Copyright B 2015 Wolters Kluwer Health, Inc. All rights reserved.
Emma Cohen, PhD Mari Botti, PhD
Cancer Patients’ Perceptions of the Barriers and Facilitators to Patient Participation in Symptom Management During an Episode of Admission K E Y
W O R D S
Background: Symptoms by definition are subjective, and patients’ role in their
Acute care
assessment and management will impact on patient outcomes; thus, symptom
Cancer
management is an area of acute care practice where facilitation of patient
Patient participation
participation is vital if quality outcomes are to be achieved. Objective: This study
Symptom management
originated from a large multimethod research program exploring patient participation in symptom management in an acute oncology setting. The purpose of this article is to explore patients’ perceptions of the barriers and facilitators to participating in their symptom management during an episode of admission to an acute oncology ward and the relationships between these perceptions and patients’ preference for participation. Methods: One hundred seventy-one cancer inpatients consented and completed an interview-administered questionnaire. Patients’ preference for participation was measured using the Control Preference Scale. Responses to open-ended survey questions were evaluated using content analysis. Results: Ten categories were identified in the analyses of patient perceptions of the barriers and facilitators to participating in care decisions relating to their symptoms. Patients, irrespective of their Control Preference, reported multiple barriers and facilitators to participating in their symptom management. Conclusions: Patients overall perceived information as the most critical component of participation. Irrespective of patients’ preference for participation, there were similarities in the barriers and facilitators to the
Author Affiliations: Epworth/Deakin Centre for Clinical Nursing Research, Melbourne; and School of Nursing and Midwifery, Deakin University, Victoria, Australia. Support was provided through the Australian Postgraduate Award, Royal College of Nursing Australia, Australian Nursing Federation. The authors have no conflicts of interest to disclose.
Correspondence: Emma Cohen, PhD, Epworth/Deakin Centre for Clinical Nursing Research, 185-187 Hoddle St, Richmond, Victoria, Australia 3121 ([email protected]). Accepted for publication October 20, 2014. DOI: 10.1097/NCC.0000000000000226
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operationalization of participation in the acute care setting reported. Implications for Practice: Understanding patient perceptions of barriers and facilitators of participating in symptom management has provided important insights into person and system factors in the acute care sector impacting quality patient symptom outcomes.
P
atient participation in healthcare is widely regarded as fundamental to optimal quality of care.1 In general, studies reporting on the outcomes of patient participation in treatment decision making have had inconsistent findings; however, the majority do report that patient participation has resulted in positive outcomes2Y5 and improved agreement between patient values and treatment choice.3,5,6 In reality, patients differ in the extent to which they want to participate in healthcare and decision making.7Y15 Research of patient preferences using a number of different methods to elicit patient preferences has shown that patients prefer a passive role (leave all decisions to their healthcare provider) in decision making 7% to 78.3% of the time,16,17 a shared role between 17.4% to 63.5% of the time,17,18 and an active role (total control in decision making) 4% to 55.8% of the time.19,20 This research has been conducted across a variety of patient cohorts14,15,17,18,20Y25; the majority has been in patients with chronic diseases such as asthma, hypertension, and diabetes.23,26,27 Patient preference for participation has also been extensively studied in cancer14,15,17,21,28Y31; however, most of this work has been conducted in outpatient settings, and the focus has been on treatment decision making. In clinical settings, operationalizing or facilitating patient participation is difficult. Essentially, patient participation is dependent on patients’ preference for involvement, clinicians’ willingness to involve patients, and organisational structures and culture that accommodate patient participation.14 In the context of symptom management, the subjectivity of symptom experience necessitates that patients in acute care participate, at a minimum, in symptom identification and treatment evaluation. Furthermore, the preference for and extent to which patients participate during an episode of admission are currently not well understood. Investigating the barriers and facilitators of patient participation in symptom management will provide insights that will advance not only knowledge that is central to optimizing patient symptom outcomes but also knowledge of how patient participation is currently incorporated into routine clinical practice. The findings reported in this article represent the qualitative survey component of a larger multimethod study. These data were obtained via patient survey and provide the context for understanding patient perceptions of the barriers and facilitators to participating in symptom management during an episode of admission and the relationships between these perceptions and patients’ preference for participation.
n
Methods
This research program was conducted between October 2007 and October 2008 in the oncology ward of a tertiary referral hospital in Metropolitan Melbourne, Australia. Permission to conduct
this study was provided by the ethics committees of both the hospital and the affiliated university. All patients provided informed consent to participate. Since the data were collected, there have been no changes to processes of care in the institution where the data were collected that would suggest the findings lack currency.
Design The research program overall involved a case study design (single institution) with concurrent multimethods and repeated measures. Data collection methods included focus group interviews with nurses, naturalistic participant observation, medical record audit, and an interview-administered questionnaire. Repeated measures of patients’ preference for participation and symptom profile occurred using survey and medical record audit. Data from the survey, specifically, patient responses to the open-ended questions and the first time-point measure of preference for participation in symptom management, are reported in this article. SAMPLE
Consecutive patients with a diagnosis of cancer admitted to an acute oncology ward for a minimum of 48 hours were eligible to participate. Patients were not included if they were younger than 18 years or had a communication difficulty that could not be overcome with the assistance of an interpreter. Two hundred eighty-seven patients met the inclusion criteria; 171 patients (59.6%) consented to participate in the survey component of this research program. INSTRUMENT
A structured questionnaire was used to gather data from patients about their demographic and cancer information, their symptoms, and preference for participating in symptom management. The questionnaire was a compilation of validated questionnaires and questions (closed and open-ended) derived specifically for the purposes of this research to explore patients’ symptom profile, experience, and participation and was titled the ‘‘Multi-Symptom Assessment and Participation Questionnaire.’’ The survey was interview administered. All interviews were conducted by a single researcher. Patients’ perceptions of the barriers and facilitators to participating in their symptom management were derived via 2 openended survey questions allowing for a deeper exploration of patient experience of participation during their admission. Potential barriers were assessed through the question, ‘‘Have you found it difficult to participate in care decisions related to your symptoms during the past 24 hours? If yes, why was it difficult?’’ Facilitating factors were assessed through the question, ‘‘What do you believe made it easier to participate in your symptom
Patient Perceptions of the Barriers and Facilitators to Participation
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management in the past 24 hours? Patients’ preference for participation in their symptom management was assessed using the Control Preference Scale (CPS) role statements. The CPS consists of 5 role statements ranging from passive (leave all decisions to the doctors and nurses) to active (total control in decision making) control. The CPS has been used widely15,29,32,33 and was modified to measure patients’ preference for participation in symptom management during the previous 24 hours. Patients were asked to rank their preference from most preferred (1) to least preferred (5). Patients’ most preferred participatory role was used in the analysis to explore whether their Control Preference was a factor in their perceptions of barriers and facilitators to participating in their symptom management.
Analysis Patients’ demographic and illness-related data were analyzed using descriptive statistics (SPSS version 19; SPSS Inc, Chicago, Illinois). Patient responses to open-ended questions were recorded on the survey tool verbatim. The data extracted from each open-ended question were subjected to separate content analyses. The researcher who conducted the interviews (E.C.) analyzed patient responses independently using paper strips to identify common categories within the context of each question. Validation of these categories was obtained through review and discussion of the transcripts with the research supervisor (M.B.). All researchers were in agreement with the categories. n
Results
Patient Characteristics The patient sample was composed of a heterogeneous group of cancer patients admitted to an acute oncology/haematology setting for at least 48 hours. PATIENT DEMOGRAPHIC AND ILLNESS-RELATED CHARACTERISTICS
The demographic characteristics of the case study patients (n = 171) are presented in Table 1. The youngest participant was 21 years old, and the oldest was 85 years of age. The mean age was similar for both males and females: males 53.8 (SD, 16.2) years and females 53.4 (SD,13.9) years, t169 = 0.15, P = .88. The median number of months since diagnosis was 7; 50% of patients were diagnosed between 1 and 24 months prior to participation. Patient participants were born in 23 different countries. Of participants born in countries other than Australia, the mean age of arrival to Australia was 26.0 (SD, 15.6) years. The majority of participants spoke English as their main language at home (n = 161, 94.2%), and only 1 participant required an interpreter to complete the survey. CANCER- AND TREATMENT-RELATED CHARACTERISTICS
Cancer- and treatment-related characteristics were collected to allow for a deeper understanding of factors that may influence patients’ preference for participation (Table 2). The diagnoses of cancer were divided into 2 categories: oncology (neoplasm or solid tumor) and hematologic malignancies (leukemias, lymphomas,
Table 1 & Demographic Characteristics of Patients (n = 171)
Characteristics Age, y
Sex Male Female Highest level of education achieved Less than year 12 (or equivalent) Year 12 (or equivalent) Tertiary Postgraduate TAFE Apprenticeship Marital status Single De facto Married Divorced/separated Widowed Has childrena
Mean
SD
53.8
15.4
n
%
113 58
66.1 33.9
62 26 39 3 37 4
36.3 15.2 22.8 1.8 21.6 2.3
31 11 96 25 8 120
18.1 6.4 56.1 14.6 4.7 70.6
Abbreviation: TAFE, Tertiary and Further Education institutions. a Missing data, n = 1.
and multiple myeloma). The oncology category comprised 18 different types of tumor and the hematology category a range of leukemias and lymphomas. Cancer patients are admitted to hospital for a variety of reasons that can be broadly categorized into treatment (chemotherapy, radiotherapy) or symptom management. In terms of symptom management, patients may be admitted for symptom control or for diagnostic procedures/investigations for the purpose of identifying the causes of symptoms or an intervention to control symptoms, for example, PEG (percutaneous endoscopic gastronomy) tube insertion to enable patients to receive enteral nutrition. Patients reported a high symptom burden, having experienced a mean of 12.1 (SD, 4.9) symptoms in the 24 hours prior to the interview-administered questionnaire. PATIENT PREFERENCE FOR PARTICIPATION IN SYMPTOM MANAGEMENT
Patient preference for participation in symptom management was measured using the CPS. Patients’ preference was variable, with one-third of patients (29.8%) preferring a passive role by electing to leave all decisions about their symptom management to their doctors and nurses and 7.6% of patients preferring an active role by electing to make all decisions about their symptom management (Table 3). There were no demographic or illness-related characteristics that were associated with patients’ preference for participation. PATIENT PERCEPTIONS OF THE BARRIERS AND FACILITATORS TO PATIENT PARTICIPATION IN SYMPTOM MANAGEMENT
Incorporating patients as participants in their care requires clinicians to be responsive to the participatory role preference of patients. During the interview-administered survey, patients were asked
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Table 2 & Illness-Related Characteristics of Patients (n = 171)
Length of time since diagnosis, mo
Diagnosis Solid tumor Hematologic malignancy Reason for admission Symptom management Treatment
Median
Q25, Q75
7
1, 24
n
%
56 115
32.7 67.3
55 116
32.2 67.8
Hard to remember everything. (ID 59, passive) Can’t remember everything that has been said over time; therefore, it’s difficult to make decisions. (ID 64, active) Not remembering everything that is told to you. (ID 83, passive shared) Most information is verbal and it’s hard to remember. (ID 111, passive) The notion of time was also reported to be a barrier to participation. Time was most commonly discussed in terms of brief interactions with clinicians but also in relation to the limited time patients have to digest information before making decisions: [Clinicians] only here for 3 seconds. (ID 54, passive shared)
to describe what factors made it difficult for them to participate and what factors made it easier for them to participate in their symptom management during their admission. Patient responses were recorded verbatim on the survey tool, and the data extracted from each question were subjected to separate content analyses; however, the 10 categories identified during the analysis were applicable to both questions. BARRIERS TO PARTICIPATION
In total, 87 of 171 patients (50.9%) provided 99 statements of their perceptions of barriers to participation in their symptom care during the previous 24 hours. Ten separate categories were identified during content analyses of patient responses to ‘‘Have you found it difficult to participate in care decisions related to your symptoms during the past 24 hours? If yes, why was it difficult?’’ The categories identified for these analyses are presented in Table 4. Information was the most commonly identified barrier to patients’ ability to participate. Information was described in terms of being insufficient, for example, being ‘‘kept in the dark,’’ difficulty keeping up with the changes to plans of care, receiving information ‘‘after the fact,’’ and having to repeatedly ask for information rather than it being volunteered by clinicians. Patients also reported the problem associated with receiving too much information such as being ‘‘bombarded’’ as well as difficulties understanding information because of its predominant verbal format and the language used: Yes, because I haven’t known the results of the tests or I was waiting to have more tests. You can’t participate when you don’t know what’s going on. (ID 12, passive). You have to ask for more information, then you get bombarded with information but not in layman’s terms immediately followed by ‘‘any questions?’’ (ID 32, collaborative). You never know when you’re going to be taken for the next procedureVhalf the time you don’t know what it’s for because no one’s discussed it with you. (ID 66, active) I have to ask for information, and sometimes I can’t be bothered. Also, medical decisions change, and it’s difficult to keep up. (ID 67, collaborative) Not knowing whether information is biased. (ID 60, CPS, active) The notion of memory or ‘‘not being able to remember’’ was the second most prevalent barrier to patient participation:
Don’t have time. (ID 94, collaborative) When you need to make decisions quickly, but you’ve only just been given the facts. It’s hard, but you understand that they have to work within their own time constraints. They do their best on the ward rounds. (ID 112, passive shared). Patients also described behaviors that they had engaged in to overcome barriers to participation with regard to not having enough information and not being listened to: You’re in hospital ‘cause you’re sick, but you have to be so vigilant and forceful; otherwise, they don’t hear what you say. (ID 135, active shared)
Table 3 & Patient Preference for Participation Based on Responses to the Control Preference Scale
n (N = 171) % Active ‘‘Today I prefer to make the final decision about which treatment(s) I will receive for my symptoms.’’ Active-shared ‘‘Today I prefer to make the final decision about my symptom treatment(s) after seriously considering my doctor’s and nurse’s opinion. Collaborative ‘‘Today I prefer that the doctors, nurses, and I share responsibility for deciding which symptom treatment(s) is best for me.’’ Passive-shared ‘‘Today, I prefer that my doctors and nurses make the final decisions about which treatment(s) will be used to treat my symptoms, but seriously consider my opinion.’’ Passive ‘‘Today, I prefer to leave all decisions regarding treatment of my symptoms to my doctors and nurses.’’
Patient Perceptions of the Barriers and Facilitators to Participation
13
7.6
17
9.9
41
24
49
28.7
51
29.8
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9 9 29 21 29
Patient beliefs that may in themselves make it difficult for patients to participate were identified from responses: I don’t feel I need to participate. I trust the team. (ID 75, passive) I’m not a medical person. I think it’s best to follow the expert’s advice. (ID 156, passive)
0 0 1 0 0
The impacts of patients’ symptoms (symptom burden) were described by patients as making participation in care decisions more difficult:
0 2 0 1 0
When I feel sick, I do not have the energy or desire to participate. (ID 166, passive shared)
0 1 3 2 0
Patients also identified system/environment factors, particularly the number of clinicians with whom they interact as making participating in their care decisions more difficult: So many specialists. (ID 32, collaborative) Too many chiefs. (ID 160, passive shared)
0 0 3 3 1
Patients acknowledged that there were certain aspects of clinician behaviors that also made it difficult to participate:
0 0 1 3 3
Sometimes doctors and nurses don’t listen to you. They put forward their beliefs or thoughts but don’t hear yours on the same issue. (ID 90, passive shared)
0 0 1 2 4
They forget that you are part of the team. (ID 51, collaborative)
They ask you your opinion, and most of the time this is out of courtesy. They generally ignore you. (ID 119, collaborative). Things change without discussion. (ID 80 active)
1 0 5 1 2
The notion of rapport was deemed to assist in patients’ ability to participate as identified by the following quote: Lack of continuity with staff. It would be nice if you had a regular morning/afternoon and night nurse. Getting to know them certainly helps. (ID 124, passive shared). Making decisions without the presence of significant others was another factor that contributed to patients’ perceptions of what made it more difficult to participate: I want my wife to be present when making decision, but sometimes the doctors see me and discuss my health and treatment when she’s not there, and I can’t remember everything that was said. (ID 57, collaborative)
a
Patient illiterate.
related to your symptoms during the past 24 hours? If yes, why was it difficult?
0 0 0 0 1a
I’m not the expert. When they bring something for you, who am I to question or refuse it? (ID 157, passive)
When feeling lousy. (ID 30, passive shared)
Have you found it difficult to participate in care decisions Control Preference Active 6 1 1 Active-shared 3 2 1 Collaborative 6 6 3 Passive-shared 4 2 5 Passive 9 5 4
Rapport Family Other No. of Statements for Each (n = 3), n (n = 1), n (n = 1), n Control Preference Scale Role Clinician Behavior (n = 6), n System/ Patient Patient Symptom Environment Burden Behavior Beliefs Information Memory Time (n = 28), n (n = 16), n (n = 14), n (n = 9), n (n = 7), n (n = 7), n (n = 7), n
Categories Identified From Patient Responses (n = 99)
Table 4 & Categories Derived From Patient Perceptions of Barriers to Participation
I think I have nagged them enough now they give information freely. (ID 113, collaborative)
FACILITATORS FOR PARTICIPATION
A total of 105 of the total 171 patients (61.4%) provided their pereptions of what made it easier for them to participate in their symptom care during the previous 24 hours. Patient responses yielded
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Being kept up to date and clinicians’ willingness to answer questions and being forthright about options, for example, medications and their side effects. (ID 17, passive shared) The notion of rapport between patients and clinicians was also perceived by patients as important in making participating easier: Knowing the staff. (ID 4, collaborative) Good relationship with the staff. Respect their [doctors and nurses] opinion and have them respect yours. (ID 122, passive shared) Good rapport with staff is the most important. (ID 169, active) Patients described behaviors that they engaged in to assist them in participating as evidence in the following quotes: I’ve learnt if you don’t ask, you often don’t get told. (ID 123, collaborative) I listen to them, but sometimes, their advice is contradictory. I do my own research, and we work out the best plan. (ID 135, active shared) I got told by someone to be your own advocate, so I asked some questions this morning, and I got answers to things I wouldn’t otherwise have got answers to. (ID 157, passive) Patients also discussed many beliefs relating to ‘‘trust’’ and the notion that clinicians are the ‘‘experts’’:
Patient Perceptions of the Barriers and Facilitators to Participation
9 17 31 41 36 0 0 0 0 0 0 0 0 0 1 0 0 0 2 0 1 1 0 2 0 1 0 3 2 2 1 0 1 4 6 0 4 4 0 4 1 3 1 6 2
Because this is not my first admission or treatment with chemo[therapy], the doctors and nurses are asking me what has worked or not worked in the past. It makes me feel like they care and are really concerned about me. It’s also good to be a part of the team. (ID 85, collaborative)
2 6 2 4 3
Being listened toVit has enabled me to be involved with when I receive my antinausea medication to achieve the best result for myself. (ID 84, collaborative)
Table 5 & Categories Derived From Patient Perceptions of Facilitators for Participation
Clinicians’ facilitating behaviors were frequently described by patients and perceived to have made participation easier. These behaviors included incorporating patients in their care, listening to and respecting patients, and voluntarily reporting information:
0 2 8 5 4
Being given bite-size pieces of information makes it easier to absorb. (ID 164, collaborative)
3 1 12 16 14
Knowing what is available to choose between. (ID 125, collaborative)
What, if anything, do you believe has made it easier for you to participate in the care of your symptoms during the past 24 h? Active Active-shared Collaborative Passive-shared Passive
Having information. Remembering information. Having time to ask questions. (ID 101, passive shared)
No. of Statements for Clinician Patient Patient System/ Memory Symptom Each Control Information Behavior Rapport Time Behaviors Beliefs Family Environment (n = 2), Burden Other Preference (n = 46), n (n = 19), n (n-17), n (n = 13), n (n12), n (n = 12), n (n = 8), n (n = 4), n n (n = 1), n (n = 0), n Scale Role
They give you information and time to digest it. (ID 73, passive)
Categories Identified From Patient Responses (n = 134)
a total of 134 statements that were organized under the same 10 categories that were identified during the content analyses of barriers to participation. The categories identified for the analyses of patient responses to ‘‘What do you believe made it easier to participate in your own care in the past 24 hours?’’ are presented in Table 5. Similar to patient perceptions of what made it difficult to participate, information and time were both discussed and linked to making participation in care easier:
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Doctors are not going to suggest something that is bad for me. (ID 105, passive) Nurses and doctors are the experts. For example, you report nausea, and they sort out something to give you. (ID 30, passive shared) Participating in care was for some patients made easier by the presence of a significant other to hear the information and help in remembering that information (memory) as well as to assist in decision making: Good communication. Having my partner with me makes it easier to remember. (ID 144, passive shared) Having a second pair of ears, understanding what is being said, and having time to process it. (ID 150, passive shared) My familyVI have 1 daughter who is a nurse and 1 daughter who is a pharmacist. They understand things better and more thoroughly than me. I also can’t remember everything. I wouldn’t be able to make decisions without them. (ID 64, active) Finally, patients expressed ‘‘knowing the system’’ (system/ environment) as making it easier to participate: Getting used to the hospital system, I’m now far more demanding. Being given time to ask questions and not to be rushed for time. The ward is the hardest part because you encounter so many young ones [patient was referring to nursing staff]. (ID 91, active shared) I’ve been here for a month now. I know the system. (ID 114, passive shared).
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Discussion
Patient perceptions of the barriers and facilitators to participation in their symptom management were assessed using open-ended questions that formed part of a larger questionnaire (MultiSymptom Assessment and Participation Questionnaire). The content analyses of patient responses yielded 10 categories: information, time, memory, family, clinician behaviors, patient beliefs, patient behaviors, rapport, symptom burden, and system factors. The same 10 categories were applicable to both the barrier and facilitator data; however, the frequency of responses did vary. Similarities between reported facilitators and barriers to participation have been reported previously.18,34Y37 Patients’ preference for participation was assessed using the CPS. The findings highlighted that patients reported both barriers and facilitators to participation irrespective of their Control Preference. Insufficient information was the most commonly reported barrier to participation, whereas having information was the most reported facilitator. Patients referred to the importance of information in their ability to manage systems and to participate in their care; thus, not having information was also a barrier to participation. Patients reported wanting more information, a factor that is not unique to this study.19,21,38 Indeed, many reported patient behaviors involved asking clinicians for information. Doctors and nurses are not accurate at estimating the amount and type of information patients want or how effective they have been in imparting that information.39 The methods used by clinicians
to communicate information with patients may have implications for patients’ ability to participate. Memory was the second most frequently reported barrier to participation identified. Patient reports of difficulty remembering information are not unique to the current study.39,40 The Information Processing Theory was developed within the field of psychology to describe the process of decision making in terms of gathering information, weighing alternative options, and then making a final judgment.41 An assumption of the theory is bounded rationality.42 This theory claims that only a limited number of bits of information (7 T 2) can be stored and easily retrieved from short-term memory. All other information is stored in long-term memory, which is more difficult to assess. This is likely compounded in patients with cancer who may experience difficulties with memory, attention, and other aspects of cognitive function related to chemotherapy.43 How much information can be processed by patients at any one time is likely to be variable. During clinician-patient interactions, it is necessary to find a balance between underinforming and overloading with information.21 Patients in the current study reported having a family member present during clinical consultations was helpful because they were able to remember information for them. However, in the acute care setting, care is provided 24 hours a day, and it is likely that information is exchanged during each interaction, and there are less formal processes for scheduling consultations so that family members can be present. Time was identified in this study as the third largest barrier to participation and the fourth largest facilitator. Time has previously been identified as a major barrier to symptom assessment and symptom treatment.44,45 These findings highlight that, irrespective of patients’ preference for participation, there were important similarities in the reported barriers and facilitators to the operationalization of participation in the acute care setting that appear to be related to the nature of and the context within which interactions occur during care delivery .
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Conclusion
Patients identified a number of barriers and facilitators to the enactment of patient participation in acute care. These findings have implications for the delivery of patient-centered, safe, quality care. Patients overall perceived information as the most critical component of participation. Patients also identified time, memory, clinician behaviors, patient behaviors, patient beliefs, symptom burden, rapport, and family and system factors to be both barriers and facilitators to patient participation. The findings highlight both person and system factors that impact patients’ ability to participate in their symptom management during an episode of admission to an acute oncology setting, and these barriers and facilitators appear to be independent of patients’ preference for participation. The notion of patient participation as a method of improving the safety and quality of care continues to gain momentum. The common factors identified in this study suggest that patient opportunities to participate may be largely dependent on the care
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practices of individual clinicians. This points to the importance of enhancing both clinician and patients understanding of the patient role in symptom management and providing opportunities for patients to enact this. Additional research is needed to examine whether clinicians’ knowledge of patients’ preference for participation influences the way in which they tailor patients care and provide opportunities for patients to participate.
References
22.
23. 24.
25.
1. Longtin Y, Sax H, Leape LL, Sheridan SE, Donaldson L, Pittet D. Patient participation: current knowledge and applicability to patient safety. Mayo Clin Proc. 2010;85(1):53Y62. 2. Henderson A. Boundaries around the ‘well-informed’ patient: the contribution of Schutz to inform nurses’ interactions. J Clin Nurs. 2006;15(1):4Y10. 3. Sainio C, Lauri S, Eriksson E. Cancer patients’ views and experiences of participation in care and decision making. Nurs Ethics. 2001;8(2):97Y113. 4. Coulter A. After Bristol: putting patients at the centre. Qual Saf Health Care. 2002;11:186Y188. 5. O’Connor AM, Stacey D, Entwistle V, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2003; (2):CD001431. 6. Ruland CM. Improving patient outcomes by including patient preferences in nursing care. Proc AMIA Symp. 1998;448Y452. 7. Kiesler DJ, Auerbach SM. Optimal matches of patient preferences for information, decision-making and interpersonal behavior: evidence, models and interventions. Patient Educ Couns. 2006;61(3):319Y341. 8. Stromgren AS, Groenvold M, Pedersen L, Olsen AK, Spile M, Sjogren P. Does the medical record cover the symptoms experienced by cancer patients receiving palliative care? A comparison of the record and patient self-rating. J Pain Symptom Manage. 2001;21(3):189Y196. 9. Stromgren AS, Groenvold M, Sorensen A, Andersen L. Symptom recognition in advanced cancer. A comparison of nursing records against patient self-rating. Acta Anaesthesiol Scand. 2001;45(9):1080Y1085. 10. Florin J, Ehrenberg A, Ehnfors M. Clinical decision-making: predictors of patient participation in nursing care. J Clin Nurs. 2008;17(21):2935Y2944. 11. Sahlsten MJ, Larsson IE, Plos KA, Lindencrona CS. Hindrance for patient participation in nursing care. Scand J Caring Sci. 2005;19(3):223Y229. 12. Waterworth S, Luker KA. Reluctant collaborators: do patients want to be involved in decisions concerning care? J Adv Nurs. 1990;15(8):971Y976. 13. Biley FC. Some determinants that effect patient participation in decisionmaking about nursing care. J Adv Nurs. 1992;17(4):414Y421. 14. Florin J, Ehrenberg A, Ehnfors M. Patient participation in clinical decisionmaking in nursing: a comparative study of nurses’ and patients’ perceptions. J Clin Nurs. 2006;15(12):1498Y1508. 15. Degner LF, Sloan JA. Decision making during serious illness: what role do patients really want to play? J Clin Epidemiol. 1992;45(9):941Y950. 16. Davison BJ, Goldenberg SL, Gleave ME, Degner LF. Provision of individualized information to men and their partners to facilitate treatment decision making in prostate cancer. Oncol Nurs Forum. 2003;30(1):107Y114. 17. Beaver K, Bogg J, Luker KA. Decision-making role preferences and information needs: a comparison of colorectal and breast cancer. Health Expect. 1999; 2(4):266Y276. 18. Keatinge D, Bellchambers H, Bujack E, Cholowski K, Conway J, Neal P. Communication: principal barrier to nurse-consumer partnerships. Int J Nurs Pract. 2002;8(1):16Y22. 19. Beaver K, Booth K. Information needs and decision-making preferences: comparing findings for gynaecological, breast and colorectal cancer. Eur J Oncol Nurs. 2007;11(5):409Y416. 20. Davison BJ, Goldenberg SL, Wiens KP, Gleave ME. Comparing a generic and individualized information decision support intervention for men newly diagnosed with localized prostate cancer. Cancer Nurs. 2007;30(5):E7YE15. 21. Butow PN, Maclean M, Dunn SM, Tattersall MH, Boyer MJ. The dynamics
26.
27.
28.
29. 30.
31.
32.
33. 34.
35.
36.
37.
38. 39. 40. 41. 42. 43. 44.
45.
of change: cancer patients’ preferences for information, involvement and support. Ann Oncol. 1997;8(9):857Y863. Deber RB, Kraetschmer N, Urowitz S, Sharpe N. Do people want to be autonomous patients? Preferred roles in treatment decision-making in several patient populations. Health Expect. 2007;10(3):248Y258. Arora NK, McHorney CA. Patient preferences for medical decision making: who really wants to participate? Med Care. 2000;38(3):335Y341. Tariman JD, Berry DL, Cochrane B, Doorenbos A, Schepp K. Preferred and actual participation roles during health care decision making in persons with cancer: a systematic review. Ann Oncol. 2010;21(6):1145Y1151. Davison BJ, So AI, Goldenberg SL. Quality of life, sexual function and decisional regret at 1 year after surgical treatment for localized prostate cancer. BJU Int. 2007;100(4):780Y785. Caress AL, Luker K, Woodcock A, Beaver K. A qualitative exploration of treatment decision-making role preference in adult asthma patients. Health Expect. 2002;5(3):223Y235. Wright CC, Barlow JH, Turner AP, Bancroft GV. Self-management training for people with chronic disease: an exploratory study. Br J Health Psychol. 2003;8(pt 4):465Y476. Cadd A, Keatinge D, Henssen M, et al. Assessment and documentation of bowel care management in palliative care: incorporating patient preferences into the care regimen. J Clin Nurs. 2000;9(2):228Y235. Florin J, Ehrenberg A, Ehnfors M. Patient participation in decision making in nursing. Stud Health Technol Inform. 2006;122:54Y57. Hubbard G, Kidd L, Donaghy E. Preferences for involvement in treatment decision making of patients with cancer: a review of the literature. Eur J Oncol Nurs. 2008;12(4):299Y318. Kidd L, Hubbard G, O’Carroll R, Kearney N. Perceived control and involvement in self care in patients with colorectal cancer. J Clin Nurs. 2009;18(16): 2292Y2300. Singh JA, Sloan JA, Atherton PJ, et al. Preferred roles in treatment decision making among patients with cancer: a pooled analysis of studies using the Control Preferences Scale. Am J Manag Care. 2010;16(9):688Y696. Ford S, Schofield T, Hope T. Are patients’ decision-making preferences being met? Health Expect. 2003;6(1):72Y80. Eldh AC, Ehnfors M, Ekman I. The phenomena of participation and nonparticipation in health careVexperiences of patients attending a nurse-led clinic for chronic heart failure. Eur J Cardiovasc Nurs. 2004;3(3):239Y246. Coulter A, Parsons S, Askham J. Where Are the Patients in Decision-Making About Their Own Care? Copenhagen, Denmark: World Health Organisation; 2008. Edwards M, Davies M, Edwards A. What are the external influences on information exchange and shared decision-making in healthcare consultations: a meta-synthesis of the literature. Patient Educ Couns. 2009;75(1):37Y52. Millard L, Hallett C, Luker K. Nurse-patient interaction and decisionmaking in care: patient involvement in community nursing. J Adv Nurs. 2006;55(2):142Y150. Degner LF, Kristjanson LJ, Bowman D, et al. Information needs and decisional preferences in women with breast cancer. JAMA. 1997;277(18):1485Y1492. Epstein RM, Alper BS, Quill TE. Communicating evidence for participatory decision making. JAMA. 2004;291(19):2359Y2366. Whitney SN. A new model of medical decisions: exploring the limits of shared decision making. Med Decis Making. 2003;23(4):275Y280. Newell A, Simon HA. Human Problem Solving. Englewood Cliffs, NJ: Prentice-Hall; 1972. Miller G. The magical number seven, plus or minus two: some limits on our capacity for processing information. Psychol Rev. 1952;63(2):81Y97. Staat K, Segatore M. The phenomenon of chemo brain. Clin J Oncol Nurs. 2005;9(6):713Y721. Gunnarsdottir S, Donovan HS, Ward S. Interventions to overcome clinicianand patient-related barriers to pain management. Nurs Clin North Am. 2003; 38(3):419Y434, v. Von Roenn JH, Cleeland CS, Gonin R, Hatfield AK, Pandya KJ. Physician attitudes and practice in cancer pain management. A survey from the Eastern Cooperative Oncology Group. Ann Intern Med. 1993;119(2):121Y126.
Patient Perceptions of the Barriers and Facilitators to Participation
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Emma Cohen, PhD Mari Botti, PhD
Cancer Patients’ Perceptions of the Barriers and Facilitators to Patient Participation in Symptom Management During an Episode of Admission K E Y
W O R D S
Background: Symptoms by definition are subjective, and patients’ role in their
Acute care
assessment and management will impact on patient outcomes; thus, symptom
Cancer
management is an area of acute care practice where facilitation of patient
Patient participation
participation is vital if quality outcomes are to be achieved. Objective: This study
Symptom management
originated from a large multimethod research program exploring patient participation in symptom management in an acute oncology setting. The purpose of this article is to explore patients’ perceptions of the barriers and facilitators to participating in their symptom management during an episode of admission to an acute oncology ward and the relationships between these perceptions and patients’ preference for participation. Methods: One hundred seventy-one cancer inpatients consented and completed an interview-administered questionnaire. Patients’ preference for participation was measured using the Control Preference Scale. Responses to open-ended survey questions were evaluated using content analysis. Results: Ten categories were identified in the analyses of patient perceptions of the barriers and facilitators to participating in care decisions relating to their symptoms. Patients, irrespective of their Control Preference, reported multiple barriers and facilitators to participating in their symptom management. Conclusions: Patients overall perceived information as the most critical component of participation. Irrespective of patients’ preference for participation, there were similarities in the barriers and facilitators to the
Author Affiliations: Epworth/Deakin Centre for Clinical Nursing Research, Melbourne; and School of Nursing and Midwifery, Deakin University, Victoria, Australia. Support was provided through the Australian Postgraduate Award, Royal College of Nursing Australia, Australian Nursing Federation. The authors have no conflicts of interest to disclose.
Correspondence: Emma Cohen, PhD, Epworth/Deakin Centre for Clinical Nursing Research, 185-187 Hoddle St, Richmond, Victoria, Australia 3121 ([email protected]). Accepted for publication October 20, 2014. DOI: 10.1097/NCC.0000000000000226
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operationalization of participation in the acute care setting reported. Implications for Practice: Understanding patient perceptions of barriers and facilitators of participating in symptom management has provided important insights into person and system factors in the acute care sector impacting quality patient symptom outcomes.
P
atient participation in healthcare is widely regarded as fundamental to optimal quality of care.1 In general, studies reporting on the outcomes of patient participation in treatment decision making have had inconsistent findings; however, the majority do report that patient participation has resulted in positive outcomes2Y5 and improved agreement between patient values and treatment choice.3,5,6 In reality, patients differ in the extent to which they want to participate in healthcare and decision making.7Y15 Research of patient preferences using a number of different methods to elicit patient preferences has shown that patients prefer a passive role (leave all decisions to their healthcare provider) in decision making 7% to 78.3% of the time,16,17 a shared role between 17.4% to 63.5% of the time,17,18 and an active role (total control in decision making) 4% to 55.8% of the time.19,20 This research has been conducted across a variety of patient cohorts14,15,17,18,20Y25; the majority has been in patients with chronic diseases such as asthma, hypertension, and diabetes.23,26,27 Patient preference for participation has also been extensively studied in cancer14,15,17,21,28Y31; however, most of this work has been conducted in outpatient settings, and the focus has been on treatment decision making. In clinical settings, operationalizing or facilitating patient participation is difficult. Essentially, patient participation is dependent on patients’ preference for involvement, clinicians’ willingness to involve patients, and organisational structures and culture that accommodate patient participation.14 In the context of symptom management, the subjectivity of symptom experience necessitates that patients in acute care participate, at a minimum, in symptom identification and treatment evaluation. Furthermore, the preference for and extent to which patients participate during an episode of admission are currently not well understood. Investigating the barriers and facilitators of patient participation in symptom management will provide insights that will advance not only knowledge that is central to optimizing patient symptom outcomes but also knowledge of how patient participation is currently incorporated into routine clinical practice. The findings reported in this article represent the qualitative survey component of a larger multimethod study. These data were obtained via patient survey and provide the context for understanding patient perceptions of the barriers and facilitators to participating in symptom management during an episode of admission and the relationships between these perceptions and patients’ preference for participation.
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Methods
This research program was conducted between October 2007 and October 2008 in the oncology ward of a tertiary referral hospital in Metropolitan Melbourne, Australia. Permission to conduct
this study was provided by the ethics committees of both the hospital and the affiliated university. All patients provided informed consent to participate. Since the data were collected, there have been no changes to processes of care in the institution where the data were collected that would suggest the findings lack currency.
Design The research program overall involved a case study design (single institution) with concurrent multimethods and repeated measures. Data collection methods included focus group interviews with nurses, naturalistic participant observation, medical record audit, and an interview-administered questionnaire. Repeated measures of patients’ preference for participation and symptom profile occurred using survey and medical record audit. Data from the survey, specifically, patient responses to the open-ended questions and the first time-point measure of preference for participation in symptom management, are reported in this article. SAMPLE
Consecutive patients with a diagnosis of cancer admitted to an acute oncology ward for a minimum of 48 hours were eligible to participate. Patients were not included if they were younger than 18 years or had a communication difficulty that could not be overcome with the assistance of an interpreter. Two hundred eighty-seven patients met the inclusion criteria; 171 patients (59.6%) consented to participate in the survey component of this research program. INSTRUMENT
A structured questionnaire was used to gather data from patients about their demographic and cancer information, their symptoms, and preference for participating in symptom management. The questionnaire was a compilation of validated questionnaires and questions (closed and open-ended) derived specifically for the purposes of this research to explore patients’ symptom profile, experience, and participation and was titled the ‘‘Multi-Symptom Assessment and Participation Questionnaire.’’ The survey was interview administered. All interviews were conducted by a single researcher. Patients’ perceptions of the barriers and facilitators to participating in their symptom management were derived via 2 openended survey questions allowing for a deeper exploration of patient experience of participation during their admission. Potential barriers were assessed through the question, ‘‘Have you found it difficult to participate in care decisions related to your symptoms during the past 24 hours? If yes, why was it difficult?’’ Facilitating factors were assessed through the question, ‘‘What do you believe made it easier to participate in your symptom
Patient Perceptions of the Barriers and Facilitators to Participation
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management in the past 24 hours? Patients’ preference for participation in their symptom management was assessed using the Control Preference Scale (CPS) role statements. The CPS consists of 5 role statements ranging from passive (leave all decisions to the doctors and nurses) to active (total control in decision making) control. The CPS has been used widely15,29,32,33 and was modified to measure patients’ preference for participation in symptom management during the previous 24 hours. Patients were asked to rank their preference from most preferred (1) to least preferred (5). Patients’ most preferred participatory role was used in the analysis to explore whether their Control Preference was a factor in their perceptions of barriers and facilitators to participating in their symptom management.
Analysis Patients’ demographic and illness-related data were analyzed using descriptive statistics (SPSS version 19; SPSS Inc, Chicago, Illinois). Patient responses to open-ended questions were recorded on the survey tool verbatim. The data extracted from each open-ended question were subjected to separate content analyses. The researcher who conducted the interviews (E.C.) analyzed patient responses independently using paper strips to identify common categories within the context of each question. Validation of these categories was obtained through review and discussion of the transcripts with the research supervisor (M.B.). All researchers were in agreement with the categories. n
Results
Patient Characteristics The patient sample was composed of a heterogeneous group of cancer patients admitted to an acute oncology/haematology setting for at least 48 hours. PATIENT DEMOGRAPHIC AND ILLNESS-RELATED CHARACTERISTICS
The demographic characteristics of the case study patients (n = 171) are presented in Table 1. The youngest participant was 21 years old, and the oldest was 85 years of age. The mean age was similar for both males and females: males 53.8 (SD, 16.2) years and females 53.4 (SD,13.9) years, t169 = 0.15, P = .88. The median number of months since diagnosis was 7; 50% of patients were diagnosed between 1 and 24 months prior to participation. Patient participants were born in 23 different countries. Of participants born in countries other than Australia, the mean age of arrival to Australia was 26.0 (SD, 15.6) years. The majority of participants spoke English as their main language at home (n = 161, 94.2%), and only 1 participant required an interpreter to complete the survey. CANCER- AND TREATMENT-RELATED CHARACTERISTICS
Cancer- and treatment-related characteristics were collected to allow for a deeper understanding of factors that may influence patients’ preference for participation (Table 2). The diagnoses of cancer were divided into 2 categories: oncology (neoplasm or solid tumor) and hematologic malignancies (leukemias, lymphomas,
Table 1 & Demographic Characteristics of Patients (n = 171)
Characteristics Age, y
Sex Male Female Highest level of education achieved Less than year 12 (or equivalent) Year 12 (or equivalent) Tertiary Postgraduate TAFE Apprenticeship Marital status Single De facto Married Divorced/separated Widowed Has childrena
Mean
SD
53.8
15.4
n
%
113 58
66.1 33.9
62 26 39 3 37 4
36.3 15.2 22.8 1.8 21.6 2.3
31 11 96 25 8 120
18.1 6.4 56.1 14.6 4.7 70.6
Abbreviation: TAFE, Tertiary and Further Education institutions. a Missing data, n = 1.
and multiple myeloma). The oncology category comprised 18 different types of tumor and the hematology category a range of leukemias and lymphomas. Cancer patients are admitted to hospital for a variety of reasons that can be broadly categorized into treatment (chemotherapy, radiotherapy) or symptom management. In terms of symptom management, patients may be admitted for symptom control or for diagnostic procedures/investigations for the purpose of identifying the causes of symptoms or an intervention to control symptoms, for example, PEG (percutaneous endoscopic gastronomy) tube insertion to enable patients to receive enteral nutrition. Patients reported a high symptom burden, having experienced a mean of 12.1 (SD, 4.9) symptoms in the 24 hours prior to the interview-administered questionnaire. PATIENT PREFERENCE FOR PARTICIPATION IN SYMPTOM MANAGEMENT
Patient preference for participation in symptom management was measured using the CPS. Patients’ preference was variable, with one-third of patients (29.8%) preferring a passive role by electing to leave all decisions about their symptom management to their doctors and nurses and 7.6% of patients preferring an active role by electing to make all decisions about their symptom management (Table 3). There were no demographic or illness-related characteristics that were associated with patients’ preference for participation. PATIENT PERCEPTIONS OF THE BARRIERS AND FACILITATORS TO PATIENT PARTICIPATION IN SYMPTOM MANAGEMENT
Incorporating patients as participants in their care requires clinicians to be responsive to the participatory role preference of patients. During the interview-administered survey, patients were asked
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Table 2 & Illness-Related Characteristics of Patients (n = 171)
Length of time since diagnosis, mo
Diagnosis Solid tumor Hematologic malignancy Reason for admission Symptom management Treatment
Median
Q25, Q75
7
1, 24
n
%
56 115
32.7 67.3
55 116
32.2 67.8
Hard to remember everything. (ID 59, passive) Can’t remember everything that has been said over time; therefore, it’s difficult to make decisions. (ID 64, active) Not remembering everything that is told to you. (ID 83, passive shared) Most information is verbal and it’s hard to remember. (ID 111, passive) The notion of time was also reported to be a barrier to participation. Time was most commonly discussed in terms of brief interactions with clinicians but also in relation to the limited time patients have to digest information before making decisions: [Clinicians] only here for 3 seconds. (ID 54, passive shared)
to describe what factors made it difficult for them to participate and what factors made it easier for them to participate in their symptom management during their admission. Patient responses were recorded verbatim on the survey tool, and the data extracted from each question were subjected to separate content analyses; however, the 10 categories identified during the analysis were applicable to both questions. BARRIERS TO PARTICIPATION
In total, 87 of 171 patients (50.9%) provided 99 statements of their perceptions of barriers to participation in their symptom care during the previous 24 hours. Ten separate categories were identified during content analyses of patient responses to ‘‘Have you found it difficult to participate in care decisions related to your symptoms during the past 24 hours? If yes, why was it difficult?’’ The categories identified for these analyses are presented in Table 4. Information was the most commonly identified barrier to patients’ ability to participate. Information was described in terms of being insufficient, for example, being ‘‘kept in the dark,’’ difficulty keeping up with the changes to plans of care, receiving information ‘‘after the fact,’’ and having to repeatedly ask for information rather than it being volunteered by clinicians. Patients also reported the problem associated with receiving too much information such as being ‘‘bombarded’’ as well as difficulties understanding information because of its predominant verbal format and the language used: Yes, because I haven’t known the results of the tests or I was waiting to have more tests. You can’t participate when you don’t know what’s going on. (ID 12, passive). You have to ask for more information, then you get bombarded with information but not in layman’s terms immediately followed by ‘‘any questions?’’ (ID 32, collaborative). You never know when you’re going to be taken for the next procedureVhalf the time you don’t know what it’s for because no one’s discussed it with you. (ID 66, active) I have to ask for information, and sometimes I can’t be bothered. Also, medical decisions change, and it’s difficult to keep up. (ID 67, collaborative) Not knowing whether information is biased. (ID 60, CPS, active) The notion of memory or ‘‘not being able to remember’’ was the second most prevalent barrier to patient participation:
Don’t have time. (ID 94, collaborative) When you need to make decisions quickly, but you’ve only just been given the facts. It’s hard, but you understand that they have to work within their own time constraints. They do their best on the ward rounds. (ID 112, passive shared). Patients also described behaviors that they had engaged in to overcome barriers to participation with regard to not having enough information and not being listened to: You’re in hospital ‘cause you’re sick, but you have to be so vigilant and forceful; otherwise, they don’t hear what you say. (ID 135, active shared)
Table 3 & Patient Preference for Participation Based on Responses to the Control Preference Scale
n (N = 171) % Active ‘‘Today I prefer to make the final decision about which treatment(s) I will receive for my symptoms.’’ Active-shared ‘‘Today I prefer to make the final decision about my symptom treatment(s) after seriously considering my doctor’s and nurse’s opinion. Collaborative ‘‘Today I prefer that the doctors, nurses, and I share responsibility for deciding which symptom treatment(s) is best for me.’’ Passive-shared ‘‘Today, I prefer that my doctors and nurses make the final decisions about which treatment(s) will be used to treat my symptoms, but seriously consider my opinion.’’ Passive ‘‘Today, I prefer to leave all decisions regarding treatment of my symptoms to my doctors and nurses.’’
Patient Perceptions of the Barriers and Facilitators to Participation
13
7.6
17
9.9
41
24
49
28.7
51
29.8
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9 9 29 21 29
Patient beliefs that may in themselves make it difficult for patients to participate were identified from responses: I don’t feel I need to participate. I trust the team. (ID 75, passive) I’m not a medical person. I think it’s best to follow the expert’s advice. (ID 156, passive)
0 0 1 0 0
The impacts of patients’ symptoms (symptom burden) were described by patients as making participation in care decisions more difficult:
0 2 0 1 0
When I feel sick, I do not have the energy or desire to participate. (ID 166, passive shared)
0 1 3 2 0
Patients also identified system/environment factors, particularly the number of clinicians with whom they interact as making participating in their care decisions more difficult: So many specialists. (ID 32, collaborative) Too many chiefs. (ID 160, passive shared)
0 0 3 3 1
Patients acknowledged that there were certain aspects of clinician behaviors that also made it difficult to participate:
0 0 1 3 3
Sometimes doctors and nurses don’t listen to you. They put forward their beliefs or thoughts but don’t hear yours on the same issue. (ID 90, passive shared)
0 0 1 2 4
They forget that you are part of the team. (ID 51, collaborative)
They ask you your opinion, and most of the time this is out of courtesy. They generally ignore you. (ID 119, collaborative). Things change without discussion. (ID 80 active)
1 0 5 1 2
The notion of rapport was deemed to assist in patients’ ability to participate as identified by the following quote: Lack of continuity with staff. It would be nice if you had a regular morning/afternoon and night nurse. Getting to know them certainly helps. (ID 124, passive shared). Making decisions without the presence of significant others was another factor that contributed to patients’ perceptions of what made it more difficult to participate: I want my wife to be present when making decision, but sometimes the doctors see me and discuss my health and treatment when she’s not there, and I can’t remember everything that was said. (ID 57, collaborative)
a
Patient illiterate.
related to your symptoms during the past 24 hours? If yes, why was it difficult?
0 0 0 0 1a
I’m not the expert. When they bring something for you, who am I to question or refuse it? (ID 157, passive)
When feeling lousy. (ID 30, passive shared)
Have you found it difficult to participate in care decisions Control Preference Active 6 1 1 Active-shared 3 2 1 Collaborative 6 6 3 Passive-shared 4 2 5 Passive 9 5 4
Rapport Family Other No. of Statements for Each (n = 3), n (n = 1), n (n = 1), n Control Preference Scale Role Clinician Behavior (n = 6), n System/ Patient Patient Symptom Environment Burden Behavior Beliefs Information Memory Time (n = 28), n (n = 16), n (n = 14), n (n = 9), n (n = 7), n (n = 7), n (n = 7), n
Categories Identified From Patient Responses (n = 99)
Table 4 & Categories Derived From Patient Perceptions of Barriers to Participation
I think I have nagged them enough now they give information freely. (ID 113, collaborative)
FACILITATORS FOR PARTICIPATION
A total of 105 of the total 171 patients (61.4%) provided their pereptions of what made it easier for them to participate in their symptom care during the previous 24 hours. Patient responses yielded
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Being kept up to date and clinicians’ willingness to answer questions and being forthright about options, for example, medications and their side effects. (ID 17, passive shared) The notion of rapport between patients and clinicians was also perceived by patients as important in making participating easier: Knowing the staff. (ID 4, collaborative) Good relationship with the staff. Respect their [doctors and nurses] opinion and have them respect yours. (ID 122, passive shared) Good rapport with staff is the most important. (ID 169, active) Patients described behaviors that they engaged in to assist them in participating as evidence in the following quotes: I’ve learnt if you don’t ask, you often don’t get told. (ID 123, collaborative) I listen to them, but sometimes, their advice is contradictory. I do my own research, and we work out the best plan. (ID 135, active shared) I got told by someone to be your own advocate, so I asked some questions this morning, and I got answers to things I wouldn’t otherwise have got answers to. (ID 157, passive) Patients also discussed many beliefs relating to ‘‘trust’’ and the notion that clinicians are the ‘‘experts’’:
Patient Perceptions of the Barriers and Facilitators to Participation
9 17 31 41 36 0 0 0 0 0 0 0 0 0 1 0 0 0 2 0 1 1 0 2 0 1 0 3 2 2 1 0 1 4 6 0 4 4 0 4 1 3 1 6 2
Because this is not my first admission or treatment with chemo[therapy], the doctors and nurses are asking me what has worked or not worked in the past. It makes me feel like they care and are really concerned about me. It’s also good to be a part of the team. (ID 85, collaborative)
2 6 2 4 3
Being listened toVit has enabled me to be involved with when I receive my antinausea medication to achieve the best result for myself. (ID 84, collaborative)
Table 5 & Categories Derived From Patient Perceptions of Facilitators for Participation
Clinicians’ facilitating behaviors were frequently described by patients and perceived to have made participation easier. These behaviors included incorporating patients in their care, listening to and respecting patients, and voluntarily reporting information:
0 2 8 5 4
Being given bite-size pieces of information makes it easier to absorb. (ID 164, collaborative)
3 1 12 16 14
Knowing what is available to choose between. (ID 125, collaborative)
What, if anything, do you believe has made it easier for you to participate in the care of your symptoms during the past 24 h? Active Active-shared Collaborative Passive-shared Passive
Having information. Remembering information. Having time to ask questions. (ID 101, passive shared)
No. of Statements for Clinician Patient Patient System/ Memory Symptom Each Control Information Behavior Rapport Time Behaviors Beliefs Family Environment (n = 2), Burden Other Preference (n = 46), n (n = 19), n (n-17), n (n = 13), n (n12), n (n = 12), n (n = 8), n (n = 4), n n (n = 1), n (n = 0), n Scale Role
They give you information and time to digest it. (ID 73, passive)
Categories Identified From Patient Responses (n = 134)
a total of 134 statements that were organized under the same 10 categories that were identified during the content analyses of barriers to participation. The categories identified for the analyses of patient responses to ‘‘What do you believe made it easier to participate in your own care in the past 24 hours?’’ are presented in Table 5. Similar to patient perceptions of what made it difficult to participate, information and time were both discussed and linked to making participation in care easier:
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Doctors are not going to suggest something that is bad for me. (ID 105, passive) Nurses and doctors are the experts. For example, you report nausea, and they sort out something to give you. (ID 30, passive shared) Participating in care was for some patients made easier by the presence of a significant other to hear the information and help in remembering that information (memory) as well as to assist in decision making: Good communication. Having my partner with me makes it easier to remember. (ID 144, passive shared) Having a second pair of ears, understanding what is being said, and having time to process it. (ID 150, passive shared) My familyVI have 1 daughter who is a nurse and 1 daughter who is a pharmacist. They understand things better and more thoroughly than me. I also can’t remember everything. I wouldn’t be able to make decisions without them. (ID 64, active) Finally, patients expressed ‘‘knowing the system’’ (system/ environment) as making it easier to participate: Getting used to the hospital system, I’m now far more demanding. Being given time to ask questions and not to be rushed for time. The ward is the hardest part because you encounter so many young ones [patient was referring to nursing staff]. (ID 91, active shared) I’ve been here for a month now. I know the system. (ID 114, passive shared).
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Discussion
Patient perceptions of the barriers and facilitators to participation in their symptom management were assessed using open-ended questions that formed part of a larger questionnaire (MultiSymptom Assessment and Participation Questionnaire). The content analyses of patient responses yielded 10 categories: information, time, memory, family, clinician behaviors, patient beliefs, patient behaviors, rapport, symptom burden, and system factors. The same 10 categories were applicable to both the barrier and facilitator data; however, the frequency of responses did vary. Similarities between reported facilitators and barriers to participation have been reported previously.18,34Y37 Patients’ preference for participation was assessed using the CPS. The findings highlighted that patients reported both barriers and facilitators to participation irrespective of their Control Preference. Insufficient information was the most commonly reported barrier to participation, whereas having information was the most reported facilitator. Patients referred to the importance of information in their ability to manage systems and to participate in their care; thus, not having information was also a barrier to participation. Patients reported wanting more information, a factor that is not unique to this study.19,21,38 Indeed, many reported patient behaviors involved asking clinicians for information. Doctors and nurses are not accurate at estimating the amount and type of information patients want or how effective they have been in imparting that information.39 The methods used by clinicians
to communicate information with patients may have implications for patients’ ability to participate. Memory was the second most frequently reported barrier to participation identified. Patient reports of difficulty remembering information are not unique to the current study.39,40 The Information Processing Theory was developed within the field of psychology to describe the process of decision making in terms of gathering information, weighing alternative options, and then making a final judgment.41 An assumption of the theory is bounded rationality.42 This theory claims that only a limited number of bits of information (7 T 2) can be stored and easily retrieved from short-term memory. All other information is stored in long-term memory, which is more difficult to assess. This is likely compounded in patients with cancer who may experience difficulties with memory, attention, and other aspects of cognitive function related to chemotherapy.43 How much information can be processed by patients at any one time is likely to be variable. During clinician-patient interactions, it is necessary to find a balance between underinforming and overloading with information.21 Patients in the current study reported having a family member present during clinical consultations was helpful because they were able to remember information for them. However, in the acute care setting, care is provided 24 hours a day, and it is likely that information is exchanged during each interaction, and there are less formal processes for scheduling consultations so that family members can be present. Time was identified in this study as the third largest barrier to participation and the fourth largest facilitator. Time has previously been identified as a major barrier to symptom assessment and symptom treatment.44,45 These findings highlight that, irrespective of patients’ preference for participation, there were important similarities in the reported barriers and facilitators to the operationalization of participation in the acute care setting that appear to be related to the nature of and the context within which interactions occur during care delivery .
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Conclusion
Patients identified a number of barriers and facilitators to the enactment of patient participation in acute care. These findings have implications for the delivery of patient-centered, safe, quality care. Patients overall perceived information as the most critical component of participation. Patients also identified time, memory, clinician behaviors, patient behaviors, patient beliefs, symptom burden, rapport, and family and system factors to be both barriers and facilitators to patient participation. The findings highlight both person and system factors that impact patients’ ability to participate in their symptom management during an episode of admission to an acute oncology setting, and these barriers and facilitators appear to be independent of patients’ preference for participation. The notion of patient participation as a method of improving the safety and quality of care continues to gain momentum. The common factors identified in this study suggest that patient opportunities to participate may be largely dependent on the care
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practices of individual clinicians. This points to the importance of enhancing both clinician and patients understanding of the patient role in symptom management and providing opportunities for patients to enact this. Additional research is needed to examine whether clinicians’ knowledge of patients’ preference for participation influences the way in which they tailor patients care and provide opportunities for patients to participate.
References
22.
23. 24.
25.
1. Longtin Y, Sax H, Leape LL, Sheridan SE, Donaldson L, Pittet D. Patient participation: current knowledge and applicability to patient safety. Mayo Clin Proc. 2010;85(1):53Y62. 2. Henderson A. Boundaries around the ‘well-informed’ patient: the contribution of Schutz to inform nurses’ interactions. J Clin Nurs. 2006;15(1):4Y10. 3. Sainio C, Lauri S, Eriksson E. Cancer patients’ views and experiences of participation in care and decision making. Nurs Ethics. 2001;8(2):97Y113. 4. Coulter A. After Bristol: putting patients at the centre. Qual Saf Health Care. 2002;11:186Y188. 5. O’Connor AM, Stacey D, Entwistle V, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2003; (2):CD001431. 6. Ruland CM. Improving patient outcomes by including patient preferences in nursing care. Proc AMIA Symp. 1998;448Y452. 7. Kiesler DJ, Auerbach SM. Optimal matches of patient preferences for information, decision-making and interpersonal behavior: evidence, models and interventions. Patient Educ Couns. 2006;61(3):319Y341. 8. Stromgren AS, Groenvold M, Pedersen L, Olsen AK, Spile M, Sjogren P. Does the medical record cover the symptoms experienced by cancer patients receiving palliative care? A comparison of the record and patient self-rating. J Pain Symptom Manage. 2001;21(3):189Y196. 9. Stromgren AS, Groenvold M, Sorensen A, Andersen L. Symptom recognition in advanced cancer. A comparison of nursing records against patient self-rating. Acta Anaesthesiol Scand. 2001;45(9):1080Y1085. 10. Florin J, Ehrenberg A, Ehnfors M. Clinical decision-making: predictors of patient participation in nursing care. J Clin Nurs. 2008;17(21):2935Y2944. 11. Sahlsten MJ, Larsson IE, Plos KA, Lindencrona CS. Hindrance for patient participation in nursing care. Scand J Caring Sci. 2005;19(3):223Y229. 12. Waterworth S, Luker KA. Reluctant collaborators: do patients want to be involved in decisions concerning care? J Adv Nurs. 1990;15(8):971Y976. 13. Biley FC. Some determinants that effect patient participation in decisionmaking about nursing care. J Adv Nurs. 1992;17(4):414Y421. 14. Florin J, Ehrenberg A, Ehnfors M. Patient participation in clinical decisionmaking in nursing: a comparative study of nurses’ and patients’ perceptions. J Clin Nurs. 2006;15(12):1498Y1508. 15. Degner LF, Sloan JA. Decision making during serious illness: what role do patients really want to play? J Clin Epidemiol. 1992;45(9):941Y950. 16. Davison BJ, Goldenberg SL, Gleave ME, Degner LF. Provision of individualized information to men and their partners to facilitate treatment decision making in prostate cancer. Oncol Nurs Forum. 2003;30(1):107Y114. 17. Beaver K, Bogg J, Luker KA. Decision-making role preferences and information needs: a comparison of colorectal and breast cancer. Health Expect. 1999; 2(4):266Y276. 18. Keatinge D, Bellchambers H, Bujack E, Cholowski K, Conway J, Neal P. Communication: principal barrier to nurse-consumer partnerships. Int J Nurs Pract. 2002;8(1):16Y22. 19. Beaver K, Booth K. Information needs and decision-making preferences: comparing findings for gynaecological, breast and colorectal cancer. Eur J Oncol Nurs. 2007;11(5):409Y416. 20. Davison BJ, Goldenberg SL, Wiens KP, Gleave ME. Comparing a generic and individualized information decision support intervention for men newly diagnosed with localized prostate cancer. Cancer Nurs. 2007;30(5):E7YE15. 21. Butow PN, Maclean M, Dunn SM, Tattersall MH, Boyer MJ. The dynamics
26.
27.
28.
29. 30.
31.
32.
33. 34.
35.
36.
37.
38. 39. 40. 41. 42. 43. 44.
45.
of change: cancer patients’ preferences for information, involvement and support. Ann Oncol. 1997;8(9):857Y863. Deber RB, Kraetschmer N, Urowitz S, Sharpe N. Do people want to be autonomous patients? Preferred roles in treatment decision-making in several patient populations. Health Expect. 2007;10(3):248Y258. Arora NK, McHorney CA. Patient preferences for medical decision making: who really wants to participate? Med Care. 2000;38(3):335Y341. Tariman JD, Berry DL, Cochrane B, Doorenbos A, Schepp K. Preferred and actual participation roles during health care decision making in persons with cancer: a systematic review. Ann Oncol. 2010;21(6):1145Y1151. Davison BJ, So AI, Goldenberg SL. Quality of life, sexual function and decisional regret at 1 year after surgical treatment for localized prostate cancer. BJU Int. 2007;100(4):780Y785. Caress AL, Luker K, Woodcock A, Beaver K. A qualitative exploration of treatment decision-making role preference in adult asthma patients. Health Expect. 2002;5(3):223Y235. Wright CC, Barlow JH, Turner AP, Bancroft GV. Self-management training for people with chronic disease: an exploratory study. Br J Health Psychol. 2003;8(pt 4):465Y476. Cadd A, Keatinge D, Henssen M, et al. Assessment and documentation of bowel care management in palliative care: incorporating patient preferences into the care regimen. J Clin Nurs. 2000;9(2):228Y235. Florin J, Ehrenberg A, Ehnfors M. Patient participation in decision making in nursing. Stud Health Technol Inform. 2006;122:54Y57. Hubbard G, Kidd L, Donaghy E. Preferences for involvement in treatment decision making of patients with cancer: a review of the literature. Eur J Oncol Nurs. 2008;12(4):299Y318. Kidd L, Hubbard G, O’Carroll R, Kearney N. Perceived control and involvement in self care in patients with colorectal cancer. J Clin Nurs. 2009;18(16): 2292Y2300. Singh JA, Sloan JA, Atherton PJ, et al. Preferred roles in treatment decision making among patients with cancer: a pooled analysis of studies using the Control Preferences Scale. Am J Manag Care. 2010;16(9):688Y696. Ford S, Schofield T, Hope T. Are patients’ decision-making preferences being met? Health Expect. 2003;6(1):72Y80. Eldh AC, Ehnfors M, Ekman I. The phenomena of participation and nonparticipation in health careVexperiences of patients attending a nurse-led clinic for chronic heart failure. Eur J Cardiovasc Nurs. 2004;3(3):239Y246. Coulter A, Parsons S, Askham J. Where Are the Patients in Decision-Making About Their Own Care? Copenhagen, Denmark: World Health Organisation; 2008. Edwards M, Davies M, Edwards A. What are the external influences on information exchange and shared decision-making in healthcare consultations: a meta-synthesis of the literature. Patient Educ Couns. 2009;75(1):37Y52. Millard L, Hallett C, Luker K. Nurse-patient interaction and decisionmaking in care: patient involvement in community nursing. J Adv Nurs. 2006;55(2):142Y150. Degner LF, Kristjanson LJ, Bowman D, et al. Information needs and decisional preferences in women with breast cancer. JAMA. 1997;277(18):1485Y1492. Epstein RM, Alper BS, Quill TE. Communicating evidence for participatory decision making. JAMA. 2004;291(19):2359Y2366. Whitney SN. A new model of medical decisions: exploring the limits of shared decision making. Med Decis Making. 2003;23(4):275Y280. Newell A, Simon HA. Human Problem Solving. Englewood Cliffs, NJ: Prentice-Hall; 1972. Miller G. The magical number seven, plus or minus two: some limits on our capacity for processing information. Psychol Rev. 1952;63(2):81Y97. Staat K, Segatore M. The phenomenon of chemo brain. Clin J Oncol Nurs. 2005;9(6):713Y721. Gunnarsdottir S, Donovan HS, Ward S. Interventions to overcome clinicianand patient-related barriers to pain management. Nurs Clin North Am. 2003; 38(3):419Y434, v. Von Roenn JH, Cleeland CS, Gonin R, Hatfield AK, Pandya KJ. Physician attitudes and practice in cancer pain management. A survey from the Eastern Cooperative Oncology Group. Ann Intern Med. 1993;119(2):121Y126.
Patient Perceptions of the Barriers and Facilitators to Participation
Cancer NursingTM, Vol. 38, No. 6, 2015
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