Clinical Guidelines Based on Literature Review Paper

Clinical Guidelines Based on Literature Review Paper

Self-Management Support Program for Dialysis Patients

Scope and Purpose of the Clinical Practice Guideline

Chronic kidney disease (CKD) is one of the significant public health problems in the US and other global nations. The disease burden of CKD often results in the need for renal replacement therapy, life-long dialysis, and a high risk of morbidity and mortality. There is also the increased need for frequent hospitalizations, which result in the use of additional financial resources in meeting the care needs of the patients with the disease (Ji et al., 2019). Global statistics show that CKD accounts for 843.5 out of 850 million people who have kidney disease. The worldwide incidence and CKD prevalence are reported to have increased by 87% between 1990 and 2016.

According to the Center for Disease Control and Prevention (CDC), 37 million people, or one in every seven people in the US, have CKD. Of this number, nine in ten adults are not aware of having CKD, and two in every five adults do not know that they have severe CKD. The prevalence of CKD is higher in people aged 65 years and above (38%) when compared to those aged 18-44 years (6%) or 45-64 years (12%). In terms of racial or ethnic representation, CKD is more common among non-Hispanic Black adults (16%) when compared to non-Hispanic White adults (13%) or non-Hispanic Asian Adults (13%) (CDC, 2021).

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Patients with CKD often progress to end-stage renal disease (ESRD), which results in the need for additional treatments such as renal replacement therapies, including kidney transplants and hemodialysis (HD) (Schrauben et al., 2020). HD is the standard approach utilized in the treatment of ESRD. The increased utilization of dialysis in ESRD is attributed to scarcity in donor organs, contraindications secondary to transplantation, and the cost involved in the transplant process (Shah et al., 2021). The success of HD in ESRD depends mainly on the patients’ adherence to self-management practices in the disease. However, inadequate commitment to self-management practices results in increased hospitalizations, morbidity, and mortality rates among patients with ESRD (Ranahan et al., 2020).

According to Donald et al. (2018), self-management interventions facilitate the ability of ESRD patients to make lifestyle and behavioral changes alongside managing symptoms, treatment, and psychosocial and physical impacts of the disease. Self-management in ESRD entails focusing on the needs of the illness by developing knowledge, skills, and confidence to manage the medical needs of the disease. It also entails activating the needed resources and learning to live with the condition by adopting effective coping mechanisms (Donald et al., 2018).

Self-management interventions of patients with ESRD on HD require daily lifestyle and behavioral modifications such as dietary changes and restrictions, fluid intake restrictions, adherence to medication use. In addition, in rigorous attendance to HD treatment sessions, minimize and prevent complications (Daniels et al., 2018). The utilization of self-management interventions in ESRD has been linked to benefits that include prolonged life and reduction of complications. In addition, there is also an improvement in the physical functioning and wellbeing, blood pressure, urine protein, and ability of the patients to engage in physical activity (Schrauben et al., 2020). The clinical practice guideline on self-management for patients with ESRD on hemodialysis was derived from the evidence.

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Patient Population:

Patients with End Stage Renal Disease on Hemodialysis

Target Audience:

Registered Nurses Who Work in an Outpatient Dialysis Center

Stakeholder Involvement:

The interprofessional team included nephrology physicians, nurse practitioner, nurse educator, and registered nurses. The project team was responsible for creating this guideline and forwarding it to the medical center leadership team for approval and adoption.

Model:

Chronic Care Model

Method

The source of evidence included searches of CINAHL, EBSCO, Cochrane Library, Medline, PubMed database, OVID, and ProQuest. The keywords used were chronic kidney disease, dialysis patients, ESRD, end-stage renal disease, disease burdens of CKD, and self-management support program.

The review was limited to peer-review, English-only, full-text articles published within the last five years. The professional associations’ guidelines and position papers included the American Society of Nephrology, the International Society of Nephrology, The National Kidney Foundation, and the Nephrology Nurses Association.

Selection was based on a review of the abstracts and full text to determine if they addressed the issue of education and self-management. Duplicates and those not meeting the criteria were excluded. Key information was extracted from selected studies and placed into a table to summarize the studies.

The information includes authors, year of publication, aim, design, level of evidence, sample size and type, instrument(s), and findings. Selected studies were critically appraised using The Hierarchy of Evidence developed by Fineout-Overholt et al. (2010) was used to evaluate the level of evidence for the clinical practice guideline. The self-management support program for dialysis patients was developed from the evidence.

Summary of the Evidence for a Self-Management Support Program for Dialysis Patients

The adverse impacts of chronic kidney disease imply that a lot of attention has been directed towards coming up with interventions that can result in better patient outcomes. As earlier indicated, a comprehensive literature review was performed to look for the evidence for self-management support programs for dialysis patients. The literature search conducted gave a total of 12 suitable research articles, both qualitative and quantitative, with various levels of evidence.

According to Almutary & Tayyib (2021), dialysis patients with better self-efficacy reported better health outcomes than those who had reduced self-efficacy. This indicates that a self-management support system is key for these patients, implying that the clinicians involved in managing these patients need to timeously identify patients with low self-efficacy and come up with appropriate individualized plans. Self-management also depends on facilitators and barriers. According to Bowling et al. (2017) a deficient support system and poor self-efficacy hinder CKD self-management, while positive social support and information seeking enhance the same. In the same vein, Briscoe et al., 2018 also investigated the impact of telephone follow-up by nephrology nurses as a support system. The telephone follow-up resulted in a lower percentage of admissions at the emergency department as well as thirty-day readmissions.

Other studies also looked into the importance of education. Enworom &

Tabi (2015) found out that offering an educational program to patients led to a slower decline in the GFR as compared to individuals who did receive an education. In a similar study, Husain et al. (2020) investigated the impact of peer support programs. The study revealed that the peer support program substantially led to improved self-management in patients with ESRD and undergoing hemodialysis. Another education-based study was performed by Parker. (2019), which offered education addressing fluid restriction management for improved renal fluid adherence. This education led to improved knowledge and increased renal fluid adherence.

As part of the support program, Montoya et al., 2018 investigated the impact of a nurse practitioner-facilitated chronic kidney disease group visit as compared to the usual nephrology care in patients. The six-monthly visits led to improved knowledge regarding chronic kidney disease and improved scores for self-management and self-efficacy. The efforts also led to improved self-advocacy, self-care, partnership in care, and communication. Efforts to determine the impact of telehealth informed the study performed by Park & Kim. (2019). They conducted research using a mobile application, short message service, and face-to-face counseling self-management program. The use of telehealth was associated with significant improvement in treatment compliance and self-efficacy.

The search for evidence also led to the level I evidence, which is the systematic reviews. In one such study, Peng et al.(2019) performed a review and meta-analysis to determine the self-management intervention’s impact on renoprotection for non-dialysis chronic kidney diseases. The review found that self-management interventions that enhance an individual’s ability to undertake lifestyle change are key for the CRP levels, exercise capacity, blood pressure readings, and decline in urine protein. In another systematic review, Lin et al. (2017) sought to find out the impacts of available self-management programs. They found that the programs impact the quality of life, emotional management, and medical management. These programs led to a large impact on anxiety, medium impact on quality of life, depression, and self-efficacy, and small impact on interdialytic weight gain.

Increased health literacy has also been shown to be connected with greater knowledge of CKD, as revealed by a study conducted by Shah et al.(2020). In addition disease, specific knowledge is key for health literacy. An effective self-management of chronic kidney disease is heavily dependent on disease-specific knowledge. Van et al. (2015) also conducted a study with the aim of improving self-management and knowledge among patients with chronic kidney disease. Patients who obtained up to six educational sessions showed improved knowledge of incremental health behavior changes connected to physical activity and nutrition.

Recommendations Based on the Summary of Evidence

From the summary of the evidence, various recommendations can be made regarding self-management care and programs for patients dialysis patients. Various research outputs indicated that educational programs are key in improving patients’ self-efficacy in managing the diseases. Therefore, educational protocols that take advantage of important aspects to optimize patient uptake of the educational content should be formulated and followed. These educational programs can be delivered through physical, face-to-face contacts or through telehealth (Briscoe et al.,2018). Indeed, the evidence found in the literature synthesis indicated that both the telehealth and face-to-face strategies are effective. Therefore, it should be left to the nurses in question to agree with their patients and determine the best and the most appropriate strategy to use.

Another recommendation is that healthcare professionals should be keen on knowing the patients and timeously identify their levels of perceived self-efficacy. Self-efficacy is closely related to these patients’ outcomes as low self-efficacy leads to poorer health outcomes while high self-efficacy leads to better outcomes. The implication is that the professionals should pay attention to these levels of self-efficacy and swiftly come up with individualized treatment options for these patients for better healthcare outcomes (Almutary & Tayyib, 2021). Individualized care plans have been shown to be effective among most patients as patients tend to own the programs, collaborate and adhere to the treatment and management options provided by the healthcare professionals.

Another suggestion is that healthcare professionals should have adequate training to identify potential barriers and facilitators of self-management within a particular setting. The resultant health outcomes heavily depend on how these barriers are overcome or addressed and how the facilitators are fine-tuned to take full advantage of the situation for better care outcomes. The implication is that the professionals should have sufficient training to identify these factors and use them to the advantage of the patient.

Peer support programs are key in helping patients to improve self-management, especially patients with ESRD who are undergoing hemodialysis. Therefore, another suggestion is that such programs need to be introduced to the patients early enough so that they can learn from other patients or peers who would be ready to share their journey and experience. Such programs also lead to greater health literacy, which can further improve patient outcomes (Husain et al.,2020). It is important for healthcare professionals to formulate self-care programs that integrate several aspects of care related to chronic kidney disease. Indeed, such programs should not only focus on lifestyle adjustments and self-efficacy but also on adhering to medication regimens and the treatment and management plan.

References

Almutary, H., Tayyib, N., & Gray, R. (2021). Evaluating self-efficacy among patients

undergoing dialysis therapy. Nursing Reports, 11(1), 195–201. https://doi.org/10.3390/nursrep11010019

Bowling, C. B., Vandenberg, A. E., Phillips, L. S., McClellan, W. M., Johnson, T. M., II, &

Echt, K. V. (2017). Older patients’ perspectives on managing complexity in CKD self-management. Clinical Journal of the American Society of Nephrology,12(4), 635–643. https://doi.org/10.2215/CJN.06850616

Briscoe, G.T., Heerschap, A., Kane, C.F., & Quatrara, B.D. (2018). Using post-discharge

telephone follow-up by nephrology nurses to reduce 30-day readmissions and post-discharge complications for adult patients on hemodialysis. Nephrology Nursing Journal, 45(3), 243-248, 267.

CDC. (2021, March 9). Chronic Kidney Disease in the United States, 2021.

https://www.cdc.gov/kidneydisease/publications-resources/ckd-national-facts.html

Daniels, G. B., Robinson, J. R., & Walker, C. A. (2018). Adherence to treatment by African Americans undergoing hemodialysis. Nephrology Nursing Journal, 45(6), 561–569.

Donald, M., Kahlon, B. K., Beanlands, H., Straus, S., Ronksley, P., Herrington, G., Tong, A., Grill, A., Waldvogel, B., Large, C. A., Large, C. L., Harwood, L., Novak, M., James, M. T., Elliott, M., Fernandez, N., Brimble, S., Samuel, S., & Hemmelgarn, B. R. (2018). Self-management interventions for adults with chronic kidney disease: A scoping review. BMJ Open, 8(3), e019814. https://doi.org/10.1136/bmjopen-2017-019814

Enworom, C.D., & Tabi, M. (2015). Evaluation of kidney disease education on clinical

outcomes and knowledge of self-management behaviors of patients with chronic kidney

disease. Nephrology Nursing Journal, 42(4), 363-372.

Husain, F., Kusuma, H., & Johan, A. (2020). Effects of peer support program on self-management in patients with end-stage renal disease undergoing hemodialysis. Nurse Media Journal of Nursing, 10(2), 171–181. https://doi-org.ezp.waldenulibrary.org/10.14710/nmjn.v10i2.26502

Ji, A., Pan, C., Wang, H., Jin, Z., Lee, J. H., Wu, Q., Jiang, Q., & Cui, L. (2019).

Prevalence and associated risk factors of chronic kidney disease in an elderly population from Eastern China. International Journal of Environmental Research and Public Health, 16(22), 4383. https://doi.org/10.3390/ijerph16224383

Lin, M.-Y., Liu, M. F., Hsu, L.-F., & Tsai, P.-S. (2017). Effects of self-management on chronic kidney disease: A meta-analysis. International Journal of Nursing Studies, 74, 128–137. https://doiorg.ezp.waldenulibrary.org/10.1016/j.ijnurstu.2017.06.008

Montoya, V., Sole, M.L., & Norris, A.E. (2016). Improving the care of patients with chronic

kidney disease using group visits: A pilot study to reflect an emphasis on the

patients rather than the disease. Nephrology Nursing Journal, 43(3), 207-222.

Park, O. L., & Kim, S. R. (2019). Integrated self‐management program effects on hemodialysis patients: A quasi‐experimental study. Japan Journal of Nursing Science, 16(4), 396–406. https://doi-org.ezp.waldenulibrary.org/10.1111/jjns.12249

Parker, J.R. (2019). Use of an educational intervention to improve fluid restriction

adherence in patients on hemodialysis. Nephrology Nursing Journal, 46(1), 43-47.

Peng, S., He, J., Huang, J.,Lun, L, Zeng, J., Zeng, S., Zhang, L., Liu, X. & Wu, Y. (2019). Self-

management interventions for chronic kidney disease: a systematic review and meta-analysis. BMC Nephrology, 20(1), 1-13. https://doi.org/10.1186/s12882-019-1309-y

Ranahan, M., Visger, J. V., & Kayler, L. K. (2020). Describing barriers and facilitators for medication adherence and self-management among kidney transplant recipients using the information-motivation-behavioral skills model. Clinical transplantation, 34(6), e13862. https://doi.org/10.1111/ctr.13862

Schrauben, S. J., Cavanaugh, K. L., Fagerlin, A., Ikizler, T. A., Ricardo, A. C., Eneanya,

D., & Nunes, J. W. (2020). The relationship of disease-specific knowledge and health literacy with the uptake of self-care behaviors in CKD. Kidney International Reports, 5(1), 48–57. https://doi.org/10.1016/j.ekir.2019.10.004

Shah, J. M., Ramsbotham, J., Seib, C., Muir, R., & Bonner, A. (2021). A scoping review of the role of health literacy in chronic kidney disease self-management. Journal of Renal Care, n/a(n/a). https://doi.org/10.1111/jorc.12364.

Vann, J.C.J., Hawley, J., Wegner, S., Falk, R.J., Harward, D.H., & Kshiragar, A.V.

(2015). Nursing intervention aimed at improving self-management for persons with

chronic kidney disease in North Carolina Medicaid: A pilot project. Nephrology

Nursing Journal, 42(3), 239-255.

Appendix A

Hierarchy of Evidence

Fineout-Overholt, E., Melnyk, B.M., Stillwell, S.B. & Williamson, K.M. (2010).

Critical appraisal of the evidence: Part I an introduction to gathering, evaluating, and

recording the evidence. American Journal of Nursing, 110(7), 47-52.

Appendix B

Table Comparing Studies on Self-Management

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Investigator(s)

Aim and Design

Level of Evidence

Sample

Findings

Almutary & Tayyib (2021)

Aim:To evaluate CKD patients’ self-efficacy and

to determine the factors that significantly affect self-efficacy among dialysis patients (p. 195).

Design:Cross-sectional

N = 190

Intervention group (n=190):

Male 92 and female 98

Mean age49.24%

Hemodialysis 158

Peritoneal dialysis 32

CKD stage 5/ESRD on HD

Instrument: CKD Self-efficacy Scale

Patients on dialysis who have better self-efficacy reported better outcomes than those with worse self-efficacy.

Healthcare professionalsshould focus on the early identification of patients with low levels of perceived

self-efficacy and develop individualized treatment interventions.

Bowling et al. (2017)

Aim:To identify and describe the relationship

among factors that facilitate or impede CKD self-management

for older veterans with moderate-tosevere

CKD (p. 635).

Design:Exploratory qualitative study

N = 30

Interevention Group (n=30)

Mean age 75.3%

Male 96.7%

Female 3.3%

CKD

Instrument: ????

Factors that facilitate CKD self-management:

· Information seeking and identification of self-care alternatives

· Positive social support

Factors that impede CKD self-management:

· Poor self-efficacy

· Deficient social support

Briscoe et al. (2018)

Aim:Examines the effectiveness ofa systematic quality improvement

process providing scripted post-discharge

telephone follow up bynephrology nurses (p. 244).

Design:

Comparison of patient groups Pre- and Post- implementation of a scripted telephone follow-up

Pre-intervention (n=149)

Post=intervention (n=171)

Pre-intervention

Male (n=85)

Female (n=64)

Post-intervention

Male (n=99)

Female (n=72)

Pre-intervention

Age 18-44 (n=28)

Age 45-64 (n=72

Age 65 and over (n=49)

Pre-intervention

White (n=87)

African American (n=59)

Hispanic and others (n=3)

Post-intervention

White (n=92)

African American (n=71)

Hispanic and others (n=8)

Telephone follow-up by nephrology nurses resulted in a lower percentage of admissions from the emergency department (59.9% pre- vs. 55.4% post-intervention) and a lower percentage of 30-day readmissions (28.4% pre- vs. 24.6% post-intervention).

Enworom &

Tabi (2015)

Aim: To evaluate the clinical outcomes

of participants of a Medicare KDE

program and to assess relevant kidney

disease knowledge necessary for

CKD self-management in the general

population of patients with CKD (p. 364).

Design: Retrospective evaluation of clinical outcomes

First Part

N = 49

Patient attended Kidney Disease Education (KDE) (n=25)

Patient did not attend KDE (n=24)

Second Part

The second part of the study prospectively administered 46-item Kidney Disease Know – ledge Survey (KiKS) (n=100)

Final participant completed survey (n=98)

Participants in a kidney disease education program demonstrated slower decline in GFR compared to non-participants

Providing kidney disease education

to individuals with CKD Stage 4 was associated with improved clinical outcomes.

Husain et al. (2020)

Aim: To determine the effects of peer support programs on improving self-management

in patients with end-stage renal disease (ESRD) undergoing hemodialysis (p. 173).

Design: Quasi-experimental. Intervention vs control group

N = 33

Control group (n=32)

Male 21

Female 12

18 to 40 years old = 8

41 to 65 years old = 25

Instrument: Hemodialysis Self-Management Instrument (HDSMI)

The peer support program

significantly increased self-management inpatients with ESRD undergoing hemodialysis.

Peer support programs should beintroduced early to ESRD patients undergoing hemodialysis so that they can learn aboutself-management from other patients.

Lin et al. (2017)

Aim: To perform an up-to-date systematic review of the literature and use the available evidence to quantitatively deteremine the effects of self-management programs (p. 129).

Design:Systematic review and meta-analysis

N = 2459

Records screened (n=1830)

PubMed (n=180)

Cochran (n=191)

CINAHL (n=776)

Web of Science (n=1176)

Airti Library (n=136)

Self-management programs significantly enhanced the effects of self-management on outcomes (medical, role, emotional management, and health related quality of life in patients with chronic kidney disease.

· Small effect of self-management on interdialytic weight gain.

· Medium effect on self-efficacy, depression, and health related quality of life.

· Large effect on anxiety.

Montoya et al. (2018)

Aim: To assess

the feasibility of an NP-facilitated

CKD group visit model versus the

usual nephrology care in patients with Stage 4 CKD (p. 208).

Design:Two-group, repeated-measures experimental design

Total Participant (n=30)

Group visit (n=16)

Usual care (n=14)

Total Participants

Female(n=16)

African American (n=7)

Hispanic (n=3)

Caucasian (n=18)

Other (n=2)

Group Visit

Female (n=9)

African American (n=4)

Hispanic (n=1)

Caucasian (n=19)

Other (n=2)

Usual Care

Female (n=7)

African American (n=3)

Hispanic (n=2)

Caucasian (n=9)

Other (n=0)

Group visits consisted of six

monthly visits, each lasting 1.5 to 2

hours that:

· Significantly improved CKD knowledge

· Resulted in an upward trend in mean scores for self-managementsubscales and self-efficacy scores

· Resulted in an upward trend in communication, partnership

in care, self-care, and self- advocacy

Park & Kim (2019)

Aim: To evaluate the effects of an integrated self-management program using a mobile application, a short message service using a smartphone, and face-to-face counseling and education among hemodialysis patients.

Design:Quasi-experimental

N = 84

Hemodialysis patients Experimental group (n=42)

Control group (n=42)

The experimental group received the integrated self-management program for 8 weeks.

Self-efficacy and treatment compliance were significantly higher in the experimental group than in the control group.

Interdialytic weight gain to dry weight ratio significantly decreased in the experimental group

Parker (2019)

Aim: To evaluate theimprovement of prescribed fluid

restriction in patients with ESRD who

are receiving chronic hemodialysis (p. 43).

Design:Pre-test/post-test design

N = 17

Age range = 29 to 79

Years of Dialysis = 0.5 to 15

The education on management of fluid

restrictions for improved renal fluid adherence resulted in:

· Increased knowledge of hemodialysis treatment

· Improved renal fluid adherence

Peng et al. (2019)

Aim: A systematic review and meta-analysis to investigate whether self-management intervention improves

renoprotection for non-dialysis chronic kidney disease (p. 1).

Design:Systematic review and meta-analysis

Data search retrieved (N=1737)

Excluded (n=1280)

Full text article (n=252)

Excluded (n=233)

Randomized clinical trial exclusion (n=19)

Lifestyle modification-9

Medical behavior modification-4

Multidisciplinary modification – 6

Self-management intervention to facilitate an individual’s ability to make lifestyle changeswas found to be beneficial for:

· urine protein decline

· blood pressure level

· exercise capacity

· CRP level

Shah et al. (2021)

Aim: To investigate the recent evidence of health literacy and the relationship between health literacy, knowledge and self-management of chronic kidney disease.

Design:Scoping review

N = 12

Scoping review of eligible studies

Greater health literacy was found to be associated with greater knowledge about the disease.

Communicative health literacy was a significant predictor of medication, diet and fluid adherence, and overall self-management behaviours.

Disease-specific knowledge is important for health literacy and that health literacy is essential for effective self-management of chronic kidney disease.

Vann et al. (2015)

Aim: To improve knowledge and self-management among Medicaid

beneficiaries with Stage 3b and 4 chronic kidney disease who were identified using a

population-based approach (p. 239).

Design:Pre-intervention post-intervention

design and case series approach

N = 9

Female (n=5)

Male (n=4)

Ages 50-59 (n=2)

Ages 60-69 (n=2)

Ages 70-79 (n=3)

Ages 80-89 (n=2)

Participants who received up to six in-person educational sessions

delivered by a nurse practitioner were found to have:

· Increased knowledge

· Incremental health behavior

changes generally related to nutritionand physical activity.

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General

Guideline Title
Person- and family-centred care.

Bibliographic Source(s)

Registered Nurses Association of Ontario (RNAO). Client centred care. Toronto (ON): Registered Nurses Association of Ontario (RNAO); 2002 Jul. 70 p. [63 references]
This guideline meets NGC’s 2013 (revised) inclusion criteria.

Recommendations

Major Recommendations
Definitions for the levels of evidence (Ia, Ib, IIa, IIb, III, IV) are provided at the end of the “Major Recommendations” field.
Practice Recommendations Assessment Recommendation 1.1
Establish a therapeutic relationship with the person using verbal and non-verbal communication strategies to build a genuine, trusting, and respectful partnership.
(Level of Evidence = III)
Recommendation 1.2
Build empowering relationships with the person to promote the person’s proactive and meaningful engagement as an active partner in their health care.
(Level of Evidence = Ia)
Recommendation 1.3
Listen and seek insight into the whole person to gain an understanding of the meaning of health to the person and to learn their preferences for care.
(Level of Evidence = Ia)
Recommendation 1.4

Document information obtained on the meaning and experience of health to the person using the person’s own words.
(Level of Evidence = V) Planning Recommendation 2.1
Develop a plan of care in partnership with the person that is meaningful to the person within the context of their life.
(Level of Evidence = Ia)
Recommendation 2.2
Engage with the person in a participatory model of decision making, respecting the person’s right to choose the preferred interventions for their health, by:

1. Collaborating with the person to identify their priorities and goals for health care
2. Sharing information to promote an understanding of available options for health care so the person can make an informed decision
3. Respecting the person as an expert on themselves and their life

(Level of Evidence = Ia) Implementation Recommendation 3.1
Personalize the delivery of care and services to ensure care is not driven from the perspective of the health-care provider and organization, by collaborating with the person on:

1. Elements of care
2. Roles and responsibilities in the delivery of care
3. Communication strategies

(Level of Evidence = Ia)
Recommendation 3.2
Partner with the person to tailor strategies for self-management of care that are based on the person’s characteristics and preferences for learning.

(Level of Evidence = V) Evaluation Recommendation 4.1
Obtain feedback from the person to determine the person’s satisfaction with care and whether the care delivered was person- and family-centred.
(Level of Evidence = Ia) Education Recommendations Education
Recommendation 5.1
Educate health-care providers at a minimum on the following attributes of person- and family-centred care to improve the person’s clinical outcomes and satisfaction with care:

1. Empowerment
2. Communication
3. Shared decision making

(Level of Evidence = Ia)
Recommendation 5.2
Educational institutions incorporate this Guideline into the curricula for nurses and, as appropriate, for other health-care providers.
(Level of Evidence = V)
System, Organization and Policy Recommendations System, Organization and Policy
Recommendation 6.1
Create an organizational culture that exemplifies its commitment to person- and family-centred care by:

1. Demonstrating leadership and commitment to this approach to care
2. Involving the person in co-designing health programs and services
3. Building healthy work environments for all health-care providers

(Level of Evidence = V)
Recommendation 6.2
Design an environment that demonstrably improves the person’s experience of health care by:

1. Creating healing environments
2. Being flexible and partnering to personalize care routines
3. Improving access to care and services
4. Enhancing the continuity and coordination of care and services during transitions
5. Providing continuity of caregivers

(Level of Evidence = V)
Recommendation 6.3
Collect continuous feedback from the person to determine whether their experience with health care and services was person- and family-centred, and utilize this feedback to make improvements at all levels of the health system.
(Level of Evidence = III)
Recommendation 6.4
Government agencies and regulatory bodies must monitor, measure, and utilize information from organizations regarding the person’s experience of health care to improve health-system performance.
(Level of Evidence = Ia)
Definitions
Levels of Evidence
Ia Evidence obtained from meta-analysis or systematic reviews of randomized controlled trials, and/or synthesis of multiple studies primarily of quantitative research.
Ib Evidence obtained from at least one randomized controlled trial.
IIa Evidence obtained from at least one well-designed controlled study without randomization.

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IIb Evidence obtained from at least one other type of well-designed quasi-experimental study, without randomization.
III Synthesis of multiple studies primarily of qualitative research.
IV Evidence obtained from well-designed non-experimental observational studies, such as analytical studies or descriptive studies, and/or qualitative studies.
V Evidence obtained from expert opinion or committee reports, and/or clinical experiences of respected authorities.
Note: Adapted from the Scottish Intercollegiate Guidelines Network (Scottish Intercollegiate Guidelines Network [SIGN], 2011) and Pati (2011).

Clinical Algorithm(s)
None provided

Scope

Disease/Condition(s)
Any disease or condition that requires a nurse’s care

Guideline Category
Management

Clinical Specialty
Family Practice Nursing Psychology

Intended Users
Advanced Practice Nurses Health Care Providers Nurses

Guideline Objective(s)
To promote the evidence-based practices associated with person- and family-centred care, and to help nurses and other healthcare providers acquire the knowledge and skills necessary to become more adept at practising person- and family-centred care

Target Population
Any individual with whom health-care providers establish a therapeutic relationship for the purposes of partnering for health
Note: In this Guideline, the only term that will be used to apply to these individuals is “person.” The term is inclusive of the individual and their family. A person’s “family” includes all those whom the
person identifies as significant in his or her life (e.g., parents, caregivers, friends, substitute decision-makers, groups, communities, and populations).

Interventions and Practices Considered
1. Establishment of therapeutic/empowering relationships with the person
2. Listening and seeking insight into the whole person regarding meaning of health and preferences for care with documentation in the person’s own words
3. Development of a plan of care
4. Engagement with the person in a participatory model of decision making
5. Personalization of the delivery of care and partnership with the person to tailor strategies for self-management
6. Obtainment of feedback
7. Education of health-care providers

8. Creation of organizational culture and designing an environment committed to person- and family-centred care
9. Involvement of government agencies and regulatory bodies

Major Outcomes Considered
● Client empowerment
● Client satisfaction
● Quality of care
● Quality of work life

Methodology

Methods Used to Collect/Select the Evidence
Hand-searches of Published Literature (Primary Sources) Hand-searches of Published Literature (Secondary Sources) Searches of Electronic Databases

Description of Methods Used to Collect/Select the Evidence
Guideline Review
The Registered Nurses’ Association of Ontario (RNAO) guideline development team’s project coordinator searched an established list of Web sites for guidelines and other relevant content published between June 2005 and April 2014. This list was compiled based on knowledge of evidence-based practice Web sites, recommendations from the literature, and key Web sites related to person- and family-centred-care practices. Furthermore, expert panel members were asked to provide guidelines from their own personal libraries.

Guideline Search Strategy Structured Web Site Search
A member of the RNAO guideline development team (project coordinator) searched an established list of Web sites for guidelines.
Guidelines were selected based on the following criteria:

● Focus on topic of person-centred care (terms include: person- or client- or patient- or family-centred or -oriented or -focused or
-directed care or practice or intervention, relationships or partnerships) which includes:
● Defining concepts, dimensions, components, or core processes of which includes facilitators and barriers
● Health-care practices or behaviours demonstrating
● Effective models of
● Basic Curricula or ongoing education/training programs or education needs for knowledge and skills to practice person centred care
● Organization or health-system supports or responsibilities for implementation
● Published no earlier than June 2005
● Published in English, national and international in scope
● Accessible for retrieval Hand Search
RNAO expert panel members were asked to review personal libraries to
identify and submit potentially relevant guidelines. Guidelines submitted for consideration by RNAO expert panel members were integrated into the retrieved list of guidelines if they had not been identified by the on-line guideline search and met the inclusion criteria.
Systematic Review
A comprehensive search strategy was developed by RNAO’s research team and a health sciences librarian, based on inclusion and exclusion criteria created with the RNAO expert panel. A search for relevant articles in English published between June 2005 and April 2014 was applied to the following databases: Cumulative Index to Nursing and Allied Health (CINAHL), Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews (CDSR), Database of Abstracts of Reviews of Effects (DARE), Education Resources Information Center (ERIC), EMBASE, Joanna Briggs Institute, MEDLINE, MEDLINE in Progress, and PsycINFO. In addition to this systematic search, panel members were asked to review

personal libraries for key articles not found through the above search strategies.
Detailed information about the search strategy for existing guidelines, including the list of Web sites searched and inclusion criteria, is available in the guideline search strategy document (see the “Availability of Companion Documents” field).
Once articles were retrieved, two RNAO Best Practice Guideline (BPG) nursing research associates (nurses holding master’s degrees) independently assessed the eligibility of the studies according to established inclusion/exclusion criteria. The RNAO’s BPG program manager, involved in supporting the RNAO expert panel, resolved disagreements.

Number of Source Documents
Four guidelines and 42 studies were included. See the flow diagrams in Appendix C in the original guideline document for more information on the review process.

Methods Used to Assess the Quality and Strength of the Evidence
Weighting According to a Rating Scheme (Scheme Given)

Rating Scheme for the Strength of the Evidence
Levels of Evidence
Ia Evidence obtained from meta-analysis or systematic reviews of randomized controlled trials, and/or synthesis of multiple studies primarily of quantitative research.
Ib Evidence obtained from at least one randomized controlled trial.
IIa Evidence obtained from at least one well-designed controlled study without randomization.

Methods Used to Analyze the Evidence
Systematic Review with Evidence Tables

Description of the Methods Used to Analyze the Evidence
Guideline Review
Members of the expert panel critically appraised five international guidelines using the Appraisal of Guidelines for Research and Evaluation Instrument II (Brouwers et al. 2010).
Systematic Review
Quality appraisal scores for 9 articles (a random sample of 20% of articles eligible for data extraction and quality appraisal) were independently assessed by the Registered Nurses’ Association of Ontario (RNAO) Best Practice Guideline (BPG) research associates. Acceptable inter-rater agreement (kappa statistic, K=0.83) justified proceeding with quality appraisal and data extraction by dividing the remaining studies equally between the two research associates. A final summary of literature findings was completed. The comprehensive data tables and summary were provided to all expert panel members for review and discussion.

A review of the most recent literature and relevant guidelines published between June 2005 and April 2014 resulted in an update of the existing recommendations as well as the inclusion of new recommendations.
A complete bibliography of all full text articles screened for inclusion is available (see the “Availability of Companion Documents” field).

Methods Used to Formulate the Recommendations
Expert Consensus

Description of Methods Used to Formulate the Recommendations
Guideline Development Process
For this revised guideline, the Registered Nurses’ Association of Ontario (RNAO) assembled a panel of experts who represent a range of sectors and practice areas (see the “Composition of Group That Authored the Guideline” field). A systematic review of the evidence was based on the purpose and scope of the original guideline, Client Centred Care, and the revision supplement, and was supported by five clinical questions. The systematic review captured relevant literature and guidelines published between June 2005 and April 2014. The following research questions were established to guide the systematic review:

1. What is person-centred care?
a. How is person-centred care defined?
b. What are the components of person-centred care?
2. What nursing or health-care provider behaviours demonstrate a person-centred approach during the delivery (assessment, planning, management, and evaluation) of care to a person?
3. What are the evidence-based models of care delivery that demonstrate effective outcomes and support person-centred care?

a. Components of effective person-centred care models?
b. Enablers to the provision of the person-centred care in the model?
c. Barriers to the provision of person-centred care in the model?

d. Impact on satisfaction with care within all health settings?
2. What components of person-centred care should be taught in basic curricula or ongoing professional education programs?
3. What organizational or system structures support successful implementation of person-centred care?

The expert panel’s mandate was to review the original Guideline and the revision supplement in light of the new evidence to ensure the continuing validity, appropriateness, and safety of the recommendations. This new revised Guideline is the result of the expert panel’s work to integrate the most current and best evidence into the recommendations with the supporting evidence from original Guideline and the revision supplement (where applicable).

Rating Scheme for the Strength of the Recommendations
Not applicable

Cost Analysis
A formal cost analysis was not performed and published cost analyses were not reviewed.

Method of Guideline Validation
External Peer Review Internal Peer Review

Description of Method of Guideline Validation
Stakeholder reviewers for the Registered Nurses’ Association of Ontario (RNAO) guidelines are identified in two ways. First, stakeholders are recruited through a public call issued on the RNAO Web site

(http://rnao.ca/bpg/get-involved/stakeholder ). Second, key individuals and organizations with expertise in the guideline topic area are identified by the RNAO guideline development team and expert panel and are directly invited to participate in the review.
Reviewers are asked to read a full draft of the guideline and participate in the review prior to its publication.
Stakeholder feedback is submitted on-line by completing a survey questionnaire. The stakeholders are asked the following questions about each recommendation:

● Is this recommendation clear?
● Do you agree with this recommendation?
● Does the evidence support this recommendation?
● Does this recommendation apply to all roles, regions and practice settings?

The survey also includes opportunity to include comments and feedback for each section of the guideline.
Survey submissions received are compiled and feedback is summarized by the RNAO guideline development team. The RNAO expert panel reviews and considers all feedback and, if necessary, modifies the guideline content and recommendations prior to publication to address the feedback received.

Evidence Supporting the Recommendations

Type of Evidence Supporting the Recommendations
The type of supporting evidence is identified and graded for each recommendation (see the “Major Recommendations” field).

Benefits/Harms of
Implementing the Guideline Recommendations

Potential Benefits
This evidence-based approach, combined with a perspective that recognizes the place of the person at the centre of heath care, will improve individuals’ experience of and satisfaction with the care and services provided within the health system.

Potential Harms
Not stated

Qualifying Statements

Qualifying Statements
● These guidelines are not binding on nurses or the organizations that employ them. The use of these guidelines should be flexible, and based on individual needs and local circumstances. They neither constitute a liability nor discharge from liability. While every effort has been made to ensure the accuracy of the contents at the time of publication, neither the authors nor the Registered Nurses’ Association of Ontario (RNAO) gives any guarantee as to the accuracy of the information contained in them or accepts any liability with respect to loss, damage, injury, or expense arising from any such errors or omission in the contents of this work.
● This nursing Best Practice Guideline (BPG) is a comprehensive document that provides resources for evidence-based nursing practice.

It is not intended to be a manual or “how to” guide, but rather a template to guide best practices associated with enhancing person- and family-centred care and the partnerships between health-care providers, the person, and their family within the context of the therapeutic relationship to manage health. The Guideline should be reviewed and applied in accordance with both the needs of individual organizations or practice settings and the needs and preferences of persons and their families accessing the health system for care and services. In addition, the Guideline offers an overview of appropriate structures and supports for providing the best possible evidence-based care.

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Implementation of the Guideline

Description of Implementation Strategy
Implementation Strategies
Implementing guidelines at the point of care is multi-faceted and challenging; it takes more than awareness and distribution of guidelines to get people to change how they practice. Guidelines must be adapted for each practice setting in a systematic and participatory way, to ensure recommendations fit the local context. The Registered Nurses’ Association of Ontario (RNAO) Toolkit: Implementation of Best Practice Guidelines provides an evidence-informed process for doing this (see Appendix G in the original guideline document).
The Toolkit is based on emerging evidence that successful uptake of best practice in health care is more likely when:

● Leaders at all levels are committed to supporting guideline implementation
● Guidelines are selected for implementation through a systematic, participatory process
● Stakeholders for whom the guidelines are relevant are identified and engaged in the implementation
● Environmental readiness for implementing guidelines is assessed
● The guideline is tailored to the local context
● Barriers and facilitators to using the guideline are assessed and addressed
● Interventions to promote use of the guideline are selected

● Use of the guideline is systematically monitored and sustained
● Evaluation of the guideline’s impact is embedded in the process
● There are adequate resources to complete all aspects of the implementation

The Toolkit uses the “Knowledge-to-Action” framework to demonstrate the process steps required for knowledge inquiry and synthesis. It also guides the adaptation of the new knowledge to the local context and implementation. This framework suggests identifying and using knowledge tools, such as guidelines, to identify gaps and to begin the process of tailoring the new knowledge to local settings.
RNAO is committed to widespread deployment and implementation of the Best Practice Guidelines (BPGs). The RNAO uses a coordinated approach to dissemination, incorporating a variety of strategies, including: 1) the Nursing Best Practice Champion Network®, which develops the capacity of individual nurses to foster awareness, engagement, and adoption of BPGs; 2) nursing order sets which provide clear, concise, actionable intervention statements derived from the BPGs’ practice recommendations that can be readily embedded within electronic medical records, but may also be used in
paper-based or hybrid environments; and 3) the Best Practice Spotlight Organization® (BPSO®) designation, which supports implementation at the organization and system levels. BPSOs® focus on developing
evidence-based cultures with the specific mandate to implement, evaluate, and sustain multiple RNAO BPGs. In addition, the RNAO offers
capacity-building learning institutes on specific BPGs and their implementation annually.
Information about RNAO implementation strategies can be found at:

● RNAO Best Practice Champions Network®: www.RNAO.ca/bpg/get-involved/champions
● RNAO’s nursing order sets: http://rnao.ca/bpg/initiatives/nursing-order-sets
● RNAO Best Practice Spotlight Organizations: www.RNAO.ca/bpg/bpso
● RNAO capacity-building learning institutes and other professional development opportunities: www.RNAO.ca/events

Implementation Tools
Audit Criteria/Indicators Foreign Language Translations

Patient Resources Resources
Tool Kits

Institute of Medicine (IOM) National Healthcare Quality Report Categories

IOM Care Need
End of Life Care Getting Better Living with Illness Staying Healthy

IOM Domain
Effectiveness
Patient-centeredness

Identifying Information and Availability

Bibliographic Source(s)

Adaptation
Not applicable: The guideline was not adapted from another source.

Date Released
2002 Jul (revised 2015 May)

Guideline Developer(s)
Registered Nurses’ Association of Ontario – Professional Association

Source(s) of Funding
Funding was provided by the Ontario Ministry of Health and Long Term Care.

Guideline Committee
Registered Nurses’ Association of Ontario Expert Panel

Composition of Group That Authored the Guideline
Expert Panel Members
Eleanor Rivoire, RN, BScN, MSc (Pediatrics)
Expert Panel Co-Chair
Executive Vice President and Chief Nursing Executive Kingston General Hospital
Kingston, Ontario
Sholom Glouberman, PhD Expert Panel Co-Chair President
Patients Canada Toronto, Ontario
Danielle Bender, MA Research Associate
Saint Elizabeth Health Care Markham, Ontario
Anna Cooper, RN, BScN, MN Clinical Practice Leader – Pediatrics BPSO Lead
Bayshore Healthcare Ltd. Mississauga, Ontario
Michael Creek
Director of Strategic Initiatives Working for Change
Toronto, Ontario
Tracey DasGupta, RN, BScN, MN Director of Interprofessional Practice Sunnybrook Health Sciences Centre Toronto, Ontario
Denise Dodman, RN, BScN, MScN, GNC(C) Patient Advocate
Bluewater Health Sarnia, Ontario
Cathryn Hoy, RN
Registered Nurse and ONA Representative Kingston General Hospital
Kingston, Ontario
Karima Karmali, RN, BScN, MBA
Director, Centre for Innovation and Excellence
in Child & Family-Centred Care The Hospital for Sick Children Toronto, Ontario
Julie Lapointe, OT, PhD
Director of Professional Practice/ Directrice de la pratique professionnelle
Canadian Association of Occupational Therapists/ Association canadienne des ergothérapeutes Ottawa, Ontario
Lisa Prowd, RN, BScN Public Health Nurse Grey Bruce Health Unit Owen Sound, Ontario
Caroline Rafferty, RN, BScN, MHSc Executive Director
Two Rivers Family Health Team Inc. Cambridge, Ontario
Simret Tewolde, RPN
Registered Practical Nurse and RPNAO Representative Bridgepoint Health
Toronto, Ontario
Agnes Wong, RN, BScN, MN
Chief of Professional Practice and Quality Yee Hong Centre for Geriatric Care Toronto, Ontario

Financial Disclosures/Conflicts of Interest
Declarations of interest that might be construed as constituting an actual, potential or apparent conflict were made by all members of the Registered Nurses’ Association of Ontario (RNAO) expert panel, and members were asked to update their disclosures regularly throughout the guideline development process. Information was requested about financial, intellectual, personal and other interests and documented for future reference. No limiting conflicts were identified.
Further details are available from the RNAO.

Guideline Endorser(s)
Accreditation Canada – Nonprofit Organization
Canadian Association for People-Centred Health – Nonprofit Organization Canadian Nurses Association – Professional Association
Canadian Patient Safety Institute – Nonprofit Organization
Health Quality Ontario – State/Local Government Agency [Non-U.S.] Patients Canada – Nonprofit Organization

Guideline Status
This is the current release of the guideline. This guideline updates previous versions:
Registered Nurses Association of Ontario (RNAO). Client centered care supplement. Toronto (ON): Registered Nurses Association of Ontario (RNAO); 2006 Mar. 8 p. [38 references]
Registered Nurses Association of Ontario (RNAO). Client centred care. Toronto (ON): Registered Nurses Association of Ontario (RNAO); 2002 Jul. 70 p. [63 references]
This guideline meets NGC’s 2013 (revised) inclusion criteria.

Guideline Availability
Available in English and French from the Registered Nurses’ Association of Ontario (RNAO) Web site.

Availability of Companion Documents
The following are available:

● Registered Nurses’ Association of Ontario – Nursing Best Practice Guidelines Program: person- and family-centred care. Guideline search strategy. Toronto (ON): Registered Nurses Association of Ontario (RNAO); 2015 May. 7 p. Available from the RNAO Web site .
● Registered Nurses’ Association of Ontario – Nursing Best Practice Guidelines Program: person- and family-centred care. Bibliography. Toronto (ON): Registered Nurses Association of Ontario (RNAO); 2015 May. 4 p. Available from the RNAO Web site .
● Toolkit: implementation of best practice guidelines. Second edition. Toronto (ON): Registered Nurses’ Association of Ontario (RNAO); 2012 Sep. 154 p. Available from the RNAO Web site .

The appendices of the original guideline document contain the “Eight Dimensions of Patient-Centered Care”, a list of resources and Web sites, and a guide to “Common Themes in Patients’ Charters of Rights.” Structure, process and outcome indicators for monitoring and evaluating the guideline are available in Table 8 in the original guideline document.

Patient Resources
The following is available:

● Person- and family-centred care. Health education fact sheet. Toronto (ON): Registered Nurses’ Association of Ontario (RNAO). 2 p. Available from the Registered Nurses’ Association of Ontario (RNAO) Web site .

Please note: This patient information is intended to provide health professionals with information to share with their patients to help them better understand their health and their diagnosed disorders. By providing access to this patient information, it is not the intention of NGC to provide specific medical
advice for particular patients. Rather we urge patients and their representatives to review this material and then to consult with a licensed health professional for evaluation of treatment options suitable for them as well as for diagnosis and answers to their personal medical questions. This patient information has been derived and prepared from a guideline for health care professionals included on NGC by the authors or publishers of that original guideline. The patient information is not reviewed by NGC to establish whether or not it accurately reflects the original guideline’s content.

NGC Status
This NGC summary was completed by ECRI on December 17, 2003. The information was verified by the guideline developer on January 16, 2004. This summary was updated by ECRI on June 22, 2006. This summary was updated again by ECRI Institute on December 11, 2015. The updated information was verified by the guideline developer on January 4, 2016.

Copyright Statement
With the exception of those portions of this document for which a specific prohibition or limitation against copying appears, the balance of this document may be produced, reproduced, and published in its entirety only, in any form, including in electronic form, for educational or non-commercial purposes, without requiring the consent or permission of the Registered Nurses’ Association of Ontario, provided that an appropriate credit or citation appears in the copied work as follows:
Registered Nurses’ Association of Ontario. (2015). Person- and family-centred care. Toronto (ON): Registered Nurses’ Association of Ontario.

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