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Using Focus Groups to Evaluate the Patient's Involvement in Decision-Making: Associated with Their Vascular Access Device
Using Focus Groups to Evaluate the
Patient's Involvement in Decision-Making Associated with Their Vascular Access Device • • •
Introduction he traditional paternalistic model of medical decisionmaking, in which doctors make decisions on behalf of their patients, increasingly has come to be outdated.' Patient-centered care, patient-focused care or client-centered care describes professional health care interventions targeted at addressing the patient's needs.' Cox3.' proposed the Interaction Model of Client Health Behavior (IMCHB), which proposed that consumers of heald1 care have d1e need to be competent and self-determining in their health outcomes. This model also proposed d1at consumers of health care should be allowed d1e maximal opportunity to choose between intervention alternatives and health behaviors. This model was based upon information sharing and collaboration between the provider of health care and the consumer. Recently, health care practitioners have tried to promote patient autonomy and palticipation in clinical decision-making. This trend is based on the assumption that patient palticipa-
T
Katherine Nugent, RN, PhD Cynthia Chernecky, RN, PhD, AOCN Denise Macklin, RN, BSN, C, CRNI (PI)
tion in decisions has been associated with improved patient outcomes. A model of shared decision-making is based upon the assumption d1at the patient is willing to take part in the decision-making process. A study by Mansell et at. demonstrated that although patients want their physicians to be involved in d1e decisions, almost all patients want at least some personal involvement in decisionmaking for major interventions.; However, other studies show that patients prefer that physicians have most of the control over decisions.6-10 In one study, a focus group methodology was used to determine the cancer patient's point of view concerning palticipation in decision-making." The results indicated that active participation of patients in care decision-making requires an environment that encourages patients to participate in their care. Also this study noted that much more attention has to be given to cancer patient participation in decision-making." Previous studies have demonstrated that the majority of cancer patients fail to achieve their desired level of participation during treatment decision-making."
Summer
Purpose The purpose of this study was to gather information about patient and caregiver preferences, decision-making processes, the information required to make a vascular access device (VAD) choice, and the information needed to care for a VAD. This study was patt of a multi-phase project funded by d1e National Institute of Nursing Research (NINR). The purpose of d1e project was to identify, through quantitative and qualitative means, previous vascular access device experiences from patients and their caregivers.
Methodology The methodology of focus groups was used in this study, since this form of interviewing allows for expansion of data from d1e individual to the group, d1US allowing for exploration of collective interpretations. It also assists the investigator in closing the gap between professionals and the intended audience. The focus group interview is designed to collect information on a
2002
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celtain theme in an open-minded and permissive atmosphere. The aim is to achieve an understanding of the participant's views on the issues. 13 The investigators conducted separate focus groups for patients in three states in the Southeast. Each focus group consisted of no more than ten patients, but had to include at least seven patients. An attempt was made to recruit at least thirteen participants for each focus group site in order to allow for possible absenteeism. The focus groups were held at a time convenient to the patients. Inclusion criteria for the participants were: (l) each patient had a VAD indwelling for a minimum of three months; (2) each were able to talk about their experiences of living with the device; and (3) each were 21 years or older. In addition to the inclusion criteria, a purposive process was used to ensure a representative ethnic and sex composition of patients in the focus groups. American Cancer Society statistics were used to compute the overall cancer rates with respect to ethnicity. The focus group sex and etlmic composition was determined by applying tl1e incidence of cancer for each ethnic group in the total population to a total subject sample size of N=30. This system yielded an ethnic composition of 10 African An1ericans; 8 Caucasians; 6 Hispanics; and 6 Asians. Sex composition also was based upon demographics obtained from the American Cancer Society statistics on overall cancer incidence rate: 50% were male and 50% were female. These individuals varied by VAD, disease state, and other characteristics.
Conducting the focus group Due to the nature of the overall study, structured interview questions were used. Group sessions were held for a minimum of one hour and a maximum of two hours. Each session was audio taped so tl1at verbatim data would be available for analysis. In
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addition, each session was videotaped in order to provide credibility to the investigator's interpretation of the participants' responses. The following questions were asked in the focus groups. • How did you decide which VAD you would use during your course of treatment? • What issues do you consider important when you are choosing a VAD? • Who taught you how to care and maintain the device? • What things did you learn? • What didn't you learn then that you know would be helpful to know now? • Do you feel qualified to handle problems with the VAD? • What things do you do to insure that the VAD is maintained and always functional? • How has having the VAD changed your life? • What do you do differently now tl1an you did before having tl1e VAD inserted? • Are there things that you cannot do, or choose not to do because of the VAD? • Have you ever had any complications as a result of your venous access device? • When you have made important health care decisions, what issues have you considered? • What educational information do you think would be helpful for us to place onto a computer for patients and caregivers regarding venous access device? • Is there anything else you want to share with us?
Analysis Responses were typed verbatim and then analyzed to determine repeated concepts in answering each question. This was done through word comparison, context of comments, emphasis or intensity, and consistency of meaning. 13 These concepts were further analyzed to determine themes evolving from each question. A final level of analysis
2 0 0 2
was done to determine if themes evolved into an over-riding concept or tl1eme. Videotapes of the focus groups were used to validate transcriptions and emphasis of words and intensity.
Findings How did you decide which VAD you would use? When participants were asked how tl1ey decided which VAD to use during tl1eir course of treatment, tl1eir response was the same: tl1ey had no choice as to the type of VAD used. Consistently, it was the physician who told tl1em that he/she would be getting the VAD. TI1e non-verbal response to this question was also consistent across focus groups: curious expression of almost disbelief that they would have had a choice, smiles, shaking of heads agreeing with responses of "no choice." Overwhelmingly, participants stated that they agreed with the physician'S recommendation for a VAD. They also indicated that the reason the physician recommended tl1e VAD was to make it easier for them to receive tl1e chemotherapy and to have their blood drawn. In general, participants did not know that more tl1an one type of VAD existed. What issues do you consider important when choosing a VAD? Altl10ugh participants stated that they had no choice in the type of VAD, tl1ey were able to identify what they believed should be considered in making such a choice: • If there were a risk of infection with the type of VAD; • If tl1e patient had any existing physiological problems; • How frequently the VAD need to be accessed; • The duration of treatment; • How convenient tl1e VAD was in relation to activities of daily living; • The number of complications associated with tl1e VAD; • The amount and type of care required; • The availability of a caregiver; • Location of placement; and • Body image.
These considerations were articulated across all the focus groups.
tion or felt confused about d1e information. Participants indicated they wanted to know more detail about VADs, such as how they functioned, how long they remained inserted, and how they were implanted in the body. They indicated that they wanted to know d1e protocol of care and why it seemed to differ from patient to patient. They felt it would be helpful if they knew more about the different complications possible, such as signs and symptoms of infection, bloods clots and collateral veins.
Who taught you to care for and maintain tbe VAD? Across all focus groups, most of the participants felt that no one had instructed them on how to care for or maintain the VAD. This theme became apparent to the participants as they engaged in discussion with each other concerning their experiences with visits to the clinic and with their VAD. The majority of the participants who had received instruction received it from the nurse in the clinic. A few of d1e partici- Do you feel qualified to handle pants expressed that they found out problems? information by talking with other The majority of the participants were patients or indirecdy by observing d1e not confident in their ability to handle care and/or interaction between d1e problems wid1 or to care for their VAD. professional caregiver and other The lack of confidence was related to patients. Two distinct feelings emerged the fact d1at they did not do d1eir own wid1 d1e discussion. Some participants care and they felt they did not have the were annoyed that d1ey had not knowledge needed. Consistendy, palticreceived any instructions, while others ipants stated they went to d1e clinic for indicated d1ey were not concerned that maintenance care. Participants did they had not received any instructions express dut d1ey felt confident that they because d1ey were not doing their own knew when to seek help. Participants who did express conficare and had no intention of doing it. dence in their ability to care for their What tbings did you learn? VAD had been caregivers for other GeneralJy, the participants learned the people who had VADs or they had protocol associated wid1 administering other medical problems requiring permedications and flushing of d1eir formance of treatments. catheter, and when to come to d1e clinic to receive maintenance care. Others What tbings do you do to ensure indicated that they learned how to clean that tbe VAD is maintained and and dress the insertion site, the impor- always functional? tance of protecting d1e site from injury Almost all of the participants stated and from getting wet, and to recognize that d1ey did nothing to maintain their whed1er d1e site becarne infected. Some VAD or to be sure it was functional. indicated that d1ey had received instruc- They did indicate that they went to the tions on taking an anticoagulant, such clinic at regular intervals and the as Coumadin. An impoltant theme nurses maintained their VAD, espeevolved in that most of those in the cially while they were receiving treatfocus groups indicated d1at the informa- ments. After the treatments had ended, tion they had learned came from expe- the participants expressed uncertainty rience and not from formal teaching. about what maintenance care needed to be done or how often they should What didn't you learn then that go to the clinic. you know would be helpful to know now? How has baving tbe VAD cbanged In answering this question, it your life? When palticipants were asked how became obvious that participants identified those things d1ey heard others having the VAD changed their life, it mention in the earlier question, but in was clearly evident that they had a difwhich they had received no instruc- ficult time separating the changes in
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their life due to the cancer or chemod1erapy agent from the changes due to the presence of the VAD. However, d1e participants were very vocal that the major impact of d1e VAD was positive in dut it made d1e administration of chemotherapy and d1e withdrawing of blood samples a better experience. The fact that the VAD made receiving treatment less threatening overshadowed any other changes that might have been made in other aspects of their life, ald10ugh some of the participants reported that haVing d1e VAD made d1em more cautious in doing activities of daily living. What tbings were different after tbe insertion of VAD? As with the previous questions concerning how their life had changed, most of the participants did not feel that they do anything different now than they did before having the VAD inserted. Things that were identified included activities of daily liVing, such as changing d1e style of clod1ing or the manner of bathing or the position of sleeping. Are there things that you cannot do, or cboose not to do because of the VAD? Although participants had already answered two questions d1at related to the VAD changing d1eir life or doing tl1ings differently by stating that there was no difference, d1eir answers to d1is question were slightly different. A few of d1e participants indicated tl1ey had changed jobs and given up different type of sports; however, it was difficult to detern1ine whether the things they chose not to do were related exclusively to the VAD or if it was a combination of d1e VAD, their disease state, and the chemotherapy treatment.
Complications Approximately one-third of the participants identified d1e following complications associated with their VAD: infection, blood clots, tape allergy, displaced catheter, and occlusion of the cannula. Only a few participants stated that they had had more than one VAD placed.
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When you have made important healthcare decisions, what issues have you considered? It was difficult for participants to identify what issues were considered when making important health care decisions. igain, the fact that they relied heavily upon their physicians in making decisions was communicated. Even though they relied heavily on advice from physicians, many expressed disappointment with decisions, lack of information or felt that the physician had not acknowledged their preferences in care. Many panicipants indicated dut dley discussed health care decisions widl their family; however, more attention was paid to physicians than to family members. Others stated that dley based decisions on financial matters, such as insurance coverage, dle ability to work or get a job, and the financial drain on the rest of the family. Some of the participants expressed that healdl care decisions were made based on how the condition affected the family economically, family demands for care and their ability to cany out their responsibility in caring for their family. Prayer was a major factor identified in decision-making, especially by the Hispanic and African American paJticipants. Should educational information be placed on the Internet? When asked what educational information they thought would be helpful to place on a computer for patients and caregivers regarding VADs, the patticipants responded based upon categories in whidl they felt that dley had not received information, such as possible complications, medications to be delivered, financial aid and insurance information, resources available, and maintenance and care procedures. They indicated that enough information needed to be included so that patients could make "good" decisions about their VADs. Specific information needs to be included on functioning and placement of dle VAD as well as dle types and the pros and cons associated with each type of VAD. Some of the participants felt that including personal experiences or tes-
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timonials would help people who were considering having VADs placed. A predominant theme was to tell patients to get a VAD because it made such a difference in the experience of the treatment.
Other comments from the focus groups When asked if there was anything else dlat participants wanted to share widl us, the predominant theme was the impOltance of taking care of their health, paying attention to their body, and haVing a positive attitude. One PaJ°ticipant stated dlat in the future patients should not to be afraid to ask questions or to let dle physician know when he/she does not understand the infor-
mation provided. Again, a predominant dleme was how great dle VAD was and to tell people to have one inselted.
Conclusion The purpose of this study was to gadler information about patient and caregiver preferences for VADs, decision-making processes employed, the information required to make a VAD choice and information needed to care for a VAD. Rich data were gathered from each of the VAD focus groups, widl dle patticipants readily shaling their expeliences so dut others would have enough information to make informed decisions associated widl VADs. Peltinent themes emerged from each interview question and, in the final
Questions asked of the focus group members: • How did you decide which VAD you would use during your course of treatment? • What issues do you consider important when choosing aVAD? • Who taught you how to care and maintain the VAD? • What things did you learn about caring for the VAD while it was indwelling? • What did you not learn while the VAD was indwelling that you now know would have been helpful? • Do you feel qualified to handle problems with the VAD? • What things do you do differently now than you did before having the VAD indwelling? • Are there things that you cannot do, or choose not to do, because the VAD is indwelling? • Have you ever had any complications as a result of the VAD? • When you have made important healthcare decisions, what issues have you considered? • What educational information do you think would be helpful for us to place onto a computer for patients and caregivers regarding VADs? • Is there anything else that you want to share with us?
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analysis of the data, an overriding theme of a lack of a shared decisionmaking model emerged. Similar to the results noted in the study conducted by Sainio et al.," the concept of being involved in decision-making was alien to these participants. The participants reported very limited input into decisions about their VAD, if any. Moreover, the participants consistently indicated that they did not have the information needed to participate in making decisions associated witll their VAD. PaJticipants consistently validated that they had no input into the type of VAD and many stated that they had little input into tlle treatment plan. The findings of this study SUppOlt other studies8-1O in tllat a majority of the patients were comfortable with leaving medical decisions to their physician. However, the palticipants also voiced their desire to be a pallier in making healthcare decisions, but felt hindered by tlle lack of information provided. Clinical literature has supported the idea iliat keeping tlle patient informed is one of tlle important characteristics of participative decision-making, and yet tllese participants expressed frustration concerning tlleir perception of inconsistent patient teaching. In reality, they expressed tllat they gained most of tlleir
information either from sharing experiences with otller patients or observing tlle care provided to otller patients. The results of tllis study suppon the implementation of a palticipative decision-making model in the care of patients who have VAD placed. Shared decision-making assumes that tlle patient has an active involvement in tlle decisions associated witll tlle management of care. Charles, Gafni, and Whelan" argue that the follOWing four key characteristics must be evident in a shared decision-making model: (l) botll tlle patient and the doctor are involved, (2) both panies share information, (3) both panies take steps to build a consensus about tlle preferred treatment, and (4) an agreement is reached as to tlle treatment to inlplement. Healthcare providers need to continue to include patients in decisionmaking, especially for severe illness and decisions about major interventions. Although patients indicate tllat they want their physicians to be involved in the decisions, tlley also indicate the need to be involved and to have enough information to evaluate their care. Continued research addressing shared decision-making models is needed, especially in tlle aJ'ea of evaluation of inlplemented models. •
NOTE: This research was supported by me NINR, grant number NR051218-01. Katberine Nugent, RN, PbD, is Professor of Parent-Cbild Nursing and tbe Associate Dean for Academic Programs in the School ofNursing at the Medical College of Georgia. ReI' research expertise is in qualitative focus groups, and she has published extensively in the area ofeducation. Cynthia Cbemecky, RN, PhD, AOCN is an Associate Professor in the School of Nursing, Department of Adult Realtb, at tbe Medical College of Georgia. Sbe bas two programs of research focused on lung cancer and venous access devices, is responsible for the acute and critical cm"e graduate master's nursing track, and is an ex-officio ofthe critical care special interest group oftbe Oncology Nursing Society. Denise Macklin, RN, BSN, C, CRN! (PI), is President and foundei" of Professional Leaming Systems (PLS) Inc. in Marietta, Georgia. She is certtfied in IV Therapy and Adult/Stcif.!education and her work includes production of training videos for vascular access and interactive programs for medical manz,ifacturers and the CDG. She is founder and editor of www.ceuzone.com an online nursing contin.uing education Intemet site.
REFERENCES 1. Stevens F, BatTy C, Britten N, Barber N, Bradley C. Doctor-patient communication about drugs: the evidence for shared decision making. Sac Sci Med 2000; 50: 829-840 2. Cox C. Response to "Patient-Centered Care: Understanding its interpretation and implementation in health care. Scholarly Inquiry for Nursing Practice 2000; 14 (2) 83-186. 3. Cox C. An interaction model of client health behavior: Theoretical prescription for nursing. Advan Nurs Science 1982; 5: 41-56 4. Cox C. The health self-determination index. Nurs Res 1985; 34: 177-183. 5. Mansell D, Poses R, Kazis L, Duefield A. Clinical factors that influence patients' desire for participation in decisions about iUness. Arch Intern Med
2000; 160 (l9) 2991-6. 6. Ende], Kazie L, Moskowitz M. Measuring patients' desi.re for autonomy: decision making and i.nformation-seeking preferences among medical patients. ] Gen Intern Med 1989; 4: 23-30. 7. Ende], Kazie L, Moskowita M. Preferences for autonomy when patients are physicians. ] Gen Intern Med 1990; 5: 506-509. 8. Nease RF, Brooks W. Patient desire for information and decision making in health care decisions: the autonomy preference index and the health opinion survey. ] Gen Intern Med 1995; 10: 593-600. 9. Bradley], Zia M, Hamiliton N. Patient preferences for control in medical decision making: a scenario-based approadl. Family Med 1996; 28: 496-501.
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10. Mora N, McHorney C. Patient preferences for medical decision making: Who really wants to palticipate? Medical Cam 2000; 38 (3) 335-341. 11. Sainio C, Erkisson E. Lauri S. Patient palticipation in decision makirIg about care: The cancer patient'S point of view. Cancer NU1'Sing 2001; 24 (3) 172178 12. Garrellari M, Butow P, Tattersall M. Sharing decisions in cancer care. Sac Sci Med 2001; 52: 1865-1878. 13. Krueger R. Analyzing and reporting focus group result (focus group kit 6). Thousand Oaks, CA: Sage 1998. 14. Gafni C, Whelan T, Sharen decisionmaking in the medical encowlter: what does it mean? (or it takes at least two to tango.) Sac Sci Med 1997; 44: 681-692.
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Patient's Involvement in Decision-Making Associated with Their Vascular Access Device • • •
Introduction he traditional paternalistic model of medical decisionmaking, in which doctors make decisions on behalf of their patients, increasingly has come to be outdated.' Patient-centered care, patient-focused care or client-centered care describes professional health care interventions targeted at addressing the patient's needs.' Cox3.' proposed the Interaction Model of Client Health Behavior (IMCHB), which proposed that consumers of heald1 care have d1e need to be competent and self-determining in their health outcomes. This model also proposed d1at consumers of health care should be allowed d1e maximal opportunity to choose between intervention alternatives and health behaviors. This model was based upon information sharing and collaboration between the provider of health care and the consumer. Recently, health care practitioners have tried to promote patient autonomy and palticipation in clinical decision-making. This trend is based on the assumption that patient palticipa-
T
Katherine Nugent, RN, PhD Cynthia Chernecky, RN, PhD, AOCN Denise Macklin, RN, BSN, C, CRNI (PI)
tion in decisions has been associated with improved patient outcomes. A model of shared decision-making is based upon the assumption d1at the patient is willing to take part in the decision-making process. A study by Mansell et at. demonstrated that although patients want their physicians to be involved in d1e decisions, almost all patients want at least some personal involvement in decisionmaking for major interventions.; However, other studies show that patients prefer that physicians have most of the control over decisions.6-10 In one study, a focus group methodology was used to determine the cancer patient's point of view concerning palticipation in decision-making." The results indicated that active participation of patients in care decision-making requires an environment that encourages patients to participate in their care. Also this study noted that much more attention has to be given to cancer patient participation in decision-making." Previous studies have demonstrated that the majority of cancer patients fail to achieve their desired level of participation during treatment decision-making."
Summer
Purpose The purpose of this study was to gather information about patient and caregiver preferences, decision-making processes, the information required to make a vascular access device (VAD) choice, and the information needed to care for a VAD. This study was patt of a multi-phase project funded by d1e National Institute of Nursing Research (NINR). The purpose of d1e project was to identify, through quantitative and qualitative means, previous vascular access device experiences from patients and their caregivers.
Methodology The methodology of focus groups was used in this study, since this form of interviewing allows for expansion of data from d1e individual to the group, d1US allowing for exploration of collective interpretations. It also assists the investigator in closing the gap between professionals and the intended audience. The focus group interview is designed to collect information on a
2002
.JVAD
33
celtain theme in an open-minded and permissive atmosphere. The aim is to achieve an understanding of the participant's views on the issues. 13 The investigators conducted separate focus groups for patients in three states in the Southeast. Each focus group consisted of no more than ten patients, but had to include at least seven patients. An attempt was made to recruit at least thirteen participants for each focus group site in order to allow for possible absenteeism. The focus groups were held at a time convenient to the patients. Inclusion criteria for the participants were: (l) each patient had a VAD indwelling for a minimum of three months; (2) each were able to talk about their experiences of living with the device; and (3) each were 21 years or older. In addition to the inclusion criteria, a purposive process was used to ensure a representative ethnic and sex composition of patients in the focus groups. American Cancer Society statistics were used to compute the overall cancer rates with respect to ethnicity. The focus group sex and etlmic composition was determined by applying tl1e incidence of cancer for each ethnic group in the total population to a total subject sample size of N=30. This system yielded an ethnic composition of 10 African An1ericans; 8 Caucasians; 6 Hispanics; and 6 Asians. Sex composition also was based upon demographics obtained from the American Cancer Society statistics on overall cancer incidence rate: 50% were male and 50% were female. These individuals varied by VAD, disease state, and other characteristics.
Conducting the focus group Due to the nature of the overall study, structured interview questions were used. Group sessions were held for a minimum of one hour and a maximum of two hours. Each session was audio taped so tl1at verbatim data would be available for analysis. In
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addition, each session was videotaped in order to provide credibility to the investigator's interpretation of the participants' responses. The following questions were asked in the focus groups. • How did you decide which VAD you would use during your course of treatment? • What issues do you consider important when you are choosing a VAD? • Who taught you how to care and maintain the device? • What things did you learn? • What didn't you learn then that you know would be helpful to know now? • Do you feel qualified to handle problems with the VAD? • What things do you do to insure that the VAD is maintained and always functional? • How has having the VAD changed your life? • What do you do differently now tl1an you did before having tl1e VAD inserted? • Are there things that you cannot do, or choose not to do because of the VAD? • Have you ever had any complications as a result of your venous access device? • When you have made important health care decisions, what issues have you considered? • What educational information do you think would be helpful for us to place onto a computer for patients and caregivers regarding venous access device? • Is there anything else you want to share with us?
Analysis Responses were typed verbatim and then analyzed to determine repeated concepts in answering each question. This was done through word comparison, context of comments, emphasis or intensity, and consistency of meaning. 13 These concepts were further analyzed to determine themes evolving from each question. A final level of analysis
2 0 0 2
was done to determine if themes evolved into an over-riding concept or tl1eme. Videotapes of the focus groups were used to validate transcriptions and emphasis of words and intensity.
Findings How did you decide which VAD you would use? When participants were asked how tl1ey decided which VAD to use during tl1eir course of treatment, tl1eir response was the same: tl1ey had no choice as to the type of VAD used. Consistently, it was the physician who told tl1em that he/she would be getting the VAD. TI1e non-verbal response to this question was also consistent across focus groups: curious expression of almost disbelief that they would have had a choice, smiles, shaking of heads agreeing with responses of "no choice." Overwhelmingly, participants stated that they agreed with the physician'S recommendation for a VAD. They also indicated that the reason the physician recommended tl1e VAD was to make it easier for them to receive tl1e chemotherapy and to have their blood drawn. In general, participants did not know that more tl1an one type of VAD existed. What issues do you consider important when choosing a VAD? Altl10ugh participants stated that they had no choice in the type of VAD, tl1ey were able to identify what they believed should be considered in making such a choice: • If there were a risk of infection with the type of VAD; • If tl1e patient had any existing physiological problems; • How frequently the VAD need to be accessed; • The duration of treatment; • How convenient tl1e VAD was in relation to activities of daily living; • The number of complications associated with tl1e VAD; • The amount and type of care required; • The availability of a caregiver; • Location of placement; and • Body image.
These considerations were articulated across all the focus groups.
tion or felt confused about d1e information. Participants indicated they wanted to know more detail about VADs, such as how they functioned, how long they remained inserted, and how they were implanted in the body. They indicated that they wanted to know d1e protocol of care and why it seemed to differ from patient to patient. They felt it would be helpful if they knew more about the different complications possible, such as signs and symptoms of infection, bloods clots and collateral veins.
Who taught you to care for and maintain tbe VAD? Across all focus groups, most of the participants felt that no one had instructed them on how to care for or maintain the VAD. This theme became apparent to the participants as they engaged in discussion with each other concerning their experiences with visits to the clinic and with their VAD. The majority of the participants who had received instruction received it from the nurse in the clinic. A few of d1e partici- Do you feel qualified to handle pants expressed that they found out problems? information by talking with other The majority of the participants were patients or indirecdy by observing d1e not confident in their ability to handle care and/or interaction between d1e problems wid1 or to care for their VAD. professional caregiver and other The lack of confidence was related to patients. Two distinct feelings emerged the fact d1at they did not do d1eir own wid1 d1e discussion. Some participants care and they felt they did not have the were annoyed that d1ey had not knowledge needed. Consistendy, palticreceived any instructions, while others ipants stated they went to d1e clinic for indicated d1ey were not concerned that maintenance care. Participants did they had not received any instructions express dut d1ey felt confident that they because d1ey were not doing their own knew when to seek help. Participants who did express conficare and had no intention of doing it. dence in their ability to care for their What tbings did you learn? VAD had been caregivers for other GeneralJy, the participants learned the people who had VADs or they had protocol associated wid1 administering other medical problems requiring permedications and flushing of d1eir formance of treatments. catheter, and when to come to d1e clinic to receive maintenance care. Others What tbings do you do to ensure indicated that they learned how to clean that tbe VAD is maintained and and dress the insertion site, the impor- always functional? tance of protecting d1e site from injury Almost all of the participants stated and from getting wet, and to recognize that d1ey did nothing to maintain their whed1er d1e site becarne infected. Some VAD or to be sure it was functional. indicated that d1ey had received instruc- They did indicate that they went to the tions on taking an anticoagulant, such clinic at regular intervals and the as Coumadin. An impoltant theme nurses maintained their VAD, espeevolved in that most of those in the cially while they were receiving treatfocus groups indicated d1at the informa- ments. After the treatments had ended, tion they had learned came from expe- the participants expressed uncertainty rience and not from formal teaching. about what maintenance care needed to be done or how often they should What didn't you learn then that go to the clinic. you know would be helpful to know now? How has baving tbe VAD cbanged In answering this question, it your life? When palticipants were asked how became obvious that participants identified those things d1ey heard others having the VAD changed their life, it mention in the earlier question, but in was clearly evident that they had a difwhich they had received no instruc- ficult time separating the changes in
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their life due to the cancer or chemod1erapy agent from the changes due to the presence of the VAD. However, d1e participants were very vocal that the major impact of d1e VAD was positive in dut it made d1e administration of chemotherapy and d1e withdrawing of blood samples a better experience. The fact that the VAD made receiving treatment less threatening overshadowed any other changes that might have been made in other aspects of their life, ald10ugh some of the participants reported that haVing d1e VAD made d1em more cautious in doing activities of daily living. What tbings were different after tbe insertion of VAD? As with the previous questions concerning how their life had changed, most of the participants did not feel that they do anything different now than they did before having the VAD inserted. Things that were identified included activities of daily liVing, such as changing d1e style of clod1ing or the manner of bathing or the position of sleeping. Are there things that you cannot do, or cboose not to do because of the VAD? Although participants had already answered two questions d1at related to the VAD changing d1eir life or doing tl1ings differently by stating that there was no difference, d1eir answers to d1is question were slightly different. A few of d1e participants indicated tl1ey had changed jobs and given up different type of sports; however, it was difficult to detern1ine whether the things they chose not to do were related exclusively to the VAD or if it was a combination of d1e VAD, their disease state, and the chemotherapy treatment.
Complications Approximately one-third of the participants identified d1e following complications associated with their VAD: infection, blood clots, tape allergy, displaced catheter, and occlusion of the cannula. Only a few participants stated that they had had more than one VAD placed.
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When you have made important healthcare decisions, what issues have you considered? It was difficult for participants to identify what issues were considered when making important health care decisions. igain, the fact that they relied heavily upon their physicians in making decisions was communicated. Even though they relied heavily on advice from physicians, many expressed disappointment with decisions, lack of information or felt that the physician had not acknowledged their preferences in care. Many panicipants indicated dut dley discussed health care decisions widl their family; however, more attention was paid to physicians than to family members. Others stated that dley based decisions on financial matters, such as insurance coverage, dle ability to work or get a job, and the financial drain on the rest of the family. Some of the participants expressed that healdl care decisions were made based on how the condition affected the family economically, family demands for care and their ability to cany out their responsibility in caring for their family. Prayer was a major factor identified in decision-making, especially by the Hispanic and African American paJticipants. Should educational information be placed on the Internet? When asked what educational information they thought would be helpful to place on a computer for patients and caregivers regarding VADs, the patticipants responded based upon categories in whidl they felt that dley had not received information, such as possible complications, medications to be delivered, financial aid and insurance information, resources available, and maintenance and care procedures. They indicated that enough information needed to be included so that patients could make "good" decisions about their VADs. Specific information needs to be included on functioning and placement of dle VAD as well as dle types and the pros and cons associated with each type of VAD. Some of the participants felt that including personal experiences or tes-
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timonials would help people who were considering having VADs placed. A predominant theme was to tell patients to get a VAD because it made such a difference in the experience of the treatment.
Other comments from the focus groups When asked if there was anything else dlat participants wanted to share widl us, the predominant theme was the impOltance of taking care of their health, paying attention to their body, and haVing a positive attitude. One PaJ°ticipant stated dlat in the future patients should not to be afraid to ask questions or to let dle physician know when he/she does not understand the infor-
mation provided. Again, a predominant dleme was how great dle VAD was and to tell people to have one inselted.
Conclusion The purpose of this study was to gadler information about patient and caregiver preferences for VADs, decision-making processes employed, the information required to make a VAD choice and information needed to care for a VAD. Rich data were gathered from each of the VAD focus groups, widl dle patticipants readily shaling their expeliences so dut others would have enough information to make informed decisions associated widl VADs. Peltinent themes emerged from each interview question and, in the final
Questions asked of the focus group members: • How did you decide which VAD you would use during your course of treatment? • What issues do you consider important when choosing aVAD? • Who taught you how to care and maintain the VAD? • What things did you learn about caring for the VAD while it was indwelling? • What did you not learn while the VAD was indwelling that you now know would have been helpful? • Do you feel qualified to handle problems with the VAD? • What things do you do differently now than you did before having the VAD indwelling? • Are there things that you cannot do, or choose not to do, because the VAD is indwelling? • Have you ever had any complications as a result of the VAD? • When you have made important healthcare decisions, what issues have you considered? • What educational information do you think would be helpful for us to place onto a computer for patients and caregivers regarding VADs? • Is there anything else that you want to share with us?
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analysis of the data, an overriding theme of a lack of a shared decisionmaking model emerged. Similar to the results noted in the study conducted by Sainio et al.," the concept of being involved in decision-making was alien to these participants. The participants reported very limited input into decisions about their VAD, if any. Moreover, the participants consistently indicated that they did not have the information needed to participate in making decisions associated witll their VAD. PaJticipants consistently validated that they had no input into the type of VAD and many stated that they had little input into tlle treatment plan. The findings of this study SUppOlt other studies8-1O in tllat a majority of the patients were comfortable with leaving medical decisions to their physician. However, the palticipants also voiced their desire to be a pallier in making healthcare decisions, but felt hindered by tlle lack of information provided. Clinical literature has supported the idea iliat keeping tlle patient informed is one of tlle important characteristics of participative decision-making, and yet tllese participants expressed frustration concerning tlleir perception of inconsistent patient teaching. In reality, they expressed tllat they gained most of tlleir
information either from sharing experiences with otller patients or observing tlle care provided to otller patients. The results of tllis study suppon the implementation of a palticipative decision-making model in the care of patients who have VAD placed. Shared decision-making assumes that tlle patient has an active involvement in tlle decisions associated witll tlle management of care. Charles, Gafni, and Whelan" argue that the follOWing four key characteristics must be evident in a shared decision-making model: (l) botll tlle patient and the doctor are involved, (2) both panies share information, (3) both panies take steps to build a consensus about tlle preferred treatment, and (4) an agreement is reached as to tlle treatment to inlplement. Healthcare providers need to continue to include patients in decisionmaking, especially for severe illness and decisions about major interventions. Although patients indicate tllat they want their physicians to be involved in the decisions, tlley also indicate the need to be involved and to have enough information to evaluate their care. Continued research addressing shared decision-making models is needed, especially in tlle aJ'ea of evaluation of inlplemented models. •
NOTE: This research was supported by me NINR, grant number NR051218-01. Katberine Nugent, RN, PbD, is Professor of Parent-Cbild Nursing and tbe Associate Dean for Academic Programs in the School ofNursing at the Medical College of Georgia. ReI' research expertise is in qualitative focus groups, and she has published extensively in the area ofeducation. Cynthia Cbemecky, RN, PhD, AOCN is an Associate Professor in the School of Nursing, Department of Adult Realtb, at tbe Medical College of Georgia. Sbe bas two programs of research focused on lung cancer and venous access devices, is responsible for the acute and critical cm"e graduate master's nursing track, and is an ex-officio ofthe critical care special interest group oftbe Oncology Nursing Society. Denise Macklin, RN, BSN, C, CRN! (PI), is President and foundei" of Professional Leaming Systems (PLS) Inc. in Marietta, Georgia. She is certtfied in IV Therapy and Adult/Stcif.!education and her work includes production of training videos for vascular access and interactive programs for medical manz,ifacturers and the CDG. She is founder and editor of www.ceuzone.com an online nursing contin.uing education Intemet site.
REFERENCES 1. Stevens F, BatTy C, Britten N, Barber N, Bradley C. Doctor-patient communication about drugs: the evidence for shared decision making. Sac Sci Med 2000; 50: 829-840 2. Cox C. Response to "Patient-Centered Care: Understanding its interpretation and implementation in health care. Scholarly Inquiry for Nursing Practice 2000; 14 (2) 83-186. 3. Cox C. An interaction model of client health behavior: Theoretical prescription for nursing. Advan Nurs Science 1982; 5: 41-56 4. Cox C. The health self-determination index. Nurs Res 1985; 34: 177-183. 5. Mansell D, Poses R, Kazis L, Duefield A. Clinical factors that influence patients' desire for participation in decisions about iUness. Arch Intern Med
2000; 160 (l9) 2991-6. 6. Ende], Kazie L, Moskowitz M. Measuring patients' desi.re for autonomy: decision making and i.nformation-seeking preferences among medical patients. ] Gen Intern Med 1989; 4: 23-30. 7. Ende], Kazie L, Moskowita M. Preferences for autonomy when patients are physicians. ] Gen Intern Med 1990; 5: 506-509. 8. Nease RF, Brooks W. Patient desire for information and decision making in health care decisions: the autonomy preference index and the health opinion survey. ] Gen Intern Med 1995; 10: 593-600. 9. Bradley], Zia M, Hamiliton N. Patient preferences for control in medical decision making: a scenario-based approadl. Family Med 1996; 28: 496-501.
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10. Mora N, McHorney C. Patient preferences for medical decision making: Who really wants to palticipate? Medical Cam 2000; 38 (3) 335-341. 11. Sainio C, Erkisson E. Lauri S. Patient palticipation in decision makirIg about care: The cancer patient'S point of view. Cancer NU1'Sing 2001; 24 (3) 172178 12. Garrellari M, Butow P, Tattersall M. Sharing decisions in cancer care. Sac Sci Med 2001; 52: 1865-1878. 13. Krueger R. Analyzing and reporting focus group result (focus group kit 6). Thousand Oaks, CA: Sage 1998. 14. Gafni C, Whelan T, Sharen decisionmaking in the medical encowlter: what does it mean? (or it takes at least two to tango.) Sac Sci Med 1997; 44: 681-692.
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