Abstract Care coordination has been shown to have a positive effect on the management of chronic disease. Specific to the management of leukemia, coordination may occur between primary care physician, medical and radiation oncologists, surgeons, cardiologists, and genetics specialists. Experiencing gaps in communication and care coordination, many health consumers seek instrumental support in their social circles, including online forums and networks. The goal of this theory-guided study was to provide an in-depth assessment of how individuals use online forums to deliberate about their goals and plans for leukemia care coordination. Guided by the planning theory of communication, the data were collected from the American Cancer Society Cancer Survivors Network and included 125 original posts and 1,248 responses. Thematic analysis and axial coding were applied to analyze the data. Goal-related themes included overcoming the diffusion of care coordination and achieving health management cohesion. Planning themes included social health management, communication self-efficacy, and role deliberation. Online patient forums provide an interactive platform for patients and caregivers to engage in active conversations, which in turn can serve as identifiers of care coordination needs. Communication with those who share similar experiences allows cancer patients and survivors to accumulate functional health literacy, gain communication self-efficacy, and articulate a care coordination role acceptable to them. Implications Practice: Online patient forums are viable platforms for supporting cancer patients and caregivers with information, providing support for deliberation of medical information and decisions, and developing self-management self-efficacy skills. Policy: Care coordination policies should consider sustainable interventions to support patient and caregiver health-management skill development outside of clinical interaction time. Research: Future research should assess the feasibility and implementation strategies for using online patient forums as data sources of patient-reported outcomes related to care coordination needs and platforms for the delivery of comprehensive patient-centered care. BACKGROUND Care coordination is a broad term that encompasses psychosocial, systems, and communication domains of healthcare provision. As an umbrella term, care coordination sometimes includes other terms like continuity of care and integrated care . Care coordination has been defined to include the anticipation of patient needs for pain and symptom management, psychosocial needs, and functional status . Coordination also attends to the establishment of shared accountability and integration of communities and healthcare systems to improve the quality of care and reduce health disparities  as well as the quality of care transitions and communication across care settings . Stressing the importance of the latter component, the National Quality Forum has identified effective communication as the core foundation of person- and family-centered care . The extent to which patients and families are prepared to navigate, coordinate, and manage their care appropriately and effectively has been identified as crucial to quality of care coordination . However, cancer diagnosis and associated care are new experiences for many patients, and there is frequently no experiential disease-related knowledge that can be shared among family members or other caregivers. Therefore, the current qualitative study was undertaken to identify how patients and caregivers formulate and deliberate about goals and plans for care coordination. Specifically, the authors looked at the communication between patients and caregivers related to leukemia care coordination. Communication and care coordination Care coordination has been shown to lead to positive outcomes in the management of chronic diseases . Specific to the management of leukemia, coordination may occur between medication and radiation oncologists, surgeons, cardiologists, and genetics specialists. For survivors, coordination may occur between primary care physicians, oncologists, rehabilitation specialists, and psychologists [8, 9]. Cancer treatment and follow-up care can be a complex and overwhelming experience, which calls for assistance in access and navigation. The challenges that cancer patients and survivors may face in the absence of effective communication for care coordination include the following: difficulty finding essential information and services, lack of preparation for health self-management, and inadequate support for survivorship issues . Looking to gain this knowledge and make sense of the drastic changes in their lives and health, patients and their caregivers may turn to social media sources . Some of these sources, like online forums, serve as communities of practice where health consumers can connect with those with similar diagnoses and experiences, exchange knowledge , and engage in conversations about their cancer care (self)-management . Active engagement with disease-specific information is curvilinear . Those in remission or undergoing treatment are more likely to be actively participating in information seeking and exchange on social media. However, engagement with preventive cancer information among those with identified risks is lower. Similarly, patients with advanced stages of the disease are likely to avoid cancer-related information [12, 13]. Overall, conversations among patients in online communities and forums have been linked to positive changes in functional condition-specific literacy  and can also provide information about perceived gaps and unmet needs related to the provision of healthcare [14, 15]. Care coordination needs vary from patient to patient. Situational differences can be due to the presence of strong family [16, 17] or social support , the level of health literacy and numeracy [19, 20], previous experience with a disease [9, 21], patients’ physical and psychological state [22, 23], and orientation toward health information [12, 24, 25]. Self-assessment and self-identification of these needs are also expected to be different among patients. Given limited resources and short face-to-face time clinicians spend with patients , an individualized approach to the fulfillment for patient needs could lead to superior care coordination outcomes  as long as patients can effectively articulate and express their needs and preferences [1, 28]. Communication between patients and providers is frequently further complicated by the clinicians’ use of medical jargon and terminology patients and caregivers do not understand . Although health communication training interventions for clinicians can lead to improved interactions , the development of patient communication skills is equally important. Patients are becoming increasingly involved in directing their own medical care , but for those with chronic diseases, it creates an additional burden for them . In addition to coping with a cancer diagnosis physiologically and adjusting to possible changes in social functioning and interactions, patients and caregivers are exposed to complicated and often upsetting information about treatment procedures [32, 33]. Patients’ ability for effective communication in the clinical context has been linked to their communication self-efficacy [34, 35]. Guided communication skills training for patients initiated by health practices has been shown to be effective . However, individuals who manage a chronic disease also need time and space to practice their questions and deliberate their decisions [37, 38]. Social media can provide deliberation space through conversations with peer patients or caregivers. Online forums provide a platform that can be used as an efficient and sustainable resource for patients to research pressing questions, communicate with one another, learn to assume more responsibility and autonomy, and formulate specific goals for the their health care . Planning theory of communication In communicating with others, individuals pursue purposive goals that they achieve using pre-existing cognitive plans. Conceptually, this connection between communication and actions has been developed within the framework of the planning theory of communication. According to the planning theory of communication, whenever people engage in communication, they use language as a tool to achieve goals such as problem solving, relating, informing, persuading, or supporting others . Their communication behaviors are guided by mental representations of desired end “goals,” and they devise “plans” to achieve those goals. The theory proposes that goals motivate activities and behaviors, and plans guide those actions. As plans are continuously developed, they are stored in long-term memory and can be used to achieve recurring goals. However, new life situations may require the development of new plans, which can be achieved through communication with peers and those who share a similar experience. The theory provides a conceptual explanation for the situation when individual goals are interrupted by an interfering illness. Specifically, when presented with new goals that have not been set previously, people may be forced to develop additional plans to achieve these new goals. The process of planning is not instantaneous, and initially patients and their caregivers may perceive a diminished ability to talk about certain issues related to a new diagnosis and treatment. In assessing the need to engage in communication, individuals formulate new communication and interaction goals and start developing plans to achieve them. The responsibility for disease and care management is shared between patients, caregivers, and their providers . While patients rely on healthcare providers for the delivery of care, effective care coordination is dependent on the active participation of patients and caregivers in decision making; functional knowledge acquisition; and follow-through on prescribed treatments, medication regimen, and self-care activities [42, 43]. However, the ownership of these elements of care coordination by patients and caregivers is situational and depends on their internalization of the goals for disease management, as well as perceived skills and efficacy of health self-management . Informed by the theoretical framework of the planned theory of communication, this study sought to examine how patients and caregivers used an online forum to formulate their goals and plans in the context of leukemia care. The following research question guided the study: How do cancer patients use online forums to deliberate about goals and plans for leukemia care coordination? METHODS Source of data Guided by an IRB-approved protocol and the planning theory of communication, the data were collected from the American Cancer Society Cancer Survivors Network (CSN). To post, an individual needs to register with the CSN. However, discussion boards maintained by the CSN are a public forum open to anyone, including non-CSN members. The boards are organized into 26 topics by the type of cancer. The subset of posts used for this study included 125 original posts and 1,248 responses associated with them from 338 individual users of the Leukemia board. The high post-to-comment rate is customary for online forum exchanges  and is representative of active and passive information behaviors observed in online health conversations [13, 45]. The posts were selected based on the day of last activity, and posts with activity between October 2014 and September 2016 were included. Similar to other online health communication studies, this data selection method allowed us to collect the posts that may have been initiated several years ago but still remain salient and attract comments from new forum participants . Data analysis After the data were collected from the ACS forum, all posts and comments were read through two to three times. The data were analyzed based on the methodological guidelines set forth by Charmaz  and Creswell , and adapted for use with online forum discussions. To remain open to all possible conceptual ideas present in the discourse during data analysis, grounded theory was initially used . As methodologically prescribed , the data analysis included data gathering, interpretation to reveal essential themes and reduce the data, theme analysis to determine conceptual interrelations, and report writing. Online forum conversations cover a broad array of topics, including functional disease knowledge exchange, sharing of personal health status information and updates, and conversations about forthcoming and past care provision and coordination. While considering all conversation topics, the authors analyzed posts through the lens of the latter, care coordination topic. Qualitative thematic analysis seeks to provide deeper understanding and insightful descriptions of individual health experiences but does not aim to report statistical relationships among variables or the frequency of behaviors. Therefore, individual posts and comments were not counted for the presence of a particular goal or plan theme. Emerging themes were discussed among the research team members who included an oncologist, a cancer communication scholar, and two leukemia biomedical scientists involved in patient education and engagement activities. To stay true to the original posts and comments, all quotes include original spelling and punctuation. At the stage of the initial coding, emerging themes were observed and labeled based on the unit of analysis, which was any meaningful thought up to a paragraph in length that related to the provision of care for a leukemia patient . The first author, Y.S., coded the data and discussed emerging findings with other authors, K.H. and L.D. Memos were written to summarize the posts and responses, interpret the meaning behind the data and identify gaps and inconsistencies within the initial coding. Subsequently, focused axial coding was used to relate codes to each other and identify overarching themes . At this stage, the pre-identified theoretical framework, the planning theory of communication, was used to define and interpret interactional strategies related to healthcare provision. It became apparent that those engaging in online conversations were using communication as a tool to express their goals and needs related to leukemia care coordination. Final analysis of the emerging themes was guided by the planning theory of communication to identify and assess conceptual interrelations between goal- and planning-related themes. RESULTS The main goal of this study was to examine how communication on a leukemia-focused online forum afforded deliberation about goals and plans for care coordination. Study findings present an in-depth thematic analysis of the deliberation and planning strategies used by health consumers to make sense, take ownership, and navigate leukemia care. Interpreting from the lens of the planning theory of communication , the authors examined how online forum participants stated the end goals that they want to attain and deliberated about planning strategies to achieve those goals. Because of this theoretical connection, the emerging themes were organized under two separate categories of goal- and planning-related themes. Emerging goal-related themes were the diffusion of care coordination and achieving cohesive care management. Planning themes included social health management, communication self-efficacy, and role deliberation. The analysis showed that goals and planning strategies (a) do not have a one-to-one relationship and (b) an inventory of planning strategies is developed to achieve the overarching goal of optimal health outcomes, as well as more specific care coordination goals. See Table 1 for the summary of goal- and planning-related themes, sub-themes, and operational categories. Table 1 Summary of goal- and planning-related themes, sub-themes, and operational categories Goals Diffusion of responsibility for care coordination Lack of expertise Insufficient explanation of treatment plan Disconnected referral recommendations Unguided search for second opinion Cohesive care Transparent actions Comprehensive symptom evaluation and management Sufficient information support Empathic communication Planning strategies Social health management Peer experiences and confirmation Tailored, on-demand information Knowledge sharing Information and knowledge translation Functional literacy Communication self-efficacy Ability to discuss disease-specific facts and terminology Development of individual communication plans Uncertainty acceptance Time and place for communication skill practice Role deliberation Active, autonomous Collaborative, shared Passive, provider-dependent Goals Diffusion of responsibility for care coordination Lack of expertise Insufficient explanation of treatment plan Disconnected referral recommendations Unguided search for second opinion Cohesive care Transparent actions Comprehensive symptom evaluation and management Sufficient information support Empathic communication Planning strategies Social health management Peer experiences and confirmation Tailored, on-demand information Knowledge sharing Information and knowledge translation Functional literacy Communication self-efficacy Ability to discuss disease-specific facts and terminology Development of individual communication plans Uncertainty acceptance Time and place for communication skill practice Role deliberation Active, autonomous Collaborative, shared Passive, provider-dependent View Large Table 1 Summary of goal- and planning-related themes, sub-themes, and operational categories Goals Diffusion of responsibility for care coordination Lack of expertise Insufficient explanation of treatment plan Disconnected referral recommendations Unguided search for second opinion Cohesive care Transparent actions Comprehensive symptom evaluation and management Sufficient information support Empathic communication Planning strategies Social health management Peer experiences and confirmation Tailored, on-demand information Knowledge sharing Information and knowledge translation Functional literacy Communication self-efficacy Ability to discuss disease-specific facts and terminology Development of individual communication plans Uncertainty acceptance Time and place for communication skill practice Role deliberation Active, autonomous Collaborative, shared Passive, provider-dependent Goals Diffusion of responsibility for care coordination Lack of expertise Insufficient explanation of treatment plan Disconnected referral recommendations Unguided search for second opinion Cohesive care Transparent actions Comprehensive symptom evaluation and management Sufficient information support Empathic communication Planning strategies Social health management Peer experiences and confirmation Tailored, on-demand information Knowledge sharing Information and knowledge translation Functional literacy Communication self-efficacy Ability to discuss disease-specific facts and terminology Development of individual communication plans Uncertainty acceptance Time and place for communication skill practice Role deliberation Active, autonomous Collaborative, shared Passive, provider-dependent View Large Goals for care coordination Overcoming the diffusion of responsibility for care coordination Participant comments addressed the need to “repair” the existing care coordination gaps to overcome the diffusion of responsibility for coordination of their care, which was presented as an essential goal in the achievement of desired health outcomes. Some issues brought up by the forum participants related to the lack of experience with a particular type of cancer on the part of healthcare providers. Facing this issue, participants felt pushed to seek out the interpretation of the diagnosis and advice on subsequent treatment independently. Our original oncologist said that my husband was the first case he ever saw of phenotypic leukemia and was likely the only case he ever WOULD see in his career. Is there anyone else who has faced this diagnosis out there…? (FP 164) Forum participants also identified the need to find a source of the second opinion as a possible impediment to the provision of coordinated care. Suggestions to seek a second opinion were frequently associated with ineffective previous treatments. However, patients expressed the feeling of being in-between two care provision teams, which led to the lack of trust and reliance on the original care providers. I have gone from taking methotrexate 15 mgs every 4 weeks to 15 mgs every 2 weeks and my doctor is not happy. I have been on this current dose for 4 months and my counts have improved but not good enough. So after all these years I was told to get a second opinion. […] I have lost confidence in my doctor that I have had for over 15 years. (FP 136) Other participants shared that healthcare teams were not providing sufficient explanation nor linking of the prognosis with the treatment plan. Subsequently, participants did not ascribe the positive outcomes of treatment to the actions of the care providers. I was diagnosed with AML in February 2012, I was told three different times I wouldnt make it. After five rounds of induction chemo and two stem cell transplants I’ve been in remission for fifteen months. (FP 335) Forum participants noted the disconnect in care and its outcomes that resulted from referral recommendations. In the example below, the participant gives a critical comment about a podiatrist who may have made the wrong treatment recommendation. This comment signals frustration with the lack of understanding of this patient’s specific health status and medical history, creating the responsibility for the patient to object to the recommended treatment. My only other trouble was a spot under one of my toenails. Right now, I’m not entirely sure what it was. The doctor doing rounds the day I was getting my chemo said it looked like an infection and told me to see a podiatrist. I did that, and the idiot thought I was ingrown and needed to be cut that day (even though my counts were rather low at the moment). I wouldn’t let him do that, so he suggested I do soaks in warm, soapy water. That cleared up the “infection” […] (FP 234) Another instance of the diffused care coordination responsibility manifested when oncology care providers were unable to supply knowledge support sought by patients. In the example below, a patient accepts the lack of knowledge among the primary oncology team stating that the answers to questions came from a healthcare provider from a different specialty. However, the choice of words used to describe the shared medical information, that is, “hinted,”, signals overall uncertainty and incompleteness of the received knowledge. I “thought” my progronosis was better until the oncologist announced leukemia returning. Furthermore, another MRI test was requested, and images shown the thoracic region compressed - once again - and a marrow grow in the lumbar region. […] I have consulted my medical oncology team and many of them are unable to answer my questions. Fortunately, a neurosurgeon has hinted to me that this might be a case of arachnoiditis or myletis. (FP 282) Achieving cohesive care Diffusion and shifting of responsibility from a healthcare team onto the patient was viewed as a gap. In light of this situation, achieving cohesive care emerged as a positive, forward-looking goal that is realized through the “construction” of new, situational pathways of care. For example, online forum participants recognized coordinated efforts between primary care and specialty providers, for example, “My counts were 15,000 which isn’t too high, but my primary care physician was on top of it and sent me to the oncologist.” (FP 287). However, once the perceived responsibility for disease management has shifted to oncologists, forum participants referred to them as new de facto primary care providers. Seeking cohesive care that targets all patient care needs, forum participants expressed an expectation for the signs and symptoms that are not directly associated with cancer to be recognized and managed by oncologists. In a sense, patients were appreciative of comprehensive evaluation and management as opposed to cancer-specific care management. As voiced by a participant in the quote below, he is expecting the oncologist to treat him as a whole human being rather than as a cancer survivor in remission. However, this participant acknowledged the diffusion (or, more strongly, the lack) of care for his joint pain but does not identify directly whether the oncologist or he himself is responsible to coordinate his care. This is an example of a care goal that has been articulated but not supported with a plan to help achieve it. I just got back from a visit with my oncologist and he said everything looked ok and he would see me in another year. He said no cancer, but something is very wrong with me, I have been having drenching night sweats for the last three weeks and my joints are really hurting. My toes on my left foot feel as if they were broken. My knee hurts and my hands are swelling and hurting too. (FP 197) In identifying their goals, participants expressed the need to fulfill their psychological and knowledge needs with the help of information from their care providers. The needs for psychological support and instrumental support were viewed as essential components for patient- and caregiver-centered care. Repeatedly, participants sought to gain the understanding of a health status reference point that was relevant and applicable to their situation. As identified by participants, one of the pathways to achieving the goal of cohesive care was through empathy expressed by providers. Patients and caregivers linked their health outcomes to the quality of communication between themselves and healthcare providers. The expectation of psychological support accompanied the management of individual disease manifestations and treatment side effects. However, as the quote below illustrates, participants also perceived a gap between the providers who are accustomed to seeing poor medical outcomes and patients who need to learn how to experience and manage them. I was diagnosed with AML Jan 2013. […] I have had no counts, low counts, neutropenia, high fever, even sudden allergy (to shell fish) resulting in antaflatic shock and barely made it. The support staff (drs and nurses) are use to this and sometimes don’t realize how scarry it is for us patients and their caregivers (you, my husband etc.). (FP 58) Patient–provider communication emerged as another pathway for achieving the goal of cohesive care. Here, a patient pointed out the lack of expertise by the healthcare team and the need to intervene to ensure the appropriate level of healthcare delivery. In this example, however, the patient fills the gap in care provision by taking agency and ownership of knowledge seeking. Furthermore, the experience described in the quote is representative of an autonomous but collaborative health self-management behavior. I’ve had CLL for a year. Prognostic indicators are CD38+, lymphocyte doubling time less than 12 months, 11q22 deleted. No one within my medical care team knew to look at these factors until I brought it to their attention by reading the CLL Topics Website. (FP 131) Planning strategies for the achievement of care coordination goals Social health management Online forum participants sought corroboration of treatment directions that were given to them by physicians from forum participants. Forum participants approached health management as a social behavior that manifests in seeking experiences and confirmation from peers. Importantly, medical recommendations were not questioned but rather deliberated online. They were also assessed against the experiences of others in search for a reference point that could help patients and caregivers in subsequent care and outcome assessment. i was wondering how many rounds of chemo you had and if you are in remisson my husband was dx the begining of oct he is recieving his 2 nd round of chemo the 1 st one did not put him in remisson the doctors tell me m2 is not that bad. (FP 314) Online forum participants expressed the need for more tailored, on-demand information that would address their specific questions without overwhelming them with facts that are not pertinent to their specific situation. The need for information was expressed as a general care management strategy to achieve care goals, which patients and caregivers sought to fulfill by learning about the experiences of others. Specifically, they were looking for cases and experiences that were most similar to theirs to use it as a proxy to judge the usefulness of the information they receive. Ive not heard of campath is this something new? I know we are all concerned with neutriphil counts, but Im also interested in lymphocyte levels, do yours fluctuate? If you dont mind me asking what is your age? I have found another parent who has a a child with LGL leukemia my daughter is 20 the other gentleman’s son is 17 or 18. Is your MD a specialist in this type of leukemia? Sorry about the 20 questions, but Im starving for new Info. (FP 196) Information and knowledge seeking was complemented by information sharing. Leukemia patients, realizing the challenges of finding reliable lay information, shared suggestions of sources they found. In effect, the online forum was used as a place for knowledge exchange, with the sharing of personal health information and queries for medical information. A lack of information about this rare disease is our worst enemy. Hopefully those writing these posts with questions over the past several years have already found the needed help. For anyone still searching for answers as well as helpful, current information regarding HCL, visit the Hairy Cell Leukemia Foundation web-site. (FP 117) In planning their communication, forum participants acknowledged the lack of support from health care practices and suggested an alternative strategy to manage the progression of the disease and treatment. In explaining the challenge in coping with the disease itself and the uncertainty of the outcomes, participants sought experiential support from peer survivors. As shown in the quote below, a mother is assigning the responsibility but not blame to healthcare providers for the lack of support. Immediately, she proposes an alternative strategy, connection through an online forum, which can fulfill the care coordination need that she has identified. However, this strategy is presented in a planning stage as it has not yet been adopted by her son, who would ultimately need to implement the approach. My 29 year old son was first diagnosed at the age of 16. He had a MUD BMT for AML. He has never dealt with his feeling about all he lost in the process. I wish there were counselors that specialized in counseling patients, and survivors. I think there is a huge need. Regardless, I believe that if he would connect with other survivors he could gain the ability to relate to someone who would understand the experience. (FP 225) The Internet was accepted as an essential source of information by patients and caregivers. They sought the sufficient quantity of information but also expected it to be in a format translated for the consumption by lay audiences. Identifying the Internet as a necessary source of information, the forum participant whose comment is quoted below speaks to the need for complementary sources of information, which is not uncommon . Since being diagnosed we’ve also been frustrated at the rarity of the disease and how it means there’s very little useful info available on the internet (that non-doctors can understand). (FP 303) Information seeking and sharing was not the behavior in itself, but rather a step in gaining essential functional literacy related to the understanding of the diagnosis and treatments. Participants sought to get a deeper understanding of their care options. The initial articulation of the need to gain functional literacy came in the form of an introduction with general questions about the disease and diagnosis. Hello,,got diagnosed 2 weeks ago.. Kinda scared as I don’t know much about the disease or anyone that has it. . . . I am 54 years old (FP 141) Subsequent queries for information were more specific to understanding the type of cancer a participant may have and the treatment process and options. Importantly, the more versed the participants became in talking about their disease, the more narrow, focused information they sought. This speaks to the situational, functional focus of their knowledge seeking and exchange rather than an interest in broader, general cancer health topics. Ive never Done anything like this But I would like to talk to someone about AML. I dont know what type I have. But I was diagnosed in September 2012 and am currently still going through the treatment process. […] Mabe someone could help me out and guide me through the rest of this process!! (FP 83) In gaining functional literacy, forum participants engaged in identifying new sources of knowledge and certainty through information filtering and avoidance. This coping mechanism  was used to manage the uncertainty associated with prognosis and treatment outcomes. Turning to external sources of information, as reported elsewhere in the findings was not the only strategy used by participants. In the quote below, a patient reported turning to self-assessment and subjective evaluation of health status. My count is currently 23,000. Got that number last Monday. The difference now is I don’t panic. I jusge all my blood results by how I feel. […] The numbers aren’t the factor...the factor is how you feel. You can have high numbers and no symptoms. (FP 287) Communication self-efficacy In communicating about the leukemia diagnosis or treatment, forum participants strived to achieve communication efficacy and become confident in their ability to discuss medical facts and information. Also trying to get my head around some of the medical verbiage and endless abbreviations, in the hope of being better-informed. (FP 280) However, as a sign of still-developing skills, individuals acknowledged their present lack of ability to communicate effectively. More explicit statements of self-doubt concerned with the spelling of medical terminology. My spouse has cll since 2010. Currently undergoing 2nd round of chemo. First was in 2010 and now the 2nd round. He is feeling horrible and it has been 3 weeks since his first infusion of rituxin. Sorry if I spelled it incorrectly. (FP 219) Participants also turned to the forum to deliberate impending changes in treatment and prepare for upcoming meetings with healthcare professionals. In the quote below, a caregiver is acknowledging that a possible decision to initiate chemotherapy presents a challenge to her and her husband, and she uses the online forum as a place to understand her values and preferences for the future decision. My husband was diagnosed in 1996. Started intravenous antibodies 10/08 .. IV-IgG (intravenous immune globulin treatment). Now 01/11 he is not feeling that energetic so 02/11 is meeting with his Oncologist to see if chemo is needed. This is a huge step for us .. that is why I sought out this forum. Didn’t know it existed. Hope to find help and perhaps solace here in the future. (FP 159) Yet, participants themselves reminded that disease progression and treatment is not the same for all patients, thus calling to set individual goals for treatment outcomes and develop individual communication plans. […] cancer patients with the same diagnosis don’t always react the same way to the chemo, isolation, complications, etc. The only source for info should be your oncologist. (FP 58) Uncertainty acceptance was another communication efficacy-development plan that emerged as a strategy to achieve care goals. Participants described their own planning for care and health management while accepting the incompleteness of general knowledge about leukemia. Negotiating and accepting uncertainty, forum participants deliberated about possible outcomes of their medical treatment. I am in the middle of my chemo and I have the same fears you expressed here. I don’t think the Dr’s know enough about Leukemia to answer these questions. (FP 139) Forum participants provided examples of their using communication skills to achieve improvements in health outcomes. The quote below is representative of a situation when a caregiver shows a communication plan in action. Here, a participant shares an example of a developed plan and its use. This knowledge sharing provided an example for other participants for vicarious experience, observation, and practice of their own communication skills that would lead to communication self-efficacy . Do his Lymphocyte levels fluctuate al all, my daughters are anywhere between 70 and 95. […] after looking at some bloodwork from that summer, of course no one picked up on it, pediatrician didnt even know about the high (89) lymphocytes until I showed him the blood work back in jan 09. (FP 196) Role deliberation Participants used online forum discussions to deliberate about the roles that they want and/or able to play in the process of care delivery. Three roles emerged: active, collaborative, and passive. An assumption of the role, in turn, would be used by the participant to take actions related to the achievement of the care coordination goals. Overall, the strategies for achieving the goal of care cohesion differed depending on the role that patients and caregivers expressed. Describing their active, autonomous role in care coordination, patients accepted responsibility to self-manage health. A forum participant whose experience is presented below noted the diffusion of responsibility between his wife, the primary caregiver, and the healthcare team. The patient felt the need to justify his and his caregiver’s qualifications to manage his health and prevent problems. Here, the patient described developing new care coordination strategies that are aligned with an autonomous role. However, this role may also result in assuming care offered by healthcare providers when talking about the reason for staying infection-free. I did get an infection (sepsis of a staph bacterium when I was in the hospital getting a transfusion[…]), but we’re fairly sure I actually got it in the hospital because a nurse didn’t scrub my central line port well enough with alcohol. My wife and I were EXTREMELY careful and she keeps the house as clean as a hospital (she’s a veterinarian, so is well aware of proper cleanliness standards), which has kept me from having other problems. (FP 234) Participants also wrote about their independence in searching for and assessing the information for decisions about their leukemia care. Thank godness for the internet and parents like us who question doctors diagnosis,when things dont seem right. (FP 196) “Collaborative, shared role” in care coordination was described by forum participants as a combination of consultation with healthcare providers and independent information seeking that lead to informed decisions. In the quote below, a patient described a decision about a medication dosage. Importantly, the situation described below includes both autonomous information seeking, as well as validation of the information and possible decision with a healthcare provider. About 6 months ago I started using Prednisone when feeling tired. at first it was from a prescription that I had from a previous course of treatments, then when I told my oncologist she agreed that I could easily take 10mg. a day if it made me feel better. Occasionally I increase that to 25mg if I start feeling really tired - it helps almost immediately. Look up the side effects of Prednisone on the Internet, then decide if it makes sense for you. (FP 43) Facing the lack of experience with a particular diagnosis, patients also turned for consultation and information from other forum participants. Turning to this social health management strategy, they did not reject the role of healthcare providers but rather sought to complement it with functional and experiential knowledge of other patients. Coping with the uncertainty and complexity of medical information, patients acknowledged the need for healthcare providers to serve as sources of information but expressed the intention to use complementary information sources. Facing potentially opposing medical opinions, patients expressed the need for explicitly stated options that include the assessment of risks and benefits of a potential decision. I really want to become pregnant, but I’m afraid. I hope that the disease will never come back, but the information on pregnancy after leukemia treatment which I found on the Internet does not clarify the situation and doctors also do not say anything definitely. Some of them are more or less optimistic and some of them scare me that the disease will come back and I will die. (FP 252) Passive, provider-dependent role The third role preference expressed by some forum participants was characterized by the reliance on healthcare providers for knowledge and decision making and removal of individual responsibility from the planning of strategies to achieve the care coordination goals. Provision of information was viewed as a responsibility of the healthcare providers, and when this responsibility is not fulfilled, it created a sense of being lost and unable to navigate the process of care delivery between patients and care providers. In the quote below, a caregiver is not maintaining the autonomy and agency in the care process but states the lack of informational support as an impediment for informed decision-making and evaluation of care outcomes and prognosis. My Mum was diagnosed 3 weeks ago and went straight into intensive Chemo. She has neutropenia so is in a solitary room. She has had ulcers in her mouth, a really bad throat, pains in her chest and now suspected gall bladder problems. Through all of this I feel we fumble along as we are not sure what each of these complications means and the medical staff do not give you a basic understanding […]Each day we continue blindly... (FP 22) DISCUSSION AND CONCLUSIONS This study examined conversations between cancer patients and caregivers on a leukemia-focused online forum maintained by the American Cancer Society. The qualitative analysis of the conversations was guided by the planning theory of communication and assessed goals and plans related to the coordination of cancer care. In the process of the analysis, two goals and three planning strategies emerged. Among care coordination issues, the goals of reducing diffusion of care responsibility and achieving care cohesion were central to patients and caregivers who participated in the online forum. The two identified goals, although complementary to one another, revealed opposite perspectives. On the one hand, conversations about the “diffusion of care responsibility” signaled perceived gaps in care coordination. Operationally, those gaps related to the perceived lack of provider expertise, insufficient explanation of a treatment plan, disconnects in care subsequent to a referral from a non-cancer healthcare provider, and seeking of a second opinion for which patients did not receive guidance from their primary cancer healthcare providers. On the other hand, forum comments related to the second goal, “achieving cohesive care,” provide practical insights into possible pathways to overcome these perceived gaps. Four operational pathways to achieving cohesive care included transparent actions by healthcare providers, comprehensive symptom evaluation and management, sufficient information support, and empathic communication. The first pathway to cohesive care refers to transparency in the coordination of care between primary care providers and specialists. This pathway would be different from the diffusion of responsibility for care coordination as it delineates the expertise of primary and specialty providers and gives the patient an understanding of the transfer of responsibility. The second pathway to cohesive care involved a comprehensive symptom evaluation and management. Positive outcomes from treating the whole patient and not the chief complaint are well presented in the literature. This study underlines the psychological aspect of care provision and the need to ensure that patients recognize being treated in comprehensive, wholesome a way. Two other pathways to achieving cohesive care were linked to communication and information behavior. Those pathways included provision of sufficient information related to the disease and treatment plan and empathic communication. Similar to the comprehensive symptom management, these pathways are related to patient-reported, rather than clinical, outcomes. The assessment of patient-reported outcomes is starting to permeate care provision, but most robust measurement instruments (such as PROMIS) focus on the collection of outcomes that correlate with clinical indicators (e.g., depression, health status). The development of outcomes related to the satisfaction of communication and information needs of patients would provide additional essential insights to the patients’ assessment of care provision and coordination. Three plans to achieve care coordination goals that emerged from the analysis were social health management, communication self-efficacy, and role deliberation. These plans were operationalized through a number of supporting strategies. Social health management included supporting strategies of peer experience exchange and the seeking of confirmation and comparison of personal experiences with those of others. Other strategies included seeking tailored, on-demand information, translation of information into lay language, sharing knowledge about medical facts, and obtaining functional literacy related to a particular diagnosis and treatment plan. Another planning strategy that emerged during the analysis was “communication self-efficacy, with the operational categories of the ability to discuss disease-specific terminology, develop individual communication strategies for interacting with healthcare providers and family members, and uncertainty acceptance. Gaining communication self-efficacy could prepare patients and survivors to be more involved in their care and be ready to manage their illness . Experiencing gaps in communication and care coordination, many health consumers seek instrumental support in their social circles, including online forums and networks. Communication with those who share similar experiences allows cancer patients, survivors, and caregivers to accumulate the social capital necessary for health self-management, gain self-efficacy in discussing the multitude of topics associated with cancer care coordination, and acquire knowledge from healthcare providers and social support circles. Information exchange on social media can also serve as an indicator for deficiencies and accomplishments of care provision, which has been acknowledged as one of the priority research areas by the National Cancer Institute . In terms of future research, the association between higher communication self-efficacy and coordinated care could be further tested. Finally, this study identified “role deliberation” as the third planning strategy. Three roles emerged, which could be aligned across a continuum from active, autonomous participation in care coordination, through collaborative, shared participation to passive, provider-dependent. Extending these earlier findings, this study suggests that online forums play a key role in providing patients and caregivers with the opportunity to develop communication self-efficacy, which can be achieved by individuals through online interactions with those who share similar experiences. Goals and their operational categories discussed previously can be used in practice to assess quality, identify gaps, and evaluate care coordination as perceived by patients. Planning strategies that were reported in this paper can further inform collaborative, patient-centered actions. Strategic communication actions could be employed by healthcare providers to support the goal of cohesive care coordination. Specifically, they should attempt to make their actions and reasoning for treatment plan decisions transparent to patients. The latter would also benefit from additional information support, which could be achieved thought the dissemination of patient-specific information through electronic medical records or as a printout to accompany the visit summary. The support for achieving goal of cohesive care coordination can also come from empathic communication. Here, providers themselves could be supported by communication training responsive to the needs of healthcare providers and sensitive to the pressures of efficiency in the provision of care . Technology-mediated solutions can also support the care coordination planning strategies that were identified in this study. In application to the practice of care provision, these findings suggest that patients could benefit from having access to social spaces of similar patients who can share experiential knowledge and not unprocessed factual information. Previous research suggests that online communities self-regulate, self-correct, and effectively guide newer online community members to seek advice from reliable, certified medical centers [44, 54]. Consequently, this study underlines that patients seek experiences from those who have had similar experiences, especially because those with rare diseases might not be geographically co-located or treated at the same healthcare facility. Therefore, online forums maintained by individual healthcare facilities may not attract enough forum participants to create a community that actively produces and continuously exchanges knowledge within itself. Overall, this study showed that care coordination is not limited to clinical interactions between patients, caregivers, and providers. The space “between” interactions with providers is wide and includes a multitude of social interactions in between clinical visits. Health care does not happen only during an outpatient visit or a hospital stay, but includes time and space before and after those visits. This space outside of clinical encounters is essential to the articulation of patient preferences and goals for disease treatment and health management, and enables the deliberation of plans to achieve those health management goals. Therefore, it is important to understand what care delivery goals are most pertinent and salient to patients and their families . Compliance with Ethical Standards Conflict of Interest: The authors have no conflict of interest to disclose. Primary Data: The findings reported in the article have not been previously published, and the manuscript is not being simultaneously submitted elsewhere. The data presented in this manuscript have not been presented previously. Control over data: The authors have full control of all presented data and agree to allow the journal to review their data if requested. Ethical Approval: All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed Consent: The protocol for the study receives an exempt determination, the data came from open public sources, and no consent was sought. No animals were used in the study reported here. References 1. Walsh J, Young JM, Harrison JDet al. What is important in cancer care coordination? A qualitative investigation. 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Translational Behavioral Medicine – Oxford University Press
Published: May 23, 2018
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