Telemedicine or Telehealth for Terminally Ill Patient

Afza.Malik GDA

Terminally Ill Patient and Telemedicine or Telehealth

Transitional Care In Health care System

What is Telehealth,Telehealth and Nursing,Telenursing and Benefits,Data Requirement,Modification to SEM,Model Specifications,Telehealth as Family Need,Telehealth as Caregiver Need for Terminally Ill Patient.

What is Telehealth

    Telehealth is defined as the use of interactive technology for the provision of clinical health care, patient and professional education, and health care administration over small and large distances (American Nurses Association, 1999; Chaffee, 1999). 

    The defining aspect of telehealth is the use of electronic signals to transfer various types of information from one site to another. Information ranges from clinical records to health promotion instructions to still images of wounds and motion images demonstrating exercise routines. 

    Throughout the published literatures relevant to the health sciences, telehealth is used interchangeably with telemedicine, and every so often the term telenursing will surface. The term telehealth is embraced as the more encompassing concept, descriptive of the state of technology used in the provision of health care; telemedicine and telenursing are subsets of telehealth.

Telehealth and Nursing 

    Telehealth has tremendous potential for nursing, both as a means of communication between nurses, patients, and their caregivers, and as a way to deliver tailored nursing services. Telehealth can serve in nearly every area of nursing care, from emergency response systems to hospital, home, and community care. 

    Telehealth has the potential of expanding health care services beyond traditional geographic boundaries and enabling access to a broader range of care options in previously underserved areas and at times where health care providers commonly are not accessible. It can be used for bedside nursing care, patient education, or to assist nursing care at distant sites. 

    This broad definition includes several means of transmission, including telephone and fax transmissions, interactive video and audio, store and forward technology, patient monitoring equipment, electronic patient records, electronic libraries and databases, the Internet and intranet, World Wide Web (WWW), electronic mail systems, decision and care planning support systems, and electronic documentation systems. 

    When used optimally, telehealth can be used to leverage limited health care resources to better meet the needs of patients (Darkins, Fisk, et al., 1996; Wakefield, Flanagan, et al., 2001).

    Most nurses have already been involved in telehealth without realizing it. Examples include telephoning or faxing a patient status report, telephone triage, home health visits via telecommunication for monitoring, and designing websites for educating patients

    While much attention has been paid to technology and innovative equipment as a potential to enhance the access and availability of health care services for patients regardless of where they live, very little work has been accomplished in the area of increased reviewing the efficiency and effectiveness of its applications. 

    An exception is the use of the telephone for consultations. Randomized clinical trials have established the efficacy of telephone consultation to improve patients' outcomes across a broad spectrum of patient populations (Balas, Jaffrey, et al., 1997). 

    Studies of interactive "teleconsultations" have been performed all over the world and most suggest that health care delivery via these technologies is acceptable to patients in a wide variety of circumstances.

Telenursing and Benefits

    Telenursing provides other potentials for nursing practice. A small but persuasive set of research projects (Whitten, Mair, et al., 1997; Hayes, Duffey, et al., 1998; Wootton, Loane, et al., 1998; Hagan, Morin, et al., 2000; Hanson , EJ, & Clarke, 2000; Hanson, EJ, Tetley, et al., 2000; Johnson-Mekota, Maas, et al., 2001; Jerant, Azari, et al., 2003) identified the important components of home care that could be delivered via telecommunications applications, demonstrated. 

    An advantage of using SEM to estimate models containing causal paths among the latent variables is that many of the regression assumptions can be relaxed or estimated. For example, with multiple regression, the analyst must assume perfect measurement (no) measurement error); however, with SEM, measurement error can be specified and the amount estimated. 

    In addition, constraints can be introduced based on theoretical expectations. For example, equality constraints, setting two or more paths to have equal values, are useful when the model contains cross lagged paths from three or more time points. The path from latent variable A at Time 

1. to latent variable B at Time 

2. can be set to equal the path from latent variable A at Time 2 to latent variable B at Time 

3. Equality constraints also are used to compare models for two or more different groups

    For example, to compare the models of effects of maternal employment on preterm and full-term child outcomes, paths in the preterm model can be constrained to be equal to the corresponding paths in the full term model.

Data Requirement 

    Data requirements for SEM are similar to those for factor analysis and multiple regression in level of measurement but not sample size. Exogenous variables can have indicators that are measured as interval, near interval, or categorical (dummy, effect, or orthogonally coded) levels, but endogenous variables must have indicators that are measured at the interval or near-interval level. 

    The rule of thumb regarding the number of cases needed for SEM, 5 to 10 cases per parameter to be estimated, suggests considerably larger samples than usually needed for multiple regression; Thus, samples of 100 for a very modest model to 500 or more for more complex models are often required. Despite the advantages of SEM, these larger samples can result in complex and costly studies.

    Structural equation modeling is generally a multistage procedure. First, the SEM implied by the theoretical model is tested and the fit of the model to the observed data is evaluated. A nonsignificant 7 indicates acceptable fit, but this is difficult to obtain because the x' value is heavily influenced (increased) by larger sample sizes. 

    Thus, most analytical programs provide other measures of fit. A well-fitting model is necessary before the parameter estimates can be evaluated and interpreted.

Modification to SEM

    In most cases, the original theoretical model does not fit the data well, and modifications must be made to the model in order to obtain a well-fitting model. Although deletion of nonsignificant paths (based on r values) is possible, modifications generally focus on the inclusion of omitted paths (causal or correlational). 

    Any path that is omitted specifies that there is no relationship, implying a parameter of zero; Thus, analysis programs constrain these paths to be zero. 

    After estimating the specified model, most programs provide a numerical estimate of the “strain” experienced by fixing parameters to zero or improvement in fit that would result from freeing the parameters (allowing them to vary). Suggested paths must be theoretically defensible before adding them to the respecified model.

Model Specifications

    Because the model specification is based on the data at hand in the light of theoretical evidence and those data are repeatedly tested, the significance level of the x is actually higher than what the program indicates. Thus, other criteria are necessary to evaluate the adequacy of the final model. 

    First is the theoretical appropriateness of the final model. Comparison of the original model with the final model will indicate how much “trimming” has taken place. In addition, the values and signs of the parameters are evaluated. The signs (positive or negative) of the parameters should be in the expected direction. 

    Parameters on the paths between the latent variable and its indicators should be > .50 but ≤ 1.0 in a standardized solution. The lower the unexplained variance of the endogenous variables, the better the model performed in explaining those endogenous variables (similar to the 1-R value in multiple regression). 

    Results that are consistent with a priori expectations and findings from previous research increase one's confidence in the model disease and its treatment. And for health care providers, and particularly nurses, feeding and hydration of patients including subcutaneous fluids was deemed appropriate if it would make the family members more comfortable. 

    The ten nurse respondents in this study of health care providers felt that the decision regarding hydration was to be made by the physician (McAulay, 2001). It would be interesting to see whether this finding would be upheld were the study conducted with a larger number of nurses and if those nurses represented a variety of countries.

Telehealth as Family Need

    The needs of families of those who are terminally ill has also been of interest to researchers. The prevalence of pathologies and decreasing health in the informal caregivers as well as their efforts, often unsuccessful, in getting physicians to give serious attention to symptoms in their terminally ill family members adds to the stress of both patient and caregivers (Davis, BD, Cowley , & Ryland, 1996). 

    Interestingly, Tang, Aaronson, and Forbes (2004) found that terminally ill persons who did not live with their caregivers had more social support, less pain intensity, higher spirituality, and a significantly better quality of life.

Telehealth as Caregiver Need for Terminally Ill Patient

    The needs of caregivers of terminally ill children present other issues. Factors that influence how families navigate this terrain include the relationship with health care providers, the availability of information, and the effectiveness of communication between parents (Steele, RG, 2002). 

    In a grounded theory investigation of a nurse facilitated empowering intervention of 24 family caregivers of terminally ill patients, it was found that information, education, encouragement, and support were required by these caregivers (Mok, Chan, Chan, & Yeung, 2002). 

    The importance of a trusting relationship with caregivers and the confidence that the caregiver will not be abandoned was also found to be crucial, reinforcing previous findings. The need for information and support was underscored in another study examining the adequacy of primary care and the deployment of visiting nurses in Great Britain (Beaver, Luker, & Woods, 2000). 

    Examining the management of time in caring for a terminally ill person in the home, KE Rose (1998) observed that in addition to the practical and emotional tasks as well as outside demands facing caregivers, there was also the uncertainty that was the context in which these activities transpired. 

    With regard to time this uncertainty means not knowing how many hours, days, weeks, or months are left prior to the patient's demise. Time and uncertainty also interact in the question of what will happen prior to death and how that time until death will be experienced. 

    Finally, there is also the uncertainty as to what will happen in the time after the patient's death. Nonetheless, other studies have found that the meaning that is found in caregiving enabled caregivers to develop a new view of life and reach out to help others.

    In another qualitative study, Duke (1998) examined the lived experience of being with a terminally ill spouse and then being bereaved. 

    The themes that arose during the illness phase were related to sharing the illness experience, being a caregiver and providing comfort, being in limbo, and knowing that this time was a period of creating memories that would be treasured as well as those memories of experiences that were emblematic of the transition along the illness trajectory.

    Repeatedly in the research on caregivers of terminally ill persons, the need for information has been stressed. In Norway and Sweden, using 45 forced choice open ended questions, researchers found that respondents supported ongoing disclosure of information to terminally ill patients (Lorensen, Davis, Konishi, & Bunch, 2003). 

    This contrasts sharply with parts of Europe and Japan where it is the custom to speak with the family rather than the patient. Interestingly this is also the view of many Korean Americans and Mexican Americans in the survey of 800 elderly residents at 31 senior citizen centers in Los Angeles County conducted by Blackhall, Murphy, and Frank (1995). 

    Younger and more affluent Korean Americans and Mexican Americans were more likely to share the views of other Americans and expect to be given information as patients.

    Finally, caregivers often serve as the source of information about the end-of-life experience of the terminally ill person. Quality of care and satisfaction with care are measured by the reports of family members of the patient's experience. Hinton's (1996) reinterview of 71 relatives showed that there is variable agreement with earlier statements made by these same individuals. 

    This raises a question about the validity and reliability of such measurements when used to indicate the satisfaction with care of the terminally ill person. At the same time, there is no easy answer as to how satisfaction with care of terminally ill persons is to be measured given the fragile condition of persons nearing the end of their lives.

    Research with the terminally ill as with other patients demands the calculation of a risk/benefit ratio. In this case, the research may not benefit the individual participant but it may be of benefit to future terminally ill persons. 

    Given the condition of terminally ill persons, qualitative research has been favored as a method of inquiry. That leaves the question of the generalizability of the results; quantitative methods are important for future studies. As the research results accumulate, the translation of the research findings into practice will enhance the care of the terminally ill.


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