosocial aspects may be attributed to a lack of confidence, skills needed to address psychosocial issues, or available tools or interventions that limit them in offering psychosocial support. Providing training or practical interventions protocols or tools for holistic self-management support could partially resolve this problem by giving nurses resources to encourage self-management effectively.

To more objectively assess NPs’ roles and skills in outpatient consultations and how this compares with their perception of their responsibilities for patients with chronic conditions, NPs (n=5) were observed during daily practice [31]. Although NPs reported that they considered building a relationship with their patients of utmost importance, their consultations were mostly based on a conventional medical model of medical history taking. Little attention was paid to the social, psychological, and behavioral dimensions of illness. Finally, a realist review of the literature was conducted to understand how nurse-led interventions that support self-management of patients with chronic conditions work and in what context they work successfully. Interventions focusing on intrinsic processes were found to be the most effective, as opposed to focusing solely on education [32]. Textbox 1 outlines the main findings from the needs assessment.

Based on the needs assessment described above, we developed a nurse-led self-management support intervention that included the following key elements: a general, open structure that leaves room for individual preferences and tailoring of support; a holistic approach encompassing medical, emotional, and social self-management challenges; promoting shared decision making between nurses and patients; and patient empowerment by supporting self-efficacy and intrinsic motivation. The overall goal of the intervention is for kidney transplant recipients to enhance their self-management skills to integrate their treatment and life goals and subsequently optimize their quality of life and health-related outcomes. In addition, we aimed to improve NPs’ skills to optimize self-management support.

The overall program goal was translated into performance objectives (POs) that specify the behavioral actions the target groups need to perform to change behavior successfully. The target groups were kidney transplant recipients and NPs. Optimizing self-management after kidney transplantation requires intrinsic processes (eg, motivation and self-efficacy [33]) and long-term skills to establish and maintain behavior change and also abilities to adapt behavior when circumstances change. Well-developed self-regulation skills are supportive in performing these tasks. Therefore, the specific behavioral actions that contribute to the overall goal of the intervention were specified in POs based on the principles of self-regulation theories [34]. Studies on other chronic illnesses showed that interventions based on self-regulation theories could improve behavioral outcomes [35-37]. Overall, 8 POs were defined, including goal setting, planning, self-monitoring, feedback, and relapse prevention (Textbox 2).

After the definition of POs, we explored which determinants were associated with the performance of the desired behavior, as stated in POs. The determinants were selected from the following health behavioral change theories: Self-Regulation Theory [34]; Theory of Planned Behavior [38]; Social Cognitive Theory [39]; Attribution Theory [40]; Relapse Prevention Theory [41]; Precaution Adoption Process Model [42]; and Self-Determination Theory [43]. Table 1 shows examples of the COs afor NPs for recipients derived from combining POs and determinants.

POs for NPs were also guided by the Self-Regulation Theory. In addition, the intervention focused on 3 components of the Five A’s model of behavior counseling [44] were incorporated, namely assessing behavior, beliefs, and motivation, agreeing with patients on realistic goals, and assisting to anticipate barriers and develop a specific action plan. The other two components of the 5A’s model (advising and arranging) were not an integral part of the intervention because they are less in line with the focus on patient empowerment. To achieve the overall program goal and considering the needs assessment, 2 POs for NPs were formulated (Textbox 2).

The determinants deemed most pertinent in predicting these POs for NPs were knowledge, skills, social and professional role and identity, self-efficacy, attitude, and outcome expectations. Table 2 shows examples of COs derived from combining POs and determinants. The full COs matrices are available on request.

The main theme of the program is optimizing self-management based on the principles of self-regulation theories—evaluating areas of life, establishing and setting goals, planning and preparing strategies for achieving the personal goals and actively pursuing goals, monitoring and evaluating goal progress, and preparing strategies for relapse prevention. Throughout the intervention, these steps are combined with the principles of SFBT to stimulate kidney transplant recipients to generate solutions rather than focusing on their problems.

The final program consists of four 15-minute sessions with an NP combined with regular appointments in the outpatient clinic. The frequency of intervention sessions is determined by the frequency of consultations within standard care. Therefore, the period between the sessions can range from 2 weeks to several months. If the period between sessions 1 and 2 is over 1 month, a telephone consultation with the NP is scheduled. During the first session, the emphasis is on assessment—raising awareness, evaluating areas of life, goal setting, and preliminary preparation of an action plan. In addition, motivation and self-efficacy are discussed using visual analogue scales ranging from 0 to 10. The second and third sessions are used to monitor and evaluate the progression on goal attainment during the past weeks and discuss outcome expectations. Throughout the second and third session, the action plan is further customized; self-efficacy is positively encouraged, and outcome expectations are discussed. During the fourth session, goal progress, relapse prevention, and generalization of learned skills to other challenges are discussed (Figure 3).

A visual communication aid called the Self-Management Web (Figure 4) was developed to facilitate the achievement of the first CO (the recipient becomes aware of and acknowledges problems in various areas of life). The Self-Management Web is used to standardize the assessment of 14 life areas and offer a visual overview to guide the conversation between the professional and patient. The Self-Management Web was developed on the basis of the needs of patients with a chronic condition in general and can be used with a variety of patient populations; this tool ensures a holistic view, because multiple areas of life are represented in the Web, and enhances intrinsic motivation because patients determine the area they prefer to focus on. The discussion about goals results in shared decision making between nurses and recipients.

During the first session, NPs encourage kidney transplant recipients to evaluate their life domains and assess if they are doing well (1, green), neither good nor bad (2, orange), or bad (3, red) on each domain. Kidney transplant recipients mark the answer on the Web to visualize domains with difficulties, which contributes to awareness. When kidney transplant recipients report a 2 or 3, an NP asks open questions to clarify the problem. When multiple areas are rated as “bad,” the NP invites the kidney transplant recipient to prioritize and select the area of life he or she wants to work on after which other steps of the intervention are carried out.

Prior to beginning the intervention, nurses were trained in delivery. A training syllabus was developed, which NPs received before the training. An intervention protocol was written for NPs, containing specific guidelines per session on how to approach kidney transplant recipients and which topics to discuss with suggestions on how to phrase specific questions. To support the implementation and adherence to the protocol, a checklist was developed for NPs to report on the steps executed per session per recipient.