Patients’ and healthcare professionals’ beliefs, perceptions and needs towards chronic kidney disease self-management in China: a qualitative study

Abstract

ObjectivesTo support the adaptation and translation of an evidence-based chronic kidney disease (CKD) self-management intervention to the Chinese context, we examined the beliefs, perceptions and needs of Chinese patients with CKD and healthcare professionals (HCPs) towards CKD self-management.DesignA basic interpretive, cross-sectional qualitative study comprising semistructured interviews and observations.SettingOne major tertiary referral hospital in Henan province, China.Participants11 adults with a diagnosis of CKD with CKD stages G1–G5 and 10 HCPs who worked in the Department of Nephrology.ResultsFour themes emerged: (1) CKD illness perceptions, (2) understanding of and motivation towards CKD self-management, (3) current CKD practice and (4) barriers, (anticipated) facilitators and needs towards CKD self-management. Most patients and HCPs solely mentioned medical management of CKD, and self-management was largely unknown or misinterpreted as adherence to medical treatment. Also, the majority of patients only mentioned performing disease-specific acts of control and not, for instance, behaviour for coping with emotional problems. A paternalistic patient–HCP relationship was often present. Finally, the barriers, facilitators and needs towards CKD self-management were frequently related to knowledge and environmental context and resources.ConclusionsThe limited understanding of CKD self-management, as observed, underlines the need for educational efforts on the use and benefits of self-management before intervention implementation. Also, specific characteristics and needs within the Chinese context need to guide the development or tailoring of CKD self-management interventions. Emphasis should be placed on role management and emotional coping skills, while self-management components should be tailored by addressing the existing paternalistic patient–HCP relationship. The use of electronic health innovations can be an essential facilitator for implementation.

Content Validity Assessment of the Revised Illness Perception Questionnaire in CKD Using Qualitative Methods

“…However, this conceptualization of personal control as the performance of coping behaviors may not be aligned with CKD patient perceptions based on the wording of items. For example, the item “My actions will have no effect on the outcome of my kidney disease” may be interpreted differently or more broadly than just the concept of coping behaviors, including other factors such as treatment adherence (e.g., diet) and performance/avoidance of risky behaviors (e.g., cigarette smoking) [ 13 ]. Since most CKD patients experience a gradual decline in kidney function and may have received information from their healthcare providers to expect that illness pattern, they may have a different interpretation of the meaning of “my actions” or “outcome” with respect to their CKD than the IPQ-R authors intended.…”

Strategies to Improve Long-Term Outcomes for Patients with Chronic Kidney Disease in China

“…A meta-analysis and systematic review of self-management interventions for CKD found that self-management (e.g., lifestyle modifications such as for nutrition and physical exercise, and/or medical behaviour modifications such as treatment adherence and complication control) can lead to lower blood pressure, C-reactive protein, and glycated haemoglobin (HbA1c) levels in CKD patients [48]. Despite the reported benefits, self-management is poorly understood by patients and physicians [49] and each has frequently cited lack of CKD knowledge and difficulties in making necessary lifestyle changes as barriers to effective self-management [49]. The Chinese practices Tai Chi and Qigong have been independently found to improve modifiable CKD risk factors (e.g., hypertension) [50, 51], suggesting their incorporation into a self-management programme may benefit some patients.…”

Persepsi Penderita Penyakit Ginjal Kronik dalam Menjalani Hemodialisa

“…Kehadiran gejala kronis, pendidikan pasien dan pengalaman belajar dari pasien lain berkontribusi pada keyakinan ini. Mereka sebagian besar mengatakan takut saat pertama kali didiagnosa penyakit ini karena mereka tahu bahwa tidak ada pengobatan yang dapat menyembuhkan penyakit mereka (Shen, et al, 2021). Hasil penelitian dari Muscat, et al, (2021) didapatkan bahwa tingkat distress penderita CKD berada pada tingkat sedang dan berat.…”