Abstract

The treatment of chronic kidney disease (CKD) places a major burden on patients and their families. Interventions such as nutritional management, medication regimen, and renal replacement therapies require active patient participation. An integrative literature review was carried out to identify articles on the engagement and participation of people with CKD in their care. The Medical Subject Headings (MeSH) “Kidney Failure, Chronic”, “Self Care”, and “Patient Participation” were used to conduct a search on the following databases: Cumulative Index to Nursing and Allied Health Literature (CINAHL), the U.S. National Library of Medicine® (Medline/PubMed), Biblioteca Virtual em Saúde (Bireme). A total of 21 articles published between 2012 and 2016 were selected. The most commonly used data collection and analysis techniques were semi-structured interviews and phenomenological thematic analysis, respectively. The articles were categorized into the following thematic groups: illness management and treatment; involvement in the decision-making process; advanced care plan; and home peritoneal dialysis. We found that there is a lack of qualitative research in certain areas, namely kidney transplant recipients and people with initial stages of CKD. People with CKD should be encouraged to actively engage in their own care, which in turn requires the knowledge, motivation and support of health professionals.

Chronic renal disease; Self-care; Patient participation

Introduction

Complex chronic diseases such as chronic kidney disease (CKD) are a global public health problem¹1. White SL, Chadban SJ, Jan S, Chapman JR, Cass A. How can we achieve global equity in provision of renal replacement therapy? Bull World Health Organ 2008; 86(3):229-237.^,22. Couser WG, Remuzzi G, Mendis S, Tonelli M. The contribution of chronic kidney disease to the global burden of major noncommunicable diseases. Kidney Int 2011; 80(12):1258-1270.. Health system responses to this problem are based on care models that emphasize behavioral change, the adoption of healthy lifestyles, and adherence to treatment regimens³3. Lawn S, McMillan J, Pulvirenti M. Chronic condition self-management: Expectations of responsibility. Patient Educ Couns. 2011; 84(2).^-44. Welch JL, Johnson M, Zimmerman L, Russell CL, Perkins SM, Decker BS. Self-Management Interventions in Stages 1 to 4 Chronic Kidney Disease: An Integrative Review. West J Nurs Res 2015; 37(5):652-678.. Overloading patients and carers with guidelines pertaining to the disease is a concern that has driven considerable research in this area⁵5. Havas K, Bonner A, Douglas C. Self-management support for people with chronic kidney disease: Patient perspectives. J Ren Care 2016; 42(1):7-14..

CKD requires dietary restrictions, polypharmacy, and specialized care during both the initial stages and renal replacement therapy (hemodialysis, peritoneal dialysis, and kidney transplantation)⁴4. Welch JL, Johnson M, Zimmerman L, Russell CL, Perkins SM, Decker BS. Self-Management Interventions in Stages 1 to 4 Chronic Kidney Disease: An Integrative Review. West J Nurs Res 2015; 37(5):652-678.. As the disease develops, patients experience a decline in their overall health status, including their physical and psychosocial functions⁶6. Clark-Cutaia MN, Ren D, Hoffman LA, Burke LE, Sevick MA. Adherence to hemodialysis dietary sodium recommendations: influence of patient characteristics, self-efficacy, and perceived barriers. J Ren Nutr 2014; 24(2):92-99..

Individual behavior has a major influence on the success of therapy and achieving care plan goals. Various factors influence adherence to treatment, including motivation, information, and social and family support. In this respect, the support provided by health professionals and healthcare services plays a critical role in improving knowledge, the adoption of adaptive coping strategies, and building self-confidence⁶6. Clark-Cutaia MN, Ren D, Hoffman LA, Burke LE, Sevick MA. Adherence to hemodialysis dietary sodium recommendations: influence of patient characteristics, self-efficacy, and perceived barriers. J Ren Nutr 2014; 24(2):92-99.^-77. Johnson ML, Zimmerman L, Welch JL, Hertzog M, Pozehl B, Plumb T. Patient activation with knowledge, self-management and confidence in chronic kidney disease. J Ren Care 2016; 42(1):15-22..

Psychometric instruments designed to measure, among other things, self-efficacy, engagement, motivation, adherence, knowledge, and patient activation⁸8. Morton RL, Snelling P, Webster AC, Rose J, Masterson R, Johnson DW, Howard K. Dialysis Modality Preference of Patients With CKD and Family Caregivers: A Discrete-Choice Study. Am J Kidney Dis 2012; 60(1):102-111.^-99. Kim GJ, Je NK, Kim DS, Lee S. Adherence with renal dosing recommendations in outpatients undergoing haemodialysis. J Clin Pharm Ther 2016; 41(1):26-33. can further our understanding of the interconnections between the above factors and how they influence the provision of adequate treatment.

Qualitative research approaches allow researchers to gain valuable insight into the perceptions of people living with kidney disease to support strategies to increase patient activation.

In view of the above, the guiding question of this study was: what are the most common features of qualitative studies on the engagement and participation of patients with CKD in their own care?

Given the importance of patient-centered care¹⁰10. Epstein RM, Street RL. Epstein 2011, The value of patient-centered care. Patient Educ Couns 2007; 68(2):179-185., where the effective participation of patients in decision-making about their care is a key element of high-quality care, we conducted a literature study of qualitative research addressing the engagement and participation of people with CKD in their treatment.

Methods

A integrative literature review was conducted consisting of the following stages: formulation of the guiding question; definition of inclusion and exclusion criteria for the literature search; definition of the information to be extracted from the selected studies; analysis of the selected studies; interpretation of results, and presentation of the review¹¹11. Mendes KDS, Silveira RCDCP, Galvão CM. Revisão integrativa: método de pesquisa para a incorporação de evidências na saúde e na enfermagem. Texto Context - Enferm 2008;17(4):758-764..

The Medical Subject Headings (MeSH) “Kidney Failure, Chronic”, “Self Care”, and “Patient Participation” were used to conduct a search on the following databases in February 2017: Cumulative Index to Nursing and Allied Health Literature (CINAHL), the U.S. National Library of Medicine® (MEDLINE/PubMed), Biblioteca Virtual em Saúde (BIREME). A total of 2,647 references were found, of which 28 met the inclusion criteria after reading the titles and abstracts.

The following inclusion criteria were used for the selection of articles for the final sample: primary studies using a qualitative research design published between January 2012 and December 2016 involving participants with CKD in any one of its stages; full version of the article available electronically in English, Portuguese, or Spanish; articles addressing aspects directly related to the engagement and participation of patients in their care.

In addition to articles that did not meet the above criteria, experience reports, letters to the editor, reviews, descriptions of programs, and mixed method studies with the predominance of quantitative methods were also excluded. Seven studies were shown not to meet the inclusion criteria after reading the selected articles in their entirety, resulting in a final sample of 21 articles.

The study was restricted to qualitative studies because qualitative research has the capacity to unravel the perceptions, feelings, and experiences of people with CKD in relation to their engagement and participation in their own care. According to Minayo¹²12. Minayo MCDS. Análise qualitativa: teoria, passos e fidedignidade. Cien Saude Colet 2012; 17(3):621-626., through systematic analysis, qualitative research enables the objectification of a type of knowledge whose raw material are opinions, beliefs, values, representations, relations, and human and social actions from the intersubjective perspective of actors.

A template elaborated by the authors was used to present the selected studies including the following information: article title, year and journal, method used for data analysis, proposed objective, number and sex of the participants, data collection method, and main results. A partial version of the completed template was presented at an international event¹³13. Almeida O, Santos W, Rehem T, Medeiros M. Envolvimento e participação da pessoa com doença renal crônica em seus cuidados: uma revisão sob a perspectiva qualitativa. In: Atas do 6° Congresso Ibero-americano em Investigação Qualitativa e 2° Simpósio Internacional de Investigação Qualitativa; 2017; Salamanca: Espanha. p. 742-752..

Results

The years with the largest number articles were 2014 and 2016, each with six publications. The articles reported research conducted in four continents: Europe, America, Oceania, and Asia. The country with the largest number of studies was the United States, followed by Canada. There was a predominance of journals specializing in nephrology, with the Journal of Clinical Nursing accounting for the largest number of articles with four publications.

Nursing was the area that most addressed patient engagement and participation in their care. The main research settings were dialysis clinics/centers and out-patient clinics that specialize in care and treatment for kidney disorders.

Qualitative data collection methods included semi-structured interviews, used by 81% of the studies, focus groups, nonparticipant observation, and motivational interviewing. The most commonly used data analysis method was phenomenological thematic analysis.

The use of software for data organization/qualitative analysis, particularly NVivo®, was reported by eight studies, illustrating that the use of these technology resources in qualitative research is widespread.

The studies explored a diverse range of topics, which were categorized into the following thematic groups related to the engagement and participation patients in their own care: illness management and treatment; involvement in the decision-making process; advanced care plan (ACP); and home peritoneal dialysis (HPD).

Themes explored by the research included key elements of the life of people with CKD, especially those undergoing dialysis, including thirst and weight management and management of symptoms and medication regimen, including patient participation in choosing the type of vascular access used for dialysis.

Chart 1 shows the main features of the selected articles highlighting the main findings of each study.

The main findings show the complexity of CKD and the effects of the disease on different aspects of patients’ lives, including eating habits, medication use, decline in physical functions and capacity, the emergence of specific symptoms such as pain, and psychosocial limitations. These effects require patients to develop individual adaptation and coping strategies.

Discussion

In the illness management and treatment group we included articles addressing aspects directly related to disease management and dialysis, such as symptoms, medication, renal replacement therapy (RRT), physical exercise, and adherence. The research shows that thirst and hunger management is an inherent burden that generates different emotional responses in different patients. Self-management of these symptoms consists of a combination of behavioral and cognitive elements¹⁴14. Yu J, Ng HJ, Nandakumar M, Griva K. The management of food cravings and thirst in hemodialysis patients: A qualitative study. J Heal Psychol 2016; 21(2):217-227..

Uncomfortable symptoms reported by people undergoing chronic hemodialysis include fatigue, cramps, pruritus, and depression, while key coping mechanisms include health team support and individual self-control¹⁵15. Cox KJ, Parshall MB, Hernandez SHA, Parvez SZ, Unruh ML. Symptoms among patients receiving in-center hemodialysis: A qualitative study. Hemodial Int 2016; 21(4):524-533..

One of the studies¹⁶16. Parker WM, Ferreira K, Vernon L, Cardone KE. The delicate balance of keeping it all together: Using social capital to manage multiple medications for patients on dialysis. Res Soc Adm Pharm 2016; 13(4):738-745. explored self-management of medication from the perspective of patients on dialysis. The findings show that the use of multiple medications and the weekly routine of three dialysis sessions are barriers to adherence to prescribed medication and carers and family members play an important role in adherence to medication regimens.

According to patients, exercising while on dialysis is considered less important than dialysis itself and requires encouragement and support from the health team and dialysis service. This perception was shown to be a barrier to intradialytic exercise¹⁶16. Parker WM, Ferreira K, Vernon L, Cardone KE. The delicate balance of keeping it all together: Using social capital to manage multiple medications for patients on dialysis. Res Soc Adm Pharm 2016; 13(4):738-745..

Only one article addressed treatment adherence among patients on hemodialysis¹⁷17. Thompson S, Tonelli M, Klarenbach S, Molzahn A. A Qualitative Study to Explore Patient and Staff Perceptions of Intradialytic Exercise. Clin J Am Soc Nephrol 2016; 11(6):1024-1033.. The findings show that the support of the family and other patients, perception of risk, and routine nature of treatment are facilitators of adherence, while barriers include forgetfulness, time spent on treatment, limited understanding of dietary control and medication, and lack of communication. These findings reinforce some key concepts that should be incorporated into care programs for people on hemodialysis: the involvement de family members and carers, effective communication, and confidence in the support provided by health professionals.

A study³⁵35. Morris RL, Kennedy A, Sanders C. Evolving “self”-management: exploring the role of social network typologies on individual long-term condition management. Heal Expect an Int J public Particip Heal care Heal policy 2016; 19(5):1044-1061. of self-care in people with chronic conditions also highlighted the influence of family, health services, and healthcare professionals on chronic illness management. The findings also show the need to develop interpersonal relationships with more trust and commitment between patients, family members/carers, and health professionals in order to promote autonomy and co-responsibility for care.

With respect to involvement in the decision-making process, one article suggests that in order to promote involvement in choosing the type of RRT it is necessary to simplify concepts and technical knowledge so that patients are able to make an informed decision regarding the treatment that best suits their needs²⁷27. Ameling JM, Auguste P, Ephraim PL, Lewis-Boyer L, DePasquale N, Greer RC, Crews DC, Powe NR, Rabb H, Boulware LE. Development of a decision aid to inform patients’ and families’ renal replacement therapy selection decisions. BMC Med Inf Decis Mak 2012; 12:140.. Another study²⁰20. Williams A, Manias E. Exploring motivation and confidence in taking prescribed medicines in coexisting diseases: a qualitative study. J Clin Nurs 2014; 23(3-4):471-481. investigating decision-making regarding the type of vascular access for hemodialysis showed that people with a catheter preferred this method because, based on their prior experiences, they were afraid of making the incision necessary for forming an arteriovenous fistula, and because they believe that this type of access is easier to manage. This perception goes against clinical recommendations for the early formation of a fistula.

According to patients, empowerment is influenced by trust, participation in decision-making, and the learning process, while lack of communication and indifference on the part of health professionals represent nonempowerment²⁶26. Nygårdh A, Malm D, Wikby K, Ahlström G. The experience of empowerment in the patient-staff encounter: the patient’s perspective. J Clin Nurs 2012; 21(5-6):897-904..

Structural barriers to patient empowerment should be identified so that finding mechanisms to overcome them becomes an explicit part of the process. Attention should be paid to the structural forces that affect the conditions of health and the individual’s self-care skills³⁶36. Pulvirenti M, Mcmillan J, Lawn S. Empowerment, patient centred care and self-management. Heal Expect 2014; 17(3):303-310.. Supporting patients to make informed decisions regarding available care through facilitating patient engagement and empowerment is the responsibility of health services.

Advanced care plans were addressed by two articles³¹31. Armistead N, Bova-Collis R. Advance care planning: The patient perspective. Nephrol News Issues 2016; 30(11):32-34.^,3232. Goff SL, Eneanya ND, Feinberg R, Germain MJ, Marr L, Berzoff J, Cohen LM, Unruh M. Advance care planning: a qualitative study of dialysis patients and families. Clin J Am Soc Nephrol 2015; 10(3):390-400.. In one study, patients were interviewed about their experiences with ACP and offered recommendations, including discussion of the ACP among the health team based on patients’ perceptions. The second analyzed the experiences of three people who participated in the preparation of their own ACPs, highlighting implementation barriers such as beliefs and lack of family support.

Elements identified as personal barriers to the implementation of ACPs should be contextualized in a particular way by health teams that promote this care approach. The uniqueness and subjectivity of each particular situation requires a personalized approach to handling these elements, which in turn demands specific skills from the health team. In this sense, understanding the patients’ vision and experiences with ACP can contribute to the improvement of this emerging approach.

In this respect, discussing this matter and the maturation of bioethical issues involved in the implementation of ACPs by health teams would appear to be an interesting first step towards developing these practices.

Finally, two studies explored peoples’ experiences of home peritoneal dialysis³³33. Sadala MLA, Bruzos GAS, Pereira ER, Bucuvic EM. Patients’ experiences of peritoneal dialysis at home: a phenomenological approach. Rev Lat Am Enferm 2012; 20(1):68-75.^,3434. Baillie J, Lankshear A. Patient and family perspectives on peritoneal dialysis at home: findings from an ethnographic study. J Clin Nurs 2015; 24(1-2):222-234., both of which revealed a common theme: coping with dependence on dialysis in the face of end-stage renal disease. However, the studies show that home dialysis meant that patients gained knew knowledge and learned new practices and took on greater responsibility, leading to better self-care and self-monitoring on the one hand and anguish and feeling of dependence on family members and health professionals on the other.

By revealing patients’ perceptions of this treatment, these studies help to raise the awareness of health professionals regarding the need to focus on social and emotional aspects during all stages of peritoneal dialysis. In addition to the burden of the techniques and procedures associated with this type of intervention, the factors outlined above coupled with inadequate self-care can ultimately lead to the failure of treatment.

With regard to the research method, the qualitative design made it possible to turn the experiences of people living with CKD into scientific knowledge, considering various approaches to the management of the disease. The use of this type of methodology should therefore be stimulated in nephrology research, extending its application to other contexts and groups, such as those in the early stages of CKD. In this respect, we identified only one qualitative study with people with stage 1 to 4 CKD¹⁹19. Lopez-Vargas PA, Tong A, Phoon RKS, Chadban SJ, Shen Y, Craig JC. Knowledge deficit of patients with stage 1-4 CKD: a focus group study. Nephrol 2014; 19(4):234-243., which highlighted the knowledge needs of patients and their sense of uncertainty about the future.

It is important to recognize that the complexities of CKD stretch beyond pathophysiology and multiprofessional treatment, involving intersubjective dimensions such as motivation and confidence, requiring health professionals to take a partnership approach to support individuals in achieving self-management.

Final considerations

The perspective of people with kidney disease is an important reference point for health service management, developing standard operational protocols, recommendations, and expert consensus. The qualitative approach adopted in this study showed itself to be effective for capturing the subjective meanings of individual and group representations of the engagement of people with CKD in their care, even in the face of cultural barriers such as low health literacy.

Qualitative research allows us to gain a more in-depth understanding of a given reality from a unique angle, furthering possibilities and strategies for promoting patient engagement and participation in their care in partnership with health services and professionals, thus enabling them to assume co-responsibility for their health and that of their peers.

Apart from outlining which qualitative research methods were used and how, this study identified research gaps and highlighted the settings in which people with kidney disease are involved or can be involved in their own care.

We also identified some areas that have yet to be explored using qualitative methods, namely kidney transplant recipients and people with initial stages of CKD with comorbidities besides diabetes or high blood pressure.

Despite the complexity of CKD treatment and the importance of engaging patients and their families in the care process, it is evident that participation is limited in practice. It is therefore necessary to overcome the barriers that prevent patient engagement in their own care, which requires the knowledge, motivation, and support of healthcare professionals

References

Publication Dates

History