Role of the Nurse Specialist in Caring~Web©
Role of the Nurse Specialist in Caring~Web©
Govoni A. L., Pierce, L. L., Steiner, V. (February 2003). Role of the Nurse Specialist in Caring~Web©. Online Journal of Nursing Informatics (OJNI). Vol. 7, No. 1. [Online]. Available at http://ojni.org/7_1/caringweb.htm
The Internet and the World
Wide Web make it easier for people dealing with illness and chronic disease,
such as stroke, to obtain educational information and support. Approximately 1
million adults in the
Key Words: Internet, Stroke, Caregivers, Education,
Role of the Nurse Specialist in Caring~Web©
The Internet is one medium for the delivery of nursing care and reaching individuals dealing with illnesses and chronic diseases. Living with a chronic disease, such as stroke, is a demanding experience for not only the survivors of stroke, but their caregivers, family members and friends. A large expenditure of energy in dealing with stroke on a day-to-day basis is required to maintain health and emotional stability, while fulfilling family and social roles. The purpose of this article is to provide a description of the support and education role of the Nurse Specialist on the Caring~Web©, a Web-based, in-home support intervention for caregivers dealing with stroke.
Rapid advances in telecommunications
and computer technology have changed the way that people in the
Healthcare information is one of the reasons that people use the
Internet. The current emphasis on early discharge and the movement of care from
in-patient settings to the home mandates the development of electronic
information systems to augment and extend services (Brennan, et al., 2001).
Cohen and Boyd (2001) reported that older adults’ average Internet time each
day is 130 minutes and that one of the things that they search most frequently
for is healthcare information. According to Paietta (2000), there is a variety
of life event information available on the Internet, such as illnesses, caring
for an older parent, bereavement, and death. People, old and young, often
search for answers to questions about their health problems and treatment
options (Leaffer, & Gonda, 2000;
The Internet has healthcare applications beyond information searches. In recent years, traditional face-to-face support groups facilitated by nurses and other professionals have been used extensively with positive outcomes for persons and their family members dealing with chronic diseases and long-term illnesses (Broadhead & Kaplan, 1991). Today, Web-based support groups are gaining credibility, as healthcare providers, including nurses, also manage them and positive outcomes are obtained (Larkin, 2000). Emotional and social support are gained by the participants of these Internet-based groups, in addition to information, such as best treatments, doctors, and medical centers (Veggeberg, 1996). According to White and Dorman (2000) and Northouse and Peters-Golden (1993), members of Internet support groups share experience and opinions such as helping persons cope with body changes and providing encouragement to other members that includes helping persons work through healthcare problems.
The work by White and Dorman (2000) and Bacon, Condon, and Fernsler (2000) serve as examples of Internet support groups and evidence the growing interest in seeking support on the Internet. As patients seek information and support on the Internet, it is important that health care professionals be involved in this medium and become advocates in order to meet patients’ needs.
White and Dorman (2000) examined the content and themes of 532
messages posted on a public Alzheimer’s disease Web site created by the
Washington University Alzheimer’s
The study conducted by Bacon, et al., (2000) a survey was used to describe an electronic self-help group composed of widows with dependent children (n=21). Members participated by sending messages to the entire group. Weekly meetings were scheduled in a private chat room for live “conversation”. A master’s prepared nurse was a participant, but did not take a leading role or act as a counselor to these women. Major disadvantages expressed by the participants were: lack of physical contact, misunderstandings created by misinterpretation of written words, and time constraints that limited their ability to participate in the group. The following categories of positive comments were defined from the participants’ responses: increased coping ability, developed a sense of family or friendship with the other participants, provided a feeling of support for their situation, benefited from shared information, experienced satisfaction for helping others, and found the on-line group convenient to use (Bacon, et al.).
Overview of Caring~Web©
Seeking information from and using the Internet for support can be a winning combination. The authors, in collaboration with experts from the Center for Creative Instruction (CCI) at a medical college in northwest Ohio, have developed a Web site for caregivers of persons with stroke, called Caring~Web© (Steiner & Pierce, 2002). The authors have years of experience in developing in-person support groups and systems for caregivers, as well as experience with Web-based teaching. Web pages for Caring~Web© were designed that are easy to use by computer novices and older adults.
The Web Site
Caring~Web© can be accessed by any means over the Internet. Currently, only with a username and password are participants allowed onto the secured Caring~Web© site. The username and password has been determined by the researchers and is only known by the research team and the study participants. If study participants do not have their own Internet access, the researchers have provided and trained caregivers how to use MSN WebTV, due to its low cost and ease of learning and use (Microsoft, 1999). A user's guide has been developed by the authors to orient the caregivers to the specific components of the research study, as well as MSN WebTV. The guide includes step-by-step descriptions of how to access and use Caring~Web© and its components, as well as e-mail messages. Pictures or screen grabs are used to illustrate the Web pages and help users follow the directions.
Once caregivers have gained access to Caring~Web©, they can link to and/or participate in its components. The intervention contains multiple components to provide different types of support to assist as many caregivers as possible who have potentially diverse characteristics and needs. The site does contain a disclaimer, stating that the medical information presented on the Web site is meant for general education purposes only. Users are encouraged to contact their healthcare provider for specific medical concerns or treatment.
Ask the Nurse. Caregivers are encouraged to e-mail any question(s) that they may have to the nurse specialist, backed-up by a rehabilitation team of experts, using the Ask the Nurse link at any time during the day or night (24-hours each day). Through Ask the Nurse, caregivers can have their questions regarding their caring experience answered. The nurse specialist has extensive expertise in homecare and rehabilitation settings in maintaining individuals and families in their homes. She is an expert in dealing with caregivers' and family's issues and concerns regarding rehabilitation and recovery from stroke. She answers the caregivers' questions via e-mail (or phone if she feels it is necessary or an emergency) within 24-hours of receiving the message(s). There is also a complete rehabilitation team (i.e. physician, social worker, physical therapist, occupational therapist, speech therapist, pharmacist, and dietitian) available to help the nurse specialist respond to complex or discipline specific questions. For example, one caregiver asked about dysphagia and the levels of diets. The nurse specialist contacted the speech therapist and the dietitian in order to obtain a comprehensive and correct answer.
Caretalk. An electronic mailing list was set up for caregivers to talk to others in this study about their caring experiences. The mailing list enables caregivers to send e-mail messages to all participants at once instead of just one individual. Caregivers do not have to join or subscribe to the group like other mailing lists, but are automatically put on the mailing list when they consent to be in the research study. Although it is encouraged, caregivers do not have to participate in the discussions; they can just choose or not choose to read the messages. The nurse specialist is also part of the mailing list and can send messages to the caregivers as well.
Tip of the Month. Educational information
is provided to caregivers in the form of a Tip of the Month. Each month,
a different tip is presented on Caring-Web© that provides
educational information for caregivers. A survey of 49 health care topics was
distributed to nurses in northwest
Using these topics, Tips of the Month were designed to be easy to understand and to encourage online discussion between caregivers and the nurse specialist. Each tip was constructed with large print, an 8th grade reading level or below, graphics or pictures, links to other valid and reliable information Web sites, a link to Caretalk, and a link to Ask the Nurse to encourage the reader to ask specific questions. At the end of each tip current references to textbooks and/or journals are included. The content of each tip was reviewed by experts in the field.
Educational Links. Educational information on a variety of stroke-related issues for survivors of stroke and families/caregivers is also available on Caring~Web© via links to reputable Web sites (e.g. American Stroke Association and National Stroke Association). Links to these sites are checked on a monthly basis to determine if they are still functioning. New, reliable educational sites are added as needed. The nurse specialist may refer caregivers to these web sites for information and encourage them to ask additional questions, if they need clarification on a topic.
Additional Web sites were put on Caring~Web© to stimulate interest and potentially reduce caregiver stress. News Web sites, including the local newspaper and television news channel, the Cable News Network, USA Today, and the Internet Public Library, are provided. Web sites with fun activities, such as card and board games, e-mail cards, information on various hobbies, horoscopes, and jokes, are also included.
Protocols and/or procedures were written to guide the nurse specialist. These include start-up procedures, such as prompt-type messages for responding to new participants and continuing online protocols and routines. These are described in the following section followed by specific examples of both Ask the Nurse and Caretalk messages.
Protocol for the Nurse Specialist. As each new caregiver enters the group, the nurse specialist automatically receives an e-mail announcing the name of the subject and relationship to the person with stroke. Within 24 hours of the caregiver entering the group, the Nurse Specialist replies to the caregiver with a welcome message. If caregivers have not posted a message to Ask the Nurse or Caretalk in the first week of their participation, the nurse specialist sends an “encouragement to participate” message to caregivers via the Ask the Nurse email account.
On a weekly basis, the nurse specialist sends e-mail messages to the Caretalk mailing list every Monday and Thursday to stimulate discussion, such as news items and/or probing questions. The Nurse Specialist also checks the calendar weekly to determine which caregivers will be leaving the study and then cuts, pastes and sends a “thanks for participation” email message to them two weeks prior to their calculated end date of their participation in the study from Caretalk. The nurse specialist 's responses and further probes are based on the caregiver’s messages and follow the probes for the experience of caring based on Friedemann’s (1995, 2002) framework of systemic organization. There are five categories of system of probes: system maintenance, system change, coherence, individuation and congruence. System maintenance includes daily routines, caregiving patterns and all actions that maintain the system and protect it from threatening changes. A probe the nurse specialist used is: “Is religion important to you? If yes: What kind of practices are helpful to you? How do you manage to keep up your religious or spiritual practices in spite of caring for your loved one?” System Change leads to incorporation of new knowledge and assumption of new behaviors. A system change probe is: “Since you take care of your loved one, have you noticed that some of your priorities have changed or that you have a different attitude about things? Tell me about that….” Coherence is togetherness between family members, with individuals acquiring identity that is integrated into their personal structure. An example of a probe is, “How often do you feel that things get out of hand or that you are losing control? Congruence is a balance of systemic processes or a sense of well-being exhibited as freedom from anxiety and/or depression. A probe was: “Describe in detail one caring situation that gave you great satisfaction and one caring situation that was dissatisfying to you.”
All message content shared in private to Ask the Nurse and in group interactions to Caretalk is held in strict confidence by the nurse specialist and all research team members. If a relative/friend of a caregiver sends a message to Caretalk or Ask the Nurse, the nurse specialist responds back only to the caregiver in the study. The nurse specialist reinforces to the caregiver that the relative/friend is not a subject in the study, nor have they consented to participate in the study. If their message went to Caretalk, the nurse specialist reminds the caregiver that the message went to all the other subjects in the study, not just the nurse specialist. Only one such incidence has occurred and this was remedied by emailing the caregiver. This caregiver stated that he had given his daughter permission to use Caretalk, as she had specific questions concerning their situation.
On the 1st of each month from Caretalk, the nurse specialist sends a message related to a current news item on stroke or the Tip of the Month about stroke and caring to Caretalk in order to stimulate discussion among caregivers and the nurse. The following reliable Web sites are used as sources of news stories http://www.pslgroup.com or http://www.stroke-info.com and they are copied and pasted into Caretalk. Each quarter, the nurse specialist provides updates to the rehabilitation team members that include (a) examples of questions that the caregivers have asked, if they have not been consulted and (b) tells them the number of subjects currently in the study.
If a caregiver writes messages in a manner that indicates or sounds like he/she is depressed: the Nurse Specialist replies, “You do not seem very happy these days . . . have you talked with someone about how you are feeling? I encourage you to talk with a healthcare provider.” If a caregiver states in a message that he/she intends to harm self or others: 1) the Nurse Specialist obtains complete information on the subject (e.g. complete name, address, and telephone number) via the online forms and 2) telephones the caregiver and states, “I am very concerned by what you said in your e-mail message. Did you really mean to say that?” If the caregiver replies, “Yes,” then the nurse specialist continues, “I think you need to talk with someone about this immediately. I am concerned about you, but since I am not your health care provider, I am going to hang up now and call for emergency help. I also encourage you to call a friend or healthcare professional and talk with them about how you are feeling.” The nurse specialist calls Adult Protective Services or Family Independence Agency and 911 to report the expression of harm. The nurse specialist then telephones the project coordinator to report what has happened.
Ask the Nurse
The questions posed to Ask the Nurse can be generic to many caregivers, or specific to their loved one’s particular issues. A common question involves qualifications, payment and homebound status for physical therapy treatment. One wife asked, “What criteria is needed to qualify for physical therapy? It seems if significant progress is not seen in a week the therapy is considered not helpful. Stroke patients take time, lots of time and persistance. When they are told their efforts are fruitless why would they want to pursue it any longer. My husband needs encouragement everyday and not just from me.” The nurse specialist explained home care qualifications, told what qualified them for the actual therapy, and finally, tried to explain the limitations placed upon victims of stroke by insurance companies. This is a frequent question that the nurse specialist utilizes members of the rehabilitation team for additional information, ie the physical therapist and/or the physician.
A difference has emerged between male and female responders. Males typically send one sentence questions, such as, “Can I shave my wife’s legs? I am worried about the bleeding…” This illicited multiple questions from the nurse specialist including, “Is she on any blood thinners? What prompted your question? Is she bleeding a lot, a little? When does/did this happen? What did you do last time?” The nurse specialist’s suggestions included: speaking to her health care provider immediately, as he/she knows the stroke victim’s entire history, using an electric razor, and moisturizing her legs prior to, and using special shaving cream specific for legs. It was quite frustrating to utilize the Web with this question, as the nurse specialist never received answers to her questions posed. A one liner that stated “thanks for the information” was the only response many weeks later from this man.
Females, on the other hand, generally send many paragraphs with history and specific background information, etc. related to the specific question posed. If further information is requested, they usually respond within a day or two with the answers. Females have been much more interactive and timely in their responses. Depression is a common theme. Many wives asked, “He is so down on himself. Is depression common with stroke?” “Should he stay on his present antidepressant? How quickly do they work?” Information from the American Heart Association, Neurological Association and American Psychological Association Web sites was utilized in answering these questions. They were encouraged to share their concerns with the rest of the group on Caretalk and to utilize the educational links from the Caring~Web©.
Pain management was also a common theme. A typical question from the caregiver is, “Is it common for stroke victims to have pain in their leg or arm that has been affected?” The nurse specialist explained in lay terms the physiology of stroke with the common and uncommon pains identified. Medication questions frequently accompanied the pain questions. Sometimes there was a misunderstanding about what medications their loved ones were taking and why. Talking to their physician, nurse practitioner or physician assistant was a frequent recommendation by the nurse specialist.
The Ask the Nurse experience provides a new and exciting format for providing nursing interventions to caregivers of victims of stroke in their homes 24 hours a day. As this mode of intervention developed, a number of challenges presented themselves. Absence of nonverbal information, including body language, eye contact and intonations of voice were very difficult to deal with. Only the written word is present on the Internet. Lack of immediate response from the caregivers occurred frequently. Days, even weeks would go by without answers to questions the nurse specialist posed. Planning is delayed as the nurse specialist waited for a response at times. Technological problems challenged the need to be available and stay in touch. Though infrequent, Internet and server problems delayed interaction with the caregivers.
The nurse specialist had no history on the subjects except what the subjects chose to share after starting the study within Ask the Nurse and/or Caretalk. The only information the nurse specialist had was the study name of the caregiver and relationship to the victim of stroke. Infrequent responses from some subjects posed some concern. It was not known if the person did not look at his/her messages, tried it and it did not work, or something else was happenning. For example, some subjects took vacations and did not tell the nurse specialist until they returned.
The nurse specialist monitors, responds and provides questions and information via the discussion group Caretalk. Throughout the study, except for individual questions directed to the Ask the Nurse, subjects are encouraged to share questions, information, frustrations and life events through the discussion group.
The sharing is very personal, and the quick responses from others provides immediate support. Spiritual strength, family support, and a sense of humor are themes frequently discussed. A wife shared, “I am convinced that his youth, our faith and a great sense of humor got us here. We still have issues, but they seem so petty when I read about some of your struggles.” Reading others’ struggles appears to put their own life into a new and different perspective.
Lack of progress and therapy are two of the most frustrating and painful aspects of stroke discussed. One woman noted, “My mother has made so little progress and she has been in therapy for 3 months. Three months at the rehab and three and a half months at home. She seemed to be making better progress in rehab. Since she's been home she seems not to be trying as hard. Some days are so hopeful and others are so depressing. I was wondering if this is normal?” The lability of this caregiver is clear and the responses from the other caregivers were immediate and filled with helpful tips, sharing of ideas and ways to have a “normal life”. One said, “Know your own life goes on…sometimes much different than we expected, but it is a beautiful life!” Another person shared, “Humor can get you through the day! Small victories like moving a finger is worth celebrating!”
Getting one’s life back for the caregivers is another theme widely discussed. A daughter commented, “Am I ever going to get my life back? I love my mom and will be there as long as she needs me, but is there a light at the end of the tunnel?” The nurse specialist and many other caregivers responded by sharing ways to enjoy the lives they have now, such as how to relax, separate, and cope with the never ending responsibilities, and the burden of a different kind of life than expected. Sharing the successes has been common. A wife stated, “My hubby has been doing great though. He confided to me on Sunday that he feels really good. He even said that it was like before his stroke. He still has bad days and hasn't returned to full time at work, but I never thought he would be doing this well this soon. In April, the ICU doctors and nurses were trying to prepare me for life without him and look where he is now. I am convinced that his youth, our faith and a great sense of humor got us here.”
Physical issues and personality changes are shared with solutions offered with assistance from the rehabilitation team as needed. Another wife said, “He also still cradles his left arm alot. He has mobility in it, but the sensation of it is odd. Lastly, he has to have everything very orderly. When things aren't where they are supposed to be it really rattles him. Besides just being much more neat, he has a real NEED to know where everything is as far as important papers and accounts and policies. I used to handle all of that stuff, but now we know that we both need to be aware, because nothing is assured. Well I just wanted to let you know I'm still standing!” Team suggestions included sharing these issues with his doctor, as the doctor would know the person’s history and medications, to request a depression evaluation, an isotoner glove, further evaluation by the therapist and not letting the arm hang down were helpful to the caregiver.
Evaluation of the nurse specialist’s role comes from the direct comments by the caregivers and the interview feedback. A caregiver shared, “Then there is Amy…she is a wonderful support with so much to offer!” Another caregiver said, “Your information was so impressive to the doctor, as we brought the printouts of what you sent us.” One man commented, “I don’t know how we would do it without you and the rest of the group!” When a new subject would join the discussion, “Ask the Nurse is a valuable resource to us all!...You are an angel of mercy…I thank God for you!”
E-mail and Web sites are relatively inexpensive ways to connect with people and direct them to information that health care professionals want them to see. Timeliness is one of the greatest advantages of online communication. Increasingly, health care professionals in clinical settings are using the Internet to answer patients' medical questions, take requests for prescription refills, report some test results, monitor patients with chronic conditions, and direct patients to high-quality educational materials (Spicer, 1999). Although some of these uses may raise questions about patient confidentiality (e.g., reporting detailed test results via e-mail messages), doctors and nurses are finding that the Internet can help them stay in closer touch with patients, keeping them happier and potentially healthier. Guidelines are available to help health care professionals use e-mail effectively while reducing the medicolegal risks (Kane & Sands, 1998).
The nurse specialist is a key person on the Caring~Web© project. The ideal nurse specialist has a solid clinical background in rehabilitation nursing that includes caring for people with chronic illness and disease, as well as being an advocate of health promotion, and a skilled group facilitator. The nurse specialist role is labor intensive and may be emotionally draining, as this person reads and answers the Ask the Nurse and Caretalk discussion 7 days a week. The nurse specialist must be able to deal with the personal stress of knowing about the day-to-day events in the caregivers’ lives. This person needs to be well aware of community resources and have the ability to synthesize large amounts of information into meaningful words for the caregivers. Computer skills are essential or, at the very least, the nurse specialist must be willing to learn about and become comfortable with the use of the computer and the web.
The presence of the nurse specialist on Caring~Web© provides a unique environment of structure and security that does not exist in usual Internet support groups. Topics for discussion on Caretalk and answers to specific caregiver’s questions on Ask the Nurse, as well as joining in the discussion with the caregivers, are her primary responsibilities, Relationships are built during the time of the caregivers’ participation in the project. These functions do not exist on general Internet support groups. Major advantages of having the presence of the nurse specialist on Caring~Web© is that this competent professional can discuss dubious health information offered by the caregivers and can explain technical and/or complex information to the caregivers, in addition to providing support.
Feedback of the caregivers regarding their interactions with the nurse specialist has been very positive. One caregiver said, “thanks for being there.” The Caretalk discussion group provides a useful and heartfelt forum for caregivers to share questions, cry on the group’s shoulders and give support to each other. Its success would support utilization in a variety of areas including nursing homes, extended care facilities, and private homes via an agency’s web access forum.
Crisis intervention with no nonverbals was the largest challenge. Sometimes the crisis wasn’t even evident until the subject completed the study and interview data was reviewed. These challenges highlight the new ways the nurse specialist learned to assess and communicate on the web.
The applications in the clinical arena are many. A nurse specialist with the appropriate specialty and background would be key to providing this forum to multiple types of health care consumers. Psychiatric group homes, community outpatient centers, skilled and long term care facilities, rehabilitation centers, disease specific units/facilities/groups, and spinal cord injury units are only a few of the possible areas that could utilize this forum. Web-based communication makes the information available and the personal questions safe enough to ask. The support group does not need to be attended in a physical sense; only the power switch needs to be turned on. This opens the world of information, education, and nursing interventions to those that are disabled, unable to travel outside their home or their facility, unable to obtain respite care, and would be appropriate not only for caregivers, but for consumers of health care.
Nursing on the Internet is mostly uncharted territory. Nurses need to be there to help individuals understand the myriad of information that is available and to offer emotional and social support. There are roles, responsibilities, and risks associated with this Internet nursing role, but with careful planning, execution, and evaluation positive outcomes can occur. The nurse specialist on Caring~Web© has an uncommon opportunity to reach out to and make a difference for caregivers of persons with stroke, as they deal with the everyday realities of stroke.
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to the rehabilitation team who made this study possible. They include:
Barbara Hicks, MSN, RNC, Marc Miller, BS, Jamie Vargas, BS, Dr. Sadik
Khuder, Dr. Maire-Luise Friedemann, Dr. Teresa Thompson, Candace Tavormina,
BSN, RN, Kathy Mitchell, MSN, RN, CRRN, Marjorie Culbertson, MSN, MEd, RN,
Tammy Allison, BA, Heather Pierce, BA, LSW, Constance Eppstein, MS, LISW, Elizabeth
Grothaus, MSN, RN, CNS, Julie Smith, MS, RD/LD, CDE, Martin Rice, PhD, OTR/L,
Gregory Siegel, JD, RPh, Dr. Jean Venn, Michelle Masterson, MEd, PT, Lawrence
Horn, MD, Karen Lance, MS, CCC-SLP, Lisa Keaton, MSW, LSW.
Many thanks to the rehabilitation team who made this study possible. They include: Barbara Hicks, MSN, RNC, Marc Miller, BS, Jamie Vargas, BS, Dr. Sadik Khuder, Dr. Maire-Luise Friedemann, Dr. Teresa Thompson, Candace Tavormina, BSN, RN, Kathy Mitchell, MSN, RN, CRRN, Marjorie Culbertson, MSN, MEd, RN, Tammy Allison, BA, Heather Pierce, BA, LSW, Constance Eppstein, MS, LISW, Elizabeth Grothaus, MSN, RN, CNS, Julie Smith, MS, RD/LD, CDE, Martin Rice, PhD, OTR/L, Gregory Siegel, JD, RPh, Dr. Jean Venn, Michelle Masterson, MEd, PT, Lawrence Horn, MD, Karen Lance, MS, CCC-SLP, Lisa Keaton, MSW, LSW.