- Email: [email protected]
Identifying Needs for Self-management Interventions for Adults With CKD and Their Caregivers: A Qualitative Study
Original Investigation
Identifying Needs for Self-management Interventions for Adults With CKD and Their Caregivers: A Qualitative Study Maoliosa Donald, Heather Beanlands, Sharon Straus, Paul Ronksley, Helen Tam-Tham, Juli Finlay, Jennifer MacKay, Meghan Elliott, Gwen Herrington, Lori Harwood, Chantel A. Large, Claire L. Large, Blair Waldvogel, Dwight Sparkes, Maria Delgado, Allison Tong, Allan Grill, Marta Novak, Matthew T. James, K. Scott Brimble, Susan Samuel, and Brenda R. Hemmelgarn Rationale & Objective: Fostering the ability of patients to self-manage their chronic kidney disease (CKD), with support from caregivers and providers, may slow disease progression and improve health outcomes. However, little is known about such patients’ needs for selfmanagement interventions. We aimed to identify and describe the needs of adults with CKD and informal caregivers for CKD self-management support. Study Design: Descriptive qualitative study using semi-structured interviews and focus groups. Setting & Participants: 6 focus groups (37 participants) and 11 telephone interviews with adults with CKD (stages 1-5, not on renal replacement therapy) and informal caregivers from across Canada. Analytic Approach: Thematic analysis. Results: 3 major themes were identified: (1) empowerment through knowledge (awareness
I
and understanding of CKD, diet challenges, medication and alternative treatments, attuning to the body, financial implications, mental and physical health consequences, travel and transportation restrictions, and maintaining work and education), (2) activation through information sharing (access, meaningful and relevant, timing, and amount), and (3) tangible supports for the health journey (family, community, and professionals). Limitations: Participants were primarily white, educated, married, and English speaking, which limits generalizability.
Correspondence to B.R. Hemmelgarn (brenda. [email protected]) Am J Kidney Dis. XX(XX): 1-9. Published online Month X, XXXX. doi: 10.1053/ j.ajkd.2019.02.006
© 2019 by the National Kidney Foundation, Inc.
Conclusions: There are opportunities to enhance CKD self-management support by addressing knowledge pertinent to living well with CKD and priority areas for sharing information and providing tangible support. Future efforts may consider the development of innovative CKD self-management support interventions based on the diverse patient and caregiver needs identified in this study.
ndividuals with chronic kidney disease (CKD) must balance medical management of their kidney disease and multiple morbid conditions with their day-to-day responsibilities.1 Self-management may delay CKD progression,2 improve quality of life, and positively influence health outcomes3; however, it can be challenging.4,5 Selfmanagement is a complex set of processes and tasks that involves developing knowledge, skills, and confidence to manage the disease; identifying and accessing resources and supports; and learning to cope with the condition, including in terms of its impact on an individual’s life and the emotional consequences of the illness.3 Three research priority activities involving patients, researchers, clinicians, and decision makers in the United States, Australia, and Canada identified the need for strategies to help patients self-manage their CKD as one of the top 10 research priorities.6-8 However, there is limited information regarding self-management interventions for patients with CKD, particularly those not receiving renal replacement therapy.9-11 Our recent scoping review identified substantial research gaps because only 20% of studies incorporated a theory or framework related to behavior change or were based on clinical practice guidelines, and <1% involved patients in the design of the AJKD Vol XX | Iss XX | Month 2019
Complete author and article information appears at end of article text.
intervention.11 This exploratory qualitative study is part of a larger multiphase mixed-methods study to codevelop, implement, and evaluate an intervention to enhance selfmanagement of CKD.12 Using a pragmatic approach, we aimed to describe needs of adults with CKD and their caregivers for CKD self-management support (ie, interventions, services, and resources). Methods Participants and Setting Individuals were eligible to participate if they were English speaking, 18 years or older, able to provide informed consent, and aware of their diagnosis of CKD (stages 1-5, not currently on dialysis, or prior kidney transplant recipient)13 regardless of cause or duration of CKD. Informal caregivers (eg, family members and friends) of individuals with CKD were also eligible. Both patients and caregivers were able to participate in the same focus group because both are highly involved in the management of kidney disease, although dyads of patients and caregivers were not a requirement. Participants from across Canada were recruited through various methods, including CKD and primary care clinics in Alberta and Ontario (through 1
Original Investigation newsletters and posters), the Kidney Foundation of Canada, and a national network, Canadians Seeking Solutions and Innovations to Overcome CKD (Can-SOLVE CKD) using social media (eg, Twitter, Facebook, and websites). Individuals were invited to participate in 1 of 6 focus groups held in nonclinical settings. A telephone interview was offered for participants unable to attend a face-to-face focus group. Participants were purposively selected using a sampling grid to provide maximum diversity of age, ethnic background, sex, CKD severity, urban/rural residence, and duration of CKD diagnosis. Ethics approval was obtained from the 3 institutions involved (University of Calgary, Alberta [REB #17-0908]; St. Michael’s Hospital, Ontario [REB #17-238]; and London Health Sciences Centre, Ontario [REB #109627]). Data Collection We used a semi-structured interview guide (Item S1) and invited participants to respond to questions about: (1) their experiences managing CKD, (2) what they considered important to support self-management, and (3) how they used self-management strategies provided by health care providers (HCPs) to manage their CKD. Previous work on patient perspectives regarding self-management1 and the Self- and Family Self-management Framework14 informed the interview guide. A facilitator (M.Do.) with experience in qualitative methods led the 90-minute focus groups and 60-minute telephone interviews, with informed consent obtained before the session. A note taker was present at all focus groups to take notes to supplement audio recordings. All sessions were digitally audiorecorded and transcribed verbatim. We conducted focus groups and telephone interviews until we reached data saturation (ie, the point at which little or no new information emerged). Data Analysis Transcripts were entered into NVivo11 (QSR International Pty Ltd, version 11, 2016) to facilitate data management and analysis (eg, store, review, code, and search data). We used thematic analysis and systematically coded and identified themes inductively from the data.15 The focus of the analysis was to identify and describe the needs of patients and informal caregivers regarding self-management support. To ensure that the range and depth of the data were reflected in the analysis, transcripts were independently analyzed by 4 research team members experienced in qualitative research (M.Do., J.F., H.T., and J.M.). First, the research team members familiarized themselves with the data by reviewing the initial focus group and 2 telephone interviews and inductively generated initial codes. A preliminary coding scheme was then developed and applied to subsequent transcripts, revisiting and refining the coding scheme as necessary through regular team discussions. Next, research team members independently developed
2
preliminary themes. After team discussion, themes were refined and checked against coded extracts and the overall data set to identify relationships and patterns. Finally, the research team members along with 2 of our Can-SOLVE CKD patient partners (G.H. and D.S.), not included as study participants, collaboratively revised the themes until agreement. Notes were reviewed throughout the analysis process to inform context and insights from the focus groups and telephone interviews. We reported our study according to the Consolidated Criteria for Reporting Qualitative studies (COREQ) checklist.16 Results Participant Demographics Six focus groups (3 each in the provinces of Alberta and Ontario) involving 37 participants and 11 telephone interviews from participants across Canada were conducted, for a total of 48 participants (33 patients and 15 caregivers, with 9 patient-caregiver dyads). The number of focus group participants ranged from 2 to 9. We had an 85% attendance rate for the focus groups, with reasons for nonattendance most commonly due to illness. Our sample included a diverse range of demographic and clinical characteristics through planned recruitment; therefore, we did not need to specifically recruit or dismiss participants. The majority of participants were women (62%), younger than 75 years (79%), and white (67%), with a similar distribution of urban and rural locations (Table 1). Patients were equally represented across CKD stages 2 to 5, with the majority (70%) diagnosed in the past 10 years. Thematic Analysis We identified 3 main themes that reflected participant needs for CKD self-management support: empowerment through knowledge (awareness and understanding of CKD, diet challenges, medication and alternative treatments, attuning to the body, financial implications, mental and physical health consequences, travel and transportation restrictions, maintaining work, and education), activation through information sharing (access, meaningful and relevant, timing, and amount), and tangible supports for the health journey (family, community, and professionals). Overall, patient participants wanted to “live well with CKD,” and both patients and their caregivers wanted support to help them adjust to the “new normal” and not just “live with the illness.” Quotes throughout the text are presented as stated by participants without modification. Themes and illustrative participant quotes are provided in Box 1. Figure 1 provides a visualization of the 3 themes. To self-manage CKD, tangible supports and activation through information sharing are foundational to gaining information to live well with CKD.
AJKD Vol XX | Iss XX | Month 2019
Original Investigation Table 1. Participant Characteristics Patients Characteristics No. of participants 33 Female sex 20 (60%) Age <50 y 10 (30%) 50-64 y 8 (24%) 65-74 y 8 (24%) ≥75 y 7 (22%) Marital status Common law 2 (6%) Divorced 2 (6%) Married 23 (70%) Single 5 (15%) Widowed 1 (3%) Population of geographic location <500,000 (rural) 13 (39%) ≥500,000 (urban) 20 (61%) Level of education Primary (grade ≤ 12) 7 (21%) Secondary (college, university, 21 (64%) trade school) Postsecondary graduate 4 (12%) No response 1 (3%) Level of employment Full time 9 (27%) Part time 6 (18%) Other (home duties, unemployed, 18 (55%) student, retired) Ethnicity White 21 (64%) Other (eg, indigenous, Asian, 12 (36%) black, Hispanic) Self-reported Patient Clinical Characteristics Duration of CKD diagnosis ≤5 y 13 (40%) 6-10 y 10 (30%) ≥11 y 9 (27%) Unknown 1 (3%) Cause of CKD Diabetes and/or high blood pressure 12 (37%) GN (eg, IgA nephropathy, lupus) 4 (12%) Other (eg, sepsis, hereditary, 12 (36%) obstruction) Unknown 5 (15%) eGFR 9 (27%) 30-60 mL/min/1.73 m2 7 (21.5%) 15-29 mL/min/1.73 m2 7 (21.5%) <15 mL/min/1.73 m2 Unknown 10 (30%) Perceived health status Excellent 2 (6%) Very good 3 (9%) Good 16 (49%) Fair 9 (27%) Poor 3 (9%)
Caregivers 15 10 (67%) 0 8 4 3
(0%) (53%) (27%) (20%)
2 (13%) 1 (7%) 12 (80%) 0 (0%) 0 (0%) 11 (73%) 4 (26%) 3 (20%) 9 (60%) 2 (13%) 1 (7%) 5 (33%) 1 (7%) 9 (60%) 11 (73%) 4 (27%)
Note: n = 48. Abbreviations: CKD, chronic kidney disease; eGFR, estimated glomerular filtration rate; GN, glomerulonephritis; IgA, immunoglobulin A.
AJKD Vol XX | Iss XX | Month 2019
Themes Empowerment Through Knowledge Participants had questions they wanted answered by their HCPs and reported that they needed support in the following areas to feel confident and capable to “look after myself.” Awareness and Understanding of CKD. Participants believed that awareness of CKD was the “first step” for patients to live well with CKD. They reported that lack of awareness prevented them from engaging in selfmanagement activities. This was relevant to some patients who were doubtful or in denial that they had CKD: “am I a CKD patient or not?” and “I don’t feel like I have the disease.” Patients with an absence of symptoms stated that they continued to “live life” in a way that resulted in negative health outcomes. Some patients reported “regret” that they did not actively engage in managing the disease earlier. Even under the care of a physician, both patients and their caregivers thought that support and education received may not be relevant to their kidney diagnosis (eg, hereditary causes), stating there are “several types of kidney disease” and some of us “don’t exist” to HCPs. For participants to “buy in” to having kidney disease, they expressed the need for personalized information for a variety of topics. These included the causes of CKD, risk factors for CKD and how to prevent them, CKD status and how to slow progression, and available treatments (pharmacologic and nonpharmacologic) at any stage of the disease, not just when they are in kidney failure. Diet Challenges. Diet was considered a “big factor” for living well with CKD. Participants reported that diet restrictions posed multiple challenges (eg, eating out, attending social gatherings, and understanding food labels) and required increased effort on the part of the patient and caregiver (eg, preparing separate meals, grocery shopping, and making affordable meals). Participants mentioned they “wished somebody told them sooner” about what they “can eat” more so than what they “can’t eat.” Those with CKD and diabetes stated that it was “tricky” to manage the “opposing” kidney and diabetic diets, with no resources to assist in learning how to balance both. To address these challenges, they suggested “tips and tricks” for a personalized diet such as a guidebook or other tools including grocery lists, cooking or food apps, or YouTube cooking videos. Medication and Alternative Treatments. Participants wanted to know about “typical” medications for managing CKD, including side effects and interactions between medications. Many patients reported being on treatment with numerous medications, resulting in a cascade of negative health consequences. Others reported being “fearful” of medication side effects and commented that it was “worse than the disease.” For some, this meant looking for other alternatives or “avenues” to help them deal with symptoms (eg, pain, fatigue, depression, and stress), including seeing a naturopath, massage therapist, 3
Original Investigation Box 1. Themes and Selected Illustrative Quotations Theme 1: Empowerment Through Knowledge Awareness of and understanding CKD • “It affected my life tremendously, especially when I was first diagnosed. Before that I didn’t have any idea nor inclination that I was sick.” (INT, Patient 49) • “I need to have questions addressed, I need to know why and what can I do.” (INT, Patient 13) • “A lot of people don’t think ‘I’m fine’. And even myself, I’m fine. I’m okay. But then somewhere down the line, they [wife] start having some problems and saying, ‘Oh, I wish I listened.’ Next thing you know, you’ve got a problem and you’re saying, ‘Why does this happen?’” (FG 6, Caregiver 6) Diet challenges • “You can tell somebody what they can’t eat, but then when you don’t provide them with alternatives, you kind of get stuck.” (INT, Patient 43) • “I did like a protein thing and I didn’t realize I was damaging (my kidneys) further. So, I dropped 20% (function) in a year. I wish somebody had told me. Don’t do that.” (FG 4, Patient 7) • “Diet becomes a frustration for me. I can’t have this, I can’t have that. I need clearance of everything that goes in my mouth!” (FG 4, Patient 2) Medication and alternative treatments • “Taking one pill could cause something else with another pill or could cause something in your kidneys or this pill isn’t good for your kidneys.” (FG 6, Patient 7) • “My osteopath has been able to help, I have a lot of swelling in my kidneys so he’s been able to help me manage that pain.” (INT, Patient 23) Attuning to the body • “I was put on a high dosage of steroids, so I was feeling a lot of side effects. I had very bad stomach aches, I was tired every day, and I just couldn’t get to work every day.” (INT, Patient 49) • “I find that I do get like numbness in my legs and stuff like that. Being tired all the time, that sort of thing.” (INT, Patient 17) Financial implications • “It’s all my [financial] responsibility as a husband.” (INT, Patient 33) • “The financial impact … after working full time and then not working anymore, it takes its toll.” (FG 3, Patient 5) Mental and physical health consequences • “I just had a team lunch and there is a big discussion around where we are going to eat because there are only certain things I can eat. So, you are always kind of singled out and a little bit of stigma around it.” (INT, Patient 17) • “She [doctor] gives me this booklet to read and I sat there and about 2 minutes into it, I couldn’t stop crying. I was thinking he [husband] was going to die, this was going to happen, that was going to happen.” (FG 3, Caregiver 5) • “The nephrologist tells me, you know, you got to exercise, I want you outside and exercising at least 3 times a week. Well with a bad knee that’s not possible.” (FG 5, Patient 5) Travel and transportation restrictions • “It’s like you are restricted. I can’t go away if I feel like going away. There’s the thought what if this happens, so the fear.” (FG 4, Patient 5) • “The fact that you have to get to doctors, get to the hospital, sometimes you can’t drive because of the drugs.” (INT, Patient 29) Maintaining work and school • “I never integrated it [CKD] into my life. It was just so difficult for me so I quit work hoping I can get a little more settled.” (FG 3, Patient 7) • “I have had this disease since birth it has been with me my entire life, the impact on my schooling … caused me to miss quite a lot of school.” (INT, Patient 43) Theme 2: Activation Through Information Sharing Access to information • “If there was a checklist and it has the questions … and you take the darn list with you and ask them [doctor].” (FG 6, Caregiver 7) • “The doctors don’t like you to have access to your information … . It would be easier if I had like some sort of patient portal that I can go in and get the information.” (INT, Patient#17) • “I think basically if a patient attends a kidney clinic or they go to the kidney doctor, I think if there is information there. If you can’t access it [clinic], mail is about the only way, I mean I do emails for instance, it’s hard because in my particular case too, I have macular degeneration.” (INT, Patient 48) (Continued)
4
AJKD Vol XX | Iss XX | Month 2019
Original Investigation Box 1 (Cont'd). Themes and Selected Illustrative Quotations Meaningful and relevant information • “Everyone deals with information differently and how you filter, news affects everybody differently.” (FG 4, Patient 2) • “Like a guide book because the one they gave me was very, very general and it doesn’t really [help], it helps to give me some information but could be more because most of the things I learned it on my own.” (INT, Patient 49) Timing of information • “Having access to information regardless of stage is vital, more than vital … you have to tailor because Google and all these apps are great and helpful, but I get really lost in the information, because it doesn’t apply to me.” (FG 4, Patient 2) • “If we are looking at developing a toolbox for people who are just diagnosed, there are stages of understanding, when I was first diagnosed I was completely overwhelmed and very sick.” (INT, Patient 23) Amount of information • “There is a wealth of information out there and you become so overwhelmed.” (FG 1, Caregiver 9) • “I’m not blaming anyone but I did not get any information that I felt would help me deal with the kidney disease.” (FG 1, Caregiver 6) Theme 3: Tangible Supports for the Health Journey Support provided by family and community • “When the patients talk to each other and shared some of those things (very good ideas on how to manage), they were extremely helpful.” (FG 5, Caregiver 4) • “You can share your challenges (with peers) and you can hear other people going through similar things and you don’t feel as isolated.” (FG 3, Patient 6) • “I shared my experience within the church community.” (INT, Patient 49) Support provided by professionals • “We’ve talked to a dietician lots of times but it’s just a matter of saying I’d like to see a dietician.” (FG 5, Patient 3) • “I mean not everybody has a plan but some people do and some people don’t, but having access to know what is available out there and getting help for things from a group of people or like a social worker that can answer some of those questions.” (INT, Patient 29) Abbreviations: CKD, chronic kidney disease; FG, focus group; INT, telephone interview.
traditional Chinese medicine practitioner, medicine healer, and osteopath. Some participants also stated that they partook in yoga, tai chi, aromatherapy, and meditation to help manage. Attuning to the Body. Patient participants reported a spectrum of symptom experiences, from being asymptomatic to experiencing disabling symptoms. They expressed that their disease severity did not necessarily correspond with symptoms but that knowing the possible symptoms at any stage of CKD would help them cope. Patients without symptoms expressed a desire to know the “signals” of CKD, such as the physical changes to their body. Those experiencing symptoms identified this as an indication that their kidneys were “not doing so great” or a possible result of the medications they were taking. For some, their symptoms motivated them to take or to continue an active role in managing their disease, for example, to “follow the rules.” Financial Implications. Participants expressed concern about financial implications related to lack of insurance coverage for medications, when they had to “fight hard to get a drug.” Others stated that they incurred costs associated with trying to maintain a healthy lifestyle, such as weight loss programs, purchasing groceries for their CKD diet, or attending health care appointments not covered under their health plan. Participants reported that these AJKD Vol XX | Iss XX | Month 2019
concerns are rarely addressed by HCPs, suggesting that resources should be available early in their diagnosis. Mental
and
Physical
Health
Consequences.
Participants stated that coping with the consequences of CKD, such as social isolation, disease stigma, and depression, were key areas to be addressed to live well with CKD. They reported that mental health was not “talked about” and suggested the development of tools to identify and assist with initiating conversations about mental health and well-being with their HCPs. Participants were told by HCPs that physical health was important and that they need to exercise and lose weight. Although participants reported that this advice was useful, they commented that providers did not provide a specific “exercise prescription” that was personalized to their physical needs (eg, osteoarthritis of the knees or struggling with exhaustion). Travel and Transportation Restrictions. Participants reported that they felt “restricted” due to travel insurance costs “not covered” and the possibility of their health deteriorating while away. For those who traveled to medical appointments or work, some reported that their health limited their ability to drive (eg, blindness due to diabetes) or medication side effects (eg, drowsiness). They relied on family and friends and reported feeling “guilty” for the perceived burden placed on these supports. For 5
Original Investigation
Work/ Education Finances
Symptoms
Mental/ Physical Health
Empowerment Through Knowledge
Medications & Alternative Treatments
Awareness / Understanding of CKD
Diet
Travel
Tangible (practical) supports
Activation through information sharing
Figure 1. Living well with chronic kidney disease (CKD),
some participants, the loss of their ability to drive, “it’s been taken away,” left them feeling disempowered. Participants wanted guidance regarding travel and transportation because they believed it was important to their self-esteem and lifestyle. Maintaining Work and Education. Many patient participants reported that work and/or education played an important part in their lives. They indicated that work was a source of financial livelihood, and they felt financially “responsible” for their family. Students with CKD stated that they struggled with having to miss classes due to symptoms and numerous medical appointments. Some patient participants commented that they wanted to keep their diagnosis confidential and not share with employers or teachers, “appear as if nothing is wrong,” while others wanted to share their diagnosis. However, they noted that they were dismissed, “you look fine.” Participants stated that they required information and resources to help them manage these 2 areas to maintain working and attending school. Activation Through Information Sharing
Participants stated that information sharing played a big factor in “taking action,” but it needed to be accessible, 6
relevant, meaningful, and timely and provided in the appropriate “amount” based on individual preferences. Access to Information. Participants stated that information should be available through a combination of delivery modes, such as face to face, telephone, paper, email, webinars, and online. They also spoke about the difficulty accessing information, “I had to research it (CKD information) on my own” or the lack of access to their “health record” (eg, laboratory reports). It was suggested that information be available in the community setting (eg, primary care physician’s office or at home). Meaningful and Relevant Information. Participants wanted “credible” information, tailored to their specific medical and lifestyle preferences. They indicated that they preferred information in an “easy language” with no “jargon,” and they stressed the importance of incorporating cultural needs (eg, multilanguage and sensitive to cultural beliefs). Timing of Information. A participant stated that there are “stages of understanding,” not based specifically on the severity of the disease. In particular, they noted that the initial diagnosis, irrespective of CKD stage, was a “fragile” time to learn information. Participants reported that AJKD Vol XX | Iss XX | Month 2019
Original Investigation symptoms (eg, fatigue) at any stage made it difficult to “absorb” the information. However, they also noted that the asymptomatic nature of CKD may contribute to the lack of urgency to learn, “I didn’t take it seriously,” and suggested that traditional education methods based on the trajectory of the disease may not be the optimal way to deliver information. Amount of Information. The amount of information received from HCPs resulted in participants feeling “overwhelmed.” Those who received no information after the initial diagnosis reported that they “had not been given any direction,” “so how can I handle this myself,” and those who received excessive information felt scared and confused, “over my head.” Tangible Supports for the Health Journey
Identifying, navigating, and coordinating family, community, and health care supports for both patients and their caregivers were significant factors to self-manage CKD: “it takes a village.” Support Provided by Family and Community. Both patients and caregivers identified and appreciated support from family, peers, community, and social groups (eg, spiritual and friends). Family members helped them with very practical tasks, finding information and resources (eg, websites), and assisted with driving, cooking, and medication management. Reciprocal peer support from those with similar chronic health issues (eg, CKD and cardiac rehabilitation programs) provided a sense of social connectedness as they were “going through similar things” and helped minimize feeling “socially isolated.” Participants reported that community and social groups could “lift” spirits and provide a distraction from the emotional sequelae of the disease. For some, these supports were not readily available and it was suggested that they may be offered virtually (eg, online support groups and blogs). Support Provided by Professionals. Participants reported that both HCPs (eg, primary care physician, nephrologist, nurse, dietician, and pharmacist) and other disciplines of complementary and alternative medicine (eg, homeopath and traditional healer) helped them manage their CKD by providing resources and reassurance. However, they reported that they had to “find,” “search out,” and “advocate” for professional support. Participants stressed the need to establish and build relationships with providers, in which they could “trust” and communicate openly. They suggested that checklists or prompts could assist them in directing questions and communicating their preferences for care. Discussion Patients and caregivers’ illness experiences and life situations influenced their perspectives regarding self-managing their CKD. Participants discussed their needs for self-management support through 3 themes: AJKD Vol XX | Iss XX | Month 2019
empowerment through knowledge, activation through information sharing, and tangible supports for the health journey. Consistent with previous research,17 we found that CKD-specific information and psychosocial and practical support were recommended to manage health and deal with the impact of CKD on lifestyle and family. An Australian survey also found that patients desired more support around mental and physical health and being active participants in their care, with attention to signs and symptoms.18 A recent systematic review identified how patients adjusted to a CKD diagnosis and found 7 key themes similar to our results, including diverse beliefs about disease causation and progression and how to delay progression.19 CKD self-management may differ from other chronic conditions due to factors unique to CKD (ie, asymptomatic and multimorbidity), thus requiring distinct selfmanagement support. Schulman-Green et al20 identified 3 self-management processes important to patients with a chronic disease: focusing on illness needs, activating resources, and living with a chronic illness. These processes are relevant to patients with CKD; however, their ability or degree to which they engage in these processes may vary. First, for patients with CKD to initiate self-management and focus on illness needs, they need to have an awareness of the disease. Due to the asymptomatic nature of CKD, patients may go undiagnosed for years before receiving care. Participants emphasized that CKD awareness involves knowing the risk factors, CKD status, CKD knowledge, and consequences of the disease. Information sharing needed to be effective (ie, accessible, meaningful, credible, and adequate) and timely (ie, sensitive to their readiness to learn) to encourage selfmanagement. Traditional self-management interventions by HCPs may not be effective when patients or caregivers are not ready to receive information.21 Second, activating resources depended on participants’ illness needs, culture, and community context. Similar to other chronic diseases, CKD self-management support needs to emphasize the central role that patients and family members have in managing their own care in partnership with community and the health care system (ie, both traditional and nontraditional providers). Participants spoke about the difficulty identifying, navigating, and coordinating tangible resources. They wanted to have access to an integrated structure of resources and services that were both formal (eg, health care system) and informal (eg, spiritual community and peer support) to support them. Finally, living with a chronic illness is a selfmanagement process in which individuals learn to cope and integrate the illness into the context of their lives.20 For both patients and their caregivers, they wanted the patient to “live well,” not just “live with the disease.” They recognized that self-management integration is influenced by many unique individual factors, including one’s 7
Original Investigation psychological state (eg, denial and emotionally overwhelmed), clinical presentation (eg, asymptomatic), and the health care system (eg, access to resources). Participants indicated that the trajectory of the disease does not necessarily dictate how they process emotions or integrate CKD into daily life. Rather, the course undulates, with patients and their caregivers confronting numerous fluctuations over time. Challenges with negotiating a state of wellness or illness are constantly being addressed; thus, illness integration does not follow a linear timeline or the disease trajectory. The disease trajectory is not only shaped by the illness course, but by actions taken by all parties involved.22 Although existing CKD self-management strategies and interventions are available for patients and caregivers, there is room for improvement. The opportunity to involve patients as partners in their health, together with family, those who care for them, and the community, is feasible. Innovative approaches, such as electronic health (eHealth) tools that address these patient and caregiver desires to provide sufficient knowledge and actionable information and offer concrete integrated resources and services may better equip patients and their caregivers to manage the consequences of CKD. Our study has some limitations. We included patients with CKD with varied causes and severity of CKD from across Canada. We did not capture comorbid conditions that a patient may have, limiting our understanding of differential self-management strategies for those comanaging comorbid conditions. Our participants were primarily younger than 75 years and their self-management needs may differ from those of an older population. Finally, our patient participants were primarily white, educated, married, English speaking, and with good perceived health status, which may limit the transferability of findings. In conclusion, given the importance placed on selfmanaging CKD attention to the needs of patients and caregivers is essential to support their efforts. Our findings suggest that there are opportunities to enhance selfmanagement support by addressing the suggested areas of knowledge, improving information sharing, and providing tangible supports. These results can be used to inform the codevelopment of future innovations for selfmanagement support tailored to patient and caregiver needs.
Lori Harwood, PhD, Chantel A. Large, MSW, Claire L. Large, MSW, Blair Waldvogel, MBA, Dwight Sparkes, BSc, Maria Delgado, Allison Tong, PhD, Allan Grill, MD, Marta Novak, PhD, MD, Matthew T. James, PhD, MD, K. Scott Brimble, MSc, MD, Susan Samuel, MSc, MD, and Brenda R. Hemmelgarn, PhD, MD, FRCPC. Authors’ Affiliations: Departments of Medicine (MDo, HT-T, JF, JM, ME, MTJ, BRH) and Community Health Sciences (MDo, PR, ME, BRH), University of Calgary; Interdisciplinary Chronic Disease Collaboration, Calgary, Alberta (MDo, PR, ME, MTJ, BRH); Daphne Cockwell School of Nursing, Ryerson University (HB); Department of Medicine, University of Toronto (SSt); Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Toronto, Ontario (SSt); Can-SOLVE CKD Patient Partner, Vancouver, British Columbia (GH, CAL, CLL, BW, DS, MDe); London Health Sciences Centre, London, Ontario, Canada (LH); Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia (AT); Department of Family & Community Medicine (AG) and Centre for Mental Health, University Health Network and Department of Psychiatry (MN), University of Toronto, Toronto; Department of Medicine, McMaster University, Hamilton, Ontario (KSB); and Department of Pediatrics, University of Calgary, Calgary, Alberta, Canada (SSa). Address for Correspondence: Brenda R Hemmelgarn, MD, PhD, FRCPC, Cumming School of Medicine, University of Calgary, TRW Building, 3rd Floor, 3280 Hospital Drive NW, Calgary, AB Canada T2N 4Z6. E-mail: [email protected] Authors’ Contributions: Research idea and study design: all authors; data acquisition: MDo, JF, HT; data analysis/ interpretation: MDo, JF, HT, JM, GH; supervision or mentorship: BRH, HB, SSt, PR. Each author contributed important intellectual content during manuscript drafting and revisions and accepts accountability for the overall work by ensuring that questions to the accuracy or integrity of any portion of the work are appropriately investigated and resolved. Support: Ms Donald is supported by Alberta Strategy for PatientOriented Research (SPOR) Graduate Studentship in PatientOriented Research. Dr Hemmelgarn is supported by the Roy and Vi Baay Chair in Kidney Research. This work is a project of the Can-SOLVE CKD Network, supported by the Canadian Institutes of Health Research under Canada’s SPOR grant 20R26070. The funding organizations had no role in the design and conduct of the study; data collection, analysis, and interpretation; or preparation, review, or approval of the manuscript. Financial Disclosure: The authors declare that they have no relevant financial interests. Acknowledgements: We thank the patients and caregivers from across Canada who participated in the study and the individuals who assisted in various study-related activities: Michelle Smekal, Sarah Gil, Christine Marques, Susan Hall, and Michele Ivanouski. Peer Review: Received November 1, 2018. Evaluated by 2 external peer reviewers, with direct editorial input from an Associate Editor and the Editor-in-Chief. Accepted in revised form February 1, 2019.
Supplementary Material Supplementary File (PDF) Item S1: Interview guide.
Article Information Authors’ Full Names and Academic Degrees: Maoliosa Donald, MSc, Heather Beanlands, PhD, Sharon Straus, MSc, MD, Paul Ronksley, PhD, Helen Tam-Tham, PhD, Juli Finlay, PhD, Jennifer MacKay, BN, Meghan Elliott, MSc, MD, Gwen Herrington, MN,
8
References 1. 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. 2. Chen SH, Tsai YF, Sun CY, Wu IW, Lee CC, Wu MS. The impact of self-management support on the progression of chronic kidney disease–a prospective randomized controlled trial. Nephrol Dial Transplant. 2011;26(11):35603566.
AJKD Vol XX | Iss XX | Month 2019
Original Investigation 3. Novak M, Costantini L, Schneider S, Beanlands H. Approaches to self-management in chronic illness. Semin Dial. 2013;26(2): 188-194. 4. O’Hare AM. Patient-centered care in renal medicine: five strategies to meet the challenge. Am J Kidney Dis. 2018;71(5): 732-736. 5. 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. 6. National Kidney Foundation. National research priorities for kidney disease identified by patients. 2018; UK. https://www. kidney.org/news/national-research-priorities-kidney-diseaseidentified-patients. Accessed August 2, 2018. 7. Hemmelgarn BR, Pannu N, Ahmed SB, et al. Determining the research priorities for patients with chronic kidney disease not on dialysis. Nephrol Dial Transplant. 2017;32(5): 847-854. 8. Tong A, Crowe S, Chando S, et al. Research priorities in CKD: report of a national workshop conducted in Australia. Am J Kidney Dis. 2015;66(2):212-222. 9. Bonner A, Havas K, Douglas C, Thepha T, Bennett P, Clark R. Self-management programmes in stages 1-4 chronic kidney disease: a literature review. J Ren Care. 2014;40(3): 194-204. 10. 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. 11. Donald M, Kahlon BK, Beanlands H, et al. Self-management interventions for adults with chronic kidney disease: a scoping review. BMJ Open. 2018;8(3):e019814.
AJKD Vol XX | Iss XX | Month 2019
12. Can-SOLVE CKD Network. Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease. https:// cansolveckd.ca/. Accessed July 23, 2018. 13. KDIGO clinical practice guideline for the evaluation and management of chronic kidney disease. Kidney Int Suppl. 2012;3:1-150. 14. Grey M, Schulman-Green D, Knafl K, Reynolds NR. A revised self- and family management framework. Nurs Outlook. 2015;63(2):162-170. 15. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-1288. 16. Tong A, Sainsbury P, Craig J. Consolidated Criteria for Reporting Qualitative Research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-357. 17. Tong A, Sainsbury P, Chadban S, et al. Patients’ experiences and perspectives of living with CKD. Am J Kidney Dis. 2009;53(4):689-700. 18. Havas K, Douglas C, Bonner A. Person-centered care in chronic kidney disease: a cross-sectional study of patients’ desires for self-management support. BMC Nephrol. 2017;18(1):17. 19. Teasdale EJ, Leydon G, Fraser S, Roderick P, Taal MW, Tonkin-Crine S. Patients’ experiences after CKD diagnosis: a meta-ethnographic study and systematic review. Am J Kidney Dis. 2017;70(5):656-665. 20. Schulman-Green D, Jaser S, Martin F, et al. Processes of selfmanagement in chronic illness. J Nurs Scholarsh. 2012;44(2): 136-144. 21. Narva AS, Norton JM, Boulware LE. Educating patients about CKD: the path to self-management and patient-centered care. Clin J Am Soc Nephrol. 2016;11(4):694-703. 22. Corbin JM. The Corbin and Strauss chronic illness trajectory model: an update. Sch Inq Nurs Pract. 1998;12(1):33-41.
9
Identifying Needs for Self-management Interventions for Adults With CKD and Their Caregivers: A Qualitative Study Maoliosa Donald, Heather Beanlands, Sharon Straus, Paul Ronksley, Helen Tam-Tham, Juli Finlay, Jennifer MacKay, Meghan Elliott, Gwen Herrington, Lori Harwood, Chantel A. Large, Claire L. Large, Blair Waldvogel, Dwight Sparkes, Maria Delgado, Allison Tong, Allan Grill, Marta Novak, Matthew T. James, K. Scott Brimble, Susan Samuel, and Brenda R. Hemmelgarn Rationale & Objective: Fostering the ability of patients to self-manage their chronic kidney disease (CKD), with support from caregivers and providers, may slow disease progression and improve health outcomes. However, little is known about such patients’ needs for selfmanagement interventions. We aimed to identify and describe the needs of adults with CKD and informal caregivers for CKD self-management support. Study Design: Descriptive qualitative study using semi-structured interviews and focus groups. Setting & Participants: 6 focus groups (37 participants) and 11 telephone interviews with adults with CKD (stages 1-5, not on renal replacement therapy) and informal caregivers from across Canada. Analytic Approach: Thematic analysis. Results: 3 major themes were identified: (1) empowerment through knowledge (awareness
I
and understanding of CKD, diet challenges, medication and alternative treatments, attuning to the body, financial implications, mental and physical health consequences, travel and transportation restrictions, and maintaining work and education), (2) activation through information sharing (access, meaningful and relevant, timing, and amount), and (3) tangible supports for the health journey (family, community, and professionals). Limitations: Participants were primarily white, educated, married, and English speaking, which limits generalizability.
Correspondence to B.R. Hemmelgarn (brenda. [email protected]) Am J Kidney Dis. XX(XX): 1-9. Published online Month X, XXXX. doi: 10.1053/ j.ajkd.2019.02.006
© 2019 by the National Kidney Foundation, Inc.
Conclusions: There are opportunities to enhance CKD self-management support by addressing knowledge pertinent to living well with CKD and priority areas for sharing information and providing tangible support. Future efforts may consider the development of innovative CKD self-management support interventions based on the diverse patient and caregiver needs identified in this study.
ndividuals with chronic kidney disease (CKD) must balance medical management of their kidney disease and multiple morbid conditions with their day-to-day responsibilities.1 Self-management may delay CKD progression,2 improve quality of life, and positively influence health outcomes3; however, it can be challenging.4,5 Selfmanagement is a complex set of processes and tasks that involves developing knowledge, skills, and confidence to manage the disease; identifying and accessing resources and supports; and learning to cope with the condition, including in terms of its impact on an individual’s life and the emotional consequences of the illness.3 Three research priority activities involving patients, researchers, clinicians, and decision makers in the United States, Australia, and Canada identified the need for strategies to help patients self-manage their CKD as one of the top 10 research priorities.6-8 However, there is limited information regarding self-management interventions for patients with CKD, particularly those not receiving renal replacement therapy.9-11 Our recent scoping review identified substantial research gaps because only 20% of studies incorporated a theory or framework related to behavior change or were based on clinical practice guidelines, and <1% involved patients in the design of the AJKD Vol XX | Iss XX | Month 2019
Complete author and article information appears at end of article text.
intervention.11 This exploratory qualitative study is part of a larger multiphase mixed-methods study to codevelop, implement, and evaluate an intervention to enhance selfmanagement of CKD.12 Using a pragmatic approach, we aimed to describe needs of adults with CKD and their caregivers for CKD self-management support (ie, interventions, services, and resources). Methods Participants and Setting Individuals were eligible to participate if they were English speaking, 18 years or older, able to provide informed consent, and aware of their diagnosis of CKD (stages 1-5, not currently on dialysis, or prior kidney transplant recipient)13 regardless of cause or duration of CKD. Informal caregivers (eg, family members and friends) of individuals with CKD were also eligible. Both patients and caregivers were able to participate in the same focus group because both are highly involved in the management of kidney disease, although dyads of patients and caregivers were not a requirement. Participants from across Canada were recruited through various methods, including CKD and primary care clinics in Alberta and Ontario (through 1
Original Investigation newsletters and posters), the Kidney Foundation of Canada, and a national network, Canadians Seeking Solutions and Innovations to Overcome CKD (Can-SOLVE CKD) using social media (eg, Twitter, Facebook, and websites). Individuals were invited to participate in 1 of 6 focus groups held in nonclinical settings. A telephone interview was offered for participants unable to attend a face-to-face focus group. Participants were purposively selected using a sampling grid to provide maximum diversity of age, ethnic background, sex, CKD severity, urban/rural residence, and duration of CKD diagnosis. Ethics approval was obtained from the 3 institutions involved (University of Calgary, Alberta [REB #17-0908]; St. Michael’s Hospital, Ontario [REB #17-238]; and London Health Sciences Centre, Ontario [REB #109627]). Data Collection We used a semi-structured interview guide (Item S1) and invited participants to respond to questions about: (1) their experiences managing CKD, (2) what they considered important to support self-management, and (3) how they used self-management strategies provided by health care providers (HCPs) to manage their CKD. Previous work on patient perspectives regarding self-management1 and the Self- and Family Self-management Framework14 informed the interview guide. A facilitator (M.Do.) with experience in qualitative methods led the 90-minute focus groups and 60-minute telephone interviews, with informed consent obtained before the session. A note taker was present at all focus groups to take notes to supplement audio recordings. All sessions were digitally audiorecorded and transcribed verbatim. We conducted focus groups and telephone interviews until we reached data saturation (ie, the point at which little or no new information emerged). Data Analysis Transcripts were entered into NVivo11 (QSR International Pty Ltd, version 11, 2016) to facilitate data management and analysis (eg, store, review, code, and search data). We used thematic analysis and systematically coded and identified themes inductively from the data.15 The focus of the analysis was to identify and describe the needs of patients and informal caregivers regarding self-management support. To ensure that the range and depth of the data were reflected in the analysis, transcripts were independently analyzed by 4 research team members experienced in qualitative research (M.Do., J.F., H.T., and J.M.). First, the research team members familiarized themselves with the data by reviewing the initial focus group and 2 telephone interviews and inductively generated initial codes. A preliminary coding scheme was then developed and applied to subsequent transcripts, revisiting and refining the coding scheme as necessary through regular team discussions. Next, research team members independently developed
2
preliminary themes. After team discussion, themes were refined and checked against coded extracts and the overall data set to identify relationships and patterns. Finally, the research team members along with 2 of our Can-SOLVE CKD patient partners (G.H. and D.S.), not included as study participants, collaboratively revised the themes until agreement. Notes were reviewed throughout the analysis process to inform context and insights from the focus groups and telephone interviews. We reported our study according to the Consolidated Criteria for Reporting Qualitative studies (COREQ) checklist.16 Results Participant Demographics Six focus groups (3 each in the provinces of Alberta and Ontario) involving 37 participants and 11 telephone interviews from participants across Canada were conducted, for a total of 48 participants (33 patients and 15 caregivers, with 9 patient-caregiver dyads). The number of focus group participants ranged from 2 to 9. We had an 85% attendance rate for the focus groups, with reasons for nonattendance most commonly due to illness. Our sample included a diverse range of demographic and clinical characteristics through planned recruitment; therefore, we did not need to specifically recruit or dismiss participants. The majority of participants were women (62%), younger than 75 years (79%), and white (67%), with a similar distribution of urban and rural locations (Table 1). Patients were equally represented across CKD stages 2 to 5, with the majority (70%) diagnosed in the past 10 years. Thematic Analysis We identified 3 main themes that reflected participant needs for CKD self-management support: empowerment through knowledge (awareness and understanding of CKD, diet challenges, medication and alternative treatments, attuning to the body, financial implications, mental and physical health consequences, travel and transportation restrictions, maintaining work, and education), activation through information sharing (access, meaningful and relevant, timing, and amount), and tangible supports for the health journey (family, community, and professionals). Overall, patient participants wanted to “live well with CKD,” and both patients and their caregivers wanted support to help them adjust to the “new normal” and not just “live with the illness.” Quotes throughout the text are presented as stated by participants without modification. Themes and illustrative participant quotes are provided in Box 1. Figure 1 provides a visualization of the 3 themes. To self-manage CKD, tangible supports and activation through information sharing are foundational to gaining information to live well with CKD.
AJKD Vol XX | Iss XX | Month 2019
Original Investigation Table 1. Participant Characteristics Patients Characteristics No. of participants 33 Female sex 20 (60%) Age <50 y 10 (30%) 50-64 y 8 (24%) 65-74 y 8 (24%) ≥75 y 7 (22%) Marital status Common law 2 (6%) Divorced 2 (6%) Married 23 (70%) Single 5 (15%) Widowed 1 (3%) Population of geographic location <500,000 (rural) 13 (39%) ≥500,000 (urban) 20 (61%) Level of education Primary (grade ≤ 12) 7 (21%) Secondary (college, university, 21 (64%) trade school) Postsecondary graduate 4 (12%) No response 1 (3%) Level of employment Full time 9 (27%) Part time 6 (18%) Other (home duties, unemployed, 18 (55%) student, retired) Ethnicity White 21 (64%) Other (eg, indigenous, Asian, 12 (36%) black, Hispanic) Self-reported Patient Clinical Characteristics Duration of CKD diagnosis ≤5 y 13 (40%) 6-10 y 10 (30%) ≥11 y 9 (27%) Unknown 1 (3%) Cause of CKD Diabetes and/or high blood pressure 12 (37%) GN (eg, IgA nephropathy, lupus) 4 (12%) Other (eg, sepsis, hereditary, 12 (36%) obstruction) Unknown 5 (15%) eGFR 9 (27%) 30-60 mL/min/1.73 m2 7 (21.5%) 15-29 mL/min/1.73 m2 7 (21.5%) <15 mL/min/1.73 m2 Unknown 10 (30%) Perceived health status Excellent 2 (6%) Very good 3 (9%) Good 16 (49%) Fair 9 (27%) Poor 3 (9%)
Caregivers 15 10 (67%) 0 8 4 3
(0%) (53%) (27%) (20%)
2 (13%) 1 (7%) 12 (80%) 0 (0%) 0 (0%) 11 (73%) 4 (26%) 3 (20%) 9 (60%) 2 (13%) 1 (7%) 5 (33%) 1 (7%) 9 (60%) 11 (73%) 4 (27%)
Note: n = 48. Abbreviations: CKD, chronic kidney disease; eGFR, estimated glomerular filtration rate; GN, glomerulonephritis; IgA, immunoglobulin A.
AJKD Vol XX | Iss XX | Month 2019
Themes Empowerment Through Knowledge Participants had questions they wanted answered by their HCPs and reported that they needed support in the following areas to feel confident and capable to “look after myself.” Awareness and Understanding of CKD. Participants believed that awareness of CKD was the “first step” for patients to live well with CKD. They reported that lack of awareness prevented them from engaging in selfmanagement activities. This was relevant to some patients who were doubtful or in denial that they had CKD: “am I a CKD patient or not?” and “I don’t feel like I have the disease.” Patients with an absence of symptoms stated that they continued to “live life” in a way that resulted in negative health outcomes. Some patients reported “regret” that they did not actively engage in managing the disease earlier. Even under the care of a physician, both patients and their caregivers thought that support and education received may not be relevant to their kidney diagnosis (eg, hereditary causes), stating there are “several types of kidney disease” and some of us “don’t exist” to HCPs. For participants to “buy in” to having kidney disease, they expressed the need for personalized information for a variety of topics. These included the causes of CKD, risk factors for CKD and how to prevent them, CKD status and how to slow progression, and available treatments (pharmacologic and nonpharmacologic) at any stage of the disease, not just when they are in kidney failure. Diet Challenges. Diet was considered a “big factor” for living well with CKD. Participants reported that diet restrictions posed multiple challenges (eg, eating out, attending social gatherings, and understanding food labels) and required increased effort on the part of the patient and caregiver (eg, preparing separate meals, grocery shopping, and making affordable meals). Participants mentioned they “wished somebody told them sooner” about what they “can eat” more so than what they “can’t eat.” Those with CKD and diabetes stated that it was “tricky” to manage the “opposing” kidney and diabetic diets, with no resources to assist in learning how to balance both. To address these challenges, they suggested “tips and tricks” for a personalized diet such as a guidebook or other tools including grocery lists, cooking or food apps, or YouTube cooking videos. Medication and Alternative Treatments. Participants wanted to know about “typical” medications for managing CKD, including side effects and interactions between medications. Many patients reported being on treatment with numerous medications, resulting in a cascade of negative health consequences. Others reported being “fearful” of medication side effects and commented that it was “worse than the disease.” For some, this meant looking for other alternatives or “avenues” to help them deal with symptoms (eg, pain, fatigue, depression, and stress), including seeing a naturopath, massage therapist, 3
Original Investigation Box 1. Themes and Selected Illustrative Quotations Theme 1: Empowerment Through Knowledge Awareness of and understanding CKD • “It affected my life tremendously, especially when I was first diagnosed. Before that I didn’t have any idea nor inclination that I was sick.” (INT, Patient 49) • “I need to have questions addressed, I need to know why and what can I do.” (INT, Patient 13) • “A lot of people don’t think ‘I’m fine’. And even myself, I’m fine. I’m okay. But then somewhere down the line, they [wife] start having some problems and saying, ‘Oh, I wish I listened.’ Next thing you know, you’ve got a problem and you’re saying, ‘Why does this happen?’” (FG 6, Caregiver 6) Diet challenges • “You can tell somebody what they can’t eat, but then when you don’t provide them with alternatives, you kind of get stuck.” (INT, Patient 43) • “I did like a protein thing and I didn’t realize I was damaging (my kidneys) further. So, I dropped 20% (function) in a year. I wish somebody had told me. Don’t do that.” (FG 4, Patient 7) • “Diet becomes a frustration for me. I can’t have this, I can’t have that. I need clearance of everything that goes in my mouth!” (FG 4, Patient 2) Medication and alternative treatments • “Taking one pill could cause something else with another pill or could cause something in your kidneys or this pill isn’t good for your kidneys.” (FG 6, Patient 7) • “My osteopath has been able to help, I have a lot of swelling in my kidneys so he’s been able to help me manage that pain.” (INT, Patient 23) Attuning to the body • “I was put on a high dosage of steroids, so I was feeling a lot of side effects. I had very bad stomach aches, I was tired every day, and I just couldn’t get to work every day.” (INT, Patient 49) • “I find that I do get like numbness in my legs and stuff like that. Being tired all the time, that sort of thing.” (INT, Patient 17) Financial implications • “It’s all my [financial] responsibility as a husband.” (INT, Patient 33) • “The financial impact … after working full time and then not working anymore, it takes its toll.” (FG 3, Patient 5) Mental and physical health consequences • “I just had a team lunch and there is a big discussion around where we are going to eat because there are only certain things I can eat. So, you are always kind of singled out and a little bit of stigma around it.” (INT, Patient 17) • “She [doctor] gives me this booklet to read and I sat there and about 2 minutes into it, I couldn’t stop crying. I was thinking he [husband] was going to die, this was going to happen, that was going to happen.” (FG 3, Caregiver 5) • “The nephrologist tells me, you know, you got to exercise, I want you outside and exercising at least 3 times a week. Well with a bad knee that’s not possible.” (FG 5, Patient 5) Travel and transportation restrictions • “It’s like you are restricted. I can’t go away if I feel like going away. There’s the thought what if this happens, so the fear.” (FG 4, Patient 5) • “The fact that you have to get to doctors, get to the hospital, sometimes you can’t drive because of the drugs.” (INT, Patient 29) Maintaining work and school • “I never integrated it [CKD] into my life. It was just so difficult for me so I quit work hoping I can get a little more settled.” (FG 3, Patient 7) • “I have had this disease since birth it has been with me my entire life, the impact on my schooling … caused me to miss quite a lot of school.” (INT, Patient 43) Theme 2: Activation Through Information Sharing Access to information • “If there was a checklist and it has the questions … and you take the darn list with you and ask them [doctor].” (FG 6, Caregiver 7) • “The doctors don’t like you to have access to your information … . It would be easier if I had like some sort of patient portal that I can go in and get the information.” (INT, Patient#17) • “I think basically if a patient attends a kidney clinic or they go to the kidney doctor, I think if there is information there. If you can’t access it [clinic], mail is about the only way, I mean I do emails for instance, it’s hard because in my particular case too, I have macular degeneration.” (INT, Patient 48) (Continued)
4
AJKD Vol XX | Iss XX | Month 2019
Original Investigation Box 1 (Cont'd). Themes and Selected Illustrative Quotations Meaningful and relevant information • “Everyone deals with information differently and how you filter, news affects everybody differently.” (FG 4, Patient 2) • “Like a guide book because the one they gave me was very, very general and it doesn’t really [help], it helps to give me some information but could be more because most of the things I learned it on my own.” (INT, Patient 49) Timing of information • “Having access to information regardless of stage is vital, more than vital … you have to tailor because Google and all these apps are great and helpful, but I get really lost in the information, because it doesn’t apply to me.” (FG 4, Patient 2) • “If we are looking at developing a toolbox for people who are just diagnosed, there are stages of understanding, when I was first diagnosed I was completely overwhelmed and very sick.” (INT, Patient 23) Amount of information • “There is a wealth of information out there and you become so overwhelmed.” (FG 1, Caregiver 9) • “I’m not blaming anyone but I did not get any information that I felt would help me deal with the kidney disease.” (FG 1, Caregiver 6) Theme 3: Tangible Supports for the Health Journey Support provided by family and community • “When the patients talk to each other and shared some of those things (very good ideas on how to manage), they were extremely helpful.” (FG 5, Caregiver 4) • “You can share your challenges (with peers) and you can hear other people going through similar things and you don’t feel as isolated.” (FG 3, Patient 6) • “I shared my experience within the church community.” (INT, Patient 49) Support provided by professionals • “We’ve talked to a dietician lots of times but it’s just a matter of saying I’d like to see a dietician.” (FG 5, Patient 3) • “I mean not everybody has a plan but some people do and some people don’t, but having access to know what is available out there and getting help for things from a group of people or like a social worker that can answer some of those questions.” (INT, Patient 29) Abbreviations: CKD, chronic kidney disease; FG, focus group; INT, telephone interview.
traditional Chinese medicine practitioner, medicine healer, and osteopath. Some participants also stated that they partook in yoga, tai chi, aromatherapy, and meditation to help manage. Attuning to the Body. Patient participants reported a spectrum of symptom experiences, from being asymptomatic to experiencing disabling symptoms. They expressed that their disease severity did not necessarily correspond with symptoms but that knowing the possible symptoms at any stage of CKD would help them cope. Patients without symptoms expressed a desire to know the “signals” of CKD, such as the physical changes to their body. Those experiencing symptoms identified this as an indication that their kidneys were “not doing so great” or a possible result of the medications they were taking. For some, their symptoms motivated them to take or to continue an active role in managing their disease, for example, to “follow the rules.” Financial Implications. Participants expressed concern about financial implications related to lack of insurance coverage for medications, when they had to “fight hard to get a drug.” Others stated that they incurred costs associated with trying to maintain a healthy lifestyle, such as weight loss programs, purchasing groceries for their CKD diet, or attending health care appointments not covered under their health plan. Participants reported that these AJKD Vol XX | Iss XX | Month 2019
concerns are rarely addressed by HCPs, suggesting that resources should be available early in their diagnosis. Mental
and
Physical
Health
Consequences.
Participants stated that coping with the consequences of CKD, such as social isolation, disease stigma, and depression, were key areas to be addressed to live well with CKD. They reported that mental health was not “talked about” and suggested the development of tools to identify and assist with initiating conversations about mental health and well-being with their HCPs. Participants were told by HCPs that physical health was important and that they need to exercise and lose weight. Although participants reported that this advice was useful, they commented that providers did not provide a specific “exercise prescription” that was personalized to their physical needs (eg, osteoarthritis of the knees or struggling with exhaustion). Travel and Transportation Restrictions. Participants reported that they felt “restricted” due to travel insurance costs “not covered” and the possibility of their health deteriorating while away. For those who traveled to medical appointments or work, some reported that their health limited their ability to drive (eg, blindness due to diabetes) or medication side effects (eg, drowsiness). They relied on family and friends and reported feeling “guilty” for the perceived burden placed on these supports. For 5
Original Investigation
Work/ Education Finances
Symptoms
Mental/ Physical Health
Empowerment Through Knowledge
Medications & Alternative Treatments
Awareness / Understanding of CKD
Diet
Travel
Tangible (practical) supports
Activation through information sharing
Figure 1. Living well with chronic kidney disease (CKD),
some participants, the loss of their ability to drive, “it’s been taken away,” left them feeling disempowered. Participants wanted guidance regarding travel and transportation because they believed it was important to their self-esteem and lifestyle. Maintaining Work and Education. Many patient participants reported that work and/or education played an important part in their lives. They indicated that work was a source of financial livelihood, and they felt financially “responsible” for their family. Students with CKD stated that they struggled with having to miss classes due to symptoms and numerous medical appointments. Some patient participants commented that they wanted to keep their diagnosis confidential and not share with employers or teachers, “appear as if nothing is wrong,” while others wanted to share their diagnosis. However, they noted that they were dismissed, “you look fine.” Participants stated that they required information and resources to help them manage these 2 areas to maintain working and attending school. Activation Through Information Sharing
Participants stated that information sharing played a big factor in “taking action,” but it needed to be accessible, 6
relevant, meaningful, and timely and provided in the appropriate “amount” based on individual preferences. Access to Information. Participants stated that information should be available through a combination of delivery modes, such as face to face, telephone, paper, email, webinars, and online. They also spoke about the difficulty accessing information, “I had to research it (CKD information) on my own” or the lack of access to their “health record” (eg, laboratory reports). It was suggested that information be available in the community setting (eg, primary care physician’s office or at home). Meaningful and Relevant Information. Participants wanted “credible” information, tailored to their specific medical and lifestyle preferences. They indicated that they preferred information in an “easy language” with no “jargon,” and they stressed the importance of incorporating cultural needs (eg, multilanguage and sensitive to cultural beliefs). Timing of Information. A participant stated that there are “stages of understanding,” not based specifically on the severity of the disease. In particular, they noted that the initial diagnosis, irrespective of CKD stage, was a “fragile” time to learn information. Participants reported that AJKD Vol XX | Iss XX | Month 2019
Original Investigation symptoms (eg, fatigue) at any stage made it difficult to “absorb” the information. However, they also noted that the asymptomatic nature of CKD may contribute to the lack of urgency to learn, “I didn’t take it seriously,” and suggested that traditional education methods based on the trajectory of the disease may not be the optimal way to deliver information. Amount of Information. The amount of information received from HCPs resulted in participants feeling “overwhelmed.” Those who received no information after the initial diagnosis reported that they “had not been given any direction,” “so how can I handle this myself,” and those who received excessive information felt scared and confused, “over my head.” Tangible Supports for the Health Journey
Identifying, navigating, and coordinating family, community, and health care supports for both patients and their caregivers were significant factors to self-manage CKD: “it takes a village.” Support Provided by Family and Community. Both patients and caregivers identified and appreciated support from family, peers, community, and social groups (eg, spiritual and friends). Family members helped them with very practical tasks, finding information and resources (eg, websites), and assisted with driving, cooking, and medication management. Reciprocal peer support from those with similar chronic health issues (eg, CKD and cardiac rehabilitation programs) provided a sense of social connectedness as they were “going through similar things” and helped minimize feeling “socially isolated.” Participants reported that community and social groups could “lift” spirits and provide a distraction from the emotional sequelae of the disease. For some, these supports were not readily available and it was suggested that they may be offered virtually (eg, online support groups and blogs). Support Provided by Professionals. Participants reported that both HCPs (eg, primary care physician, nephrologist, nurse, dietician, and pharmacist) and other disciplines of complementary and alternative medicine (eg, homeopath and traditional healer) helped them manage their CKD by providing resources and reassurance. However, they reported that they had to “find,” “search out,” and “advocate” for professional support. Participants stressed the need to establish and build relationships with providers, in which they could “trust” and communicate openly. They suggested that checklists or prompts could assist them in directing questions and communicating their preferences for care. Discussion Patients and caregivers’ illness experiences and life situations influenced their perspectives regarding self-managing their CKD. Participants discussed their needs for self-management support through 3 themes: AJKD Vol XX | Iss XX | Month 2019
empowerment through knowledge, activation through information sharing, and tangible supports for the health journey. Consistent with previous research,17 we found that CKD-specific information and psychosocial and practical support were recommended to manage health and deal with the impact of CKD on lifestyle and family. An Australian survey also found that patients desired more support around mental and physical health and being active participants in their care, with attention to signs and symptoms.18 A recent systematic review identified how patients adjusted to a CKD diagnosis and found 7 key themes similar to our results, including diverse beliefs about disease causation and progression and how to delay progression.19 CKD self-management may differ from other chronic conditions due to factors unique to CKD (ie, asymptomatic and multimorbidity), thus requiring distinct selfmanagement support. Schulman-Green et al20 identified 3 self-management processes important to patients with a chronic disease: focusing on illness needs, activating resources, and living with a chronic illness. These processes are relevant to patients with CKD; however, their ability or degree to which they engage in these processes may vary. First, for patients with CKD to initiate self-management and focus on illness needs, they need to have an awareness of the disease. Due to the asymptomatic nature of CKD, patients may go undiagnosed for years before receiving care. Participants emphasized that CKD awareness involves knowing the risk factors, CKD status, CKD knowledge, and consequences of the disease. Information sharing needed to be effective (ie, accessible, meaningful, credible, and adequate) and timely (ie, sensitive to their readiness to learn) to encourage selfmanagement. Traditional self-management interventions by HCPs may not be effective when patients or caregivers are not ready to receive information.21 Second, activating resources depended on participants’ illness needs, culture, and community context. Similar to other chronic diseases, CKD self-management support needs to emphasize the central role that patients and family members have in managing their own care in partnership with community and the health care system (ie, both traditional and nontraditional providers). Participants spoke about the difficulty identifying, navigating, and coordinating tangible resources. They wanted to have access to an integrated structure of resources and services that were both formal (eg, health care system) and informal (eg, spiritual community and peer support) to support them. Finally, living with a chronic illness is a selfmanagement process in which individuals learn to cope and integrate the illness into the context of their lives.20 For both patients and their caregivers, they wanted the patient to “live well,” not just “live with the disease.” They recognized that self-management integration is influenced by many unique individual factors, including one’s 7
Original Investigation psychological state (eg, denial and emotionally overwhelmed), clinical presentation (eg, asymptomatic), and the health care system (eg, access to resources). Participants indicated that the trajectory of the disease does not necessarily dictate how they process emotions or integrate CKD into daily life. Rather, the course undulates, with patients and their caregivers confronting numerous fluctuations over time. Challenges with negotiating a state of wellness or illness are constantly being addressed; thus, illness integration does not follow a linear timeline or the disease trajectory. The disease trajectory is not only shaped by the illness course, but by actions taken by all parties involved.22 Although existing CKD self-management strategies and interventions are available for patients and caregivers, there is room for improvement. The opportunity to involve patients as partners in their health, together with family, those who care for them, and the community, is feasible. Innovative approaches, such as electronic health (eHealth) tools that address these patient and caregiver desires to provide sufficient knowledge and actionable information and offer concrete integrated resources and services may better equip patients and their caregivers to manage the consequences of CKD. Our study has some limitations. We included patients with CKD with varied causes and severity of CKD from across Canada. We did not capture comorbid conditions that a patient may have, limiting our understanding of differential self-management strategies for those comanaging comorbid conditions. Our participants were primarily younger than 75 years and their self-management needs may differ from those of an older population. Finally, our patient participants were primarily white, educated, married, English speaking, and with good perceived health status, which may limit the transferability of findings. In conclusion, given the importance placed on selfmanaging CKD attention to the needs of patients and caregivers is essential to support their efforts. Our findings suggest that there are opportunities to enhance selfmanagement support by addressing the suggested areas of knowledge, improving information sharing, and providing tangible supports. These results can be used to inform the codevelopment of future innovations for selfmanagement support tailored to patient and caregiver needs.
Lori Harwood, PhD, Chantel A. Large, MSW, Claire L. Large, MSW, Blair Waldvogel, MBA, Dwight Sparkes, BSc, Maria Delgado, Allison Tong, PhD, Allan Grill, MD, Marta Novak, PhD, MD, Matthew T. James, PhD, MD, K. Scott Brimble, MSc, MD, Susan Samuel, MSc, MD, and Brenda R. Hemmelgarn, PhD, MD, FRCPC. Authors’ Affiliations: Departments of Medicine (MDo, HT-T, JF, JM, ME, MTJ, BRH) and Community Health Sciences (MDo, PR, ME, BRH), University of Calgary; Interdisciplinary Chronic Disease Collaboration, Calgary, Alberta (MDo, PR, ME, MTJ, BRH); Daphne Cockwell School of Nursing, Ryerson University (HB); Department of Medicine, University of Toronto (SSt); Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Toronto, Ontario (SSt); Can-SOLVE CKD Patient Partner, Vancouver, British Columbia (GH, CAL, CLL, BW, DS, MDe); London Health Sciences Centre, London, Ontario, Canada (LH); Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia (AT); Department of Family & Community Medicine (AG) and Centre for Mental Health, University Health Network and Department of Psychiatry (MN), University of Toronto, Toronto; Department of Medicine, McMaster University, Hamilton, Ontario (KSB); and Department of Pediatrics, University of Calgary, Calgary, Alberta, Canada (SSa). Address for Correspondence: Brenda R Hemmelgarn, MD, PhD, FRCPC, Cumming School of Medicine, University of Calgary, TRW Building, 3rd Floor, 3280 Hospital Drive NW, Calgary, AB Canada T2N 4Z6. E-mail: [email protected] Authors’ Contributions: Research idea and study design: all authors; data acquisition: MDo, JF, HT; data analysis/ interpretation: MDo, JF, HT, JM, GH; supervision or mentorship: BRH, HB, SSt, PR. Each author contributed important intellectual content during manuscript drafting and revisions and accepts accountability for the overall work by ensuring that questions to the accuracy or integrity of any portion of the work are appropriately investigated and resolved. Support: Ms Donald is supported by Alberta Strategy for PatientOriented Research (SPOR) Graduate Studentship in PatientOriented Research. Dr Hemmelgarn is supported by the Roy and Vi Baay Chair in Kidney Research. This work is a project of the Can-SOLVE CKD Network, supported by the Canadian Institutes of Health Research under Canada’s SPOR grant 20R26070. The funding organizations had no role in the design and conduct of the study; data collection, analysis, and interpretation; or preparation, review, or approval of the manuscript. Financial Disclosure: The authors declare that they have no relevant financial interests. Acknowledgements: We thank the patients and caregivers from across Canada who participated in the study and the individuals who assisted in various study-related activities: Michelle Smekal, Sarah Gil, Christine Marques, Susan Hall, and Michele Ivanouski. Peer Review: Received November 1, 2018. Evaluated by 2 external peer reviewers, with direct editorial input from an Associate Editor and the Editor-in-Chief. Accepted in revised form February 1, 2019.
Supplementary Material Supplementary File (PDF) Item S1: Interview guide.
Article Information Authors’ Full Names and Academic Degrees: Maoliosa Donald, MSc, Heather Beanlands, PhD, Sharon Straus, MSc, MD, Paul Ronksley, PhD, Helen Tam-Tham, PhD, Juli Finlay, PhD, Jennifer MacKay, BN, Meghan Elliott, MSc, MD, Gwen Herrington, MN,
8
References 1. 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. 2. Chen SH, Tsai YF, Sun CY, Wu IW, Lee CC, Wu MS. The impact of self-management support on the progression of chronic kidney disease–a prospective randomized controlled trial. Nephrol Dial Transplant. 2011;26(11):35603566.
AJKD Vol XX | Iss XX | Month 2019
Original Investigation 3. Novak M, Costantini L, Schneider S, Beanlands H. Approaches to self-management in chronic illness. Semin Dial. 2013;26(2): 188-194. 4. O’Hare AM. Patient-centered care in renal medicine: five strategies to meet the challenge. Am J Kidney Dis. 2018;71(5): 732-736. 5. 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. 6. National Kidney Foundation. National research priorities for kidney disease identified by patients. 2018; UK. https://www. kidney.org/news/national-research-priorities-kidney-diseaseidentified-patients. Accessed August 2, 2018. 7. Hemmelgarn BR, Pannu N, Ahmed SB, et al. Determining the research priorities for patients with chronic kidney disease not on dialysis. Nephrol Dial Transplant. 2017;32(5): 847-854. 8. Tong A, Crowe S, Chando S, et al. Research priorities in CKD: report of a national workshop conducted in Australia. Am J Kidney Dis. 2015;66(2):212-222. 9. Bonner A, Havas K, Douglas C, Thepha T, Bennett P, Clark R. Self-management programmes in stages 1-4 chronic kidney disease: a literature review. J Ren Care. 2014;40(3): 194-204. 10. 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. 11. Donald M, Kahlon BK, Beanlands H, et al. Self-management interventions for adults with chronic kidney disease: a scoping review. BMJ Open. 2018;8(3):e019814.
AJKD Vol XX | Iss XX | Month 2019
12. Can-SOLVE CKD Network. Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease. https:// cansolveckd.ca/. Accessed July 23, 2018. 13. KDIGO clinical practice guideline for the evaluation and management of chronic kidney disease. Kidney Int Suppl. 2012;3:1-150. 14. Grey M, Schulman-Green D, Knafl K, Reynolds NR. A revised self- and family management framework. Nurs Outlook. 2015;63(2):162-170. 15. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-1288. 16. Tong A, Sainsbury P, Craig J. Consolidated Criteria for Reporting Qualitative Research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-357. 17. Tong A, Sainsbury P, Chadban S, et al. Patients’ experiences and perspectives of living with CKD. Am J Kidney Dis. 2009;53(4):689-700. 18. Havas K, Douglas C, Bonner A. Person-centered care in chronic kidney disease: a cross-sectional study of patients’ desires for self-management support. BMC Nephrol. 2017;18(1):17. 19. Teasdale EJ, Leydon G, Fraser S, Roderick P, Taal MW, Tonkin-Crine S. Patients’ experiences after CKD diagnosis: a meta-ethnographic study and systematic review. Am J Kidney Dis. 2017;70(5):656-665. 20. Schulman-Green D, Jaser S, Martin F, et al. Processes of selfmanagement in chronic illness. J Nurs Scholarsh. 2012;44(2): 136-144. 21. Narva AS, Norton JM, Boulware LE. Educating patients about CKD: the path to self-management and patient-centered care. Clin J Am Soc Nephrol. 2016;11(4):694-703. 22. Corbin JM. The Corbin and Strauss chronic illness trajectory model: an update. Sch Inq Nurs Pract. 1998;12(1):33-41.
9