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Home Health Care Services Quarterly Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/whhc20
A Feasibility Study of Low-Income Homebound Older Adults’ Participation in an Online Chronic Disease SelfManagement Program a
a
Namkee G. Choi PhD , Sok An MSSW & Alexandra Garcia RN, FAAN
b
a
The University of Texas at Austin School of Social Work, Austin, Texas, USA b
The University of Texas School of Nursing, Austin, Texas, USA Accepted author version posted online: 14 Apr 2014.Published online: 29 May 2014.
Click for updates To cite this article: Namkee G. Choi PhD, Sok An MSSW & Alexandra Garcia RN, FAAN (2014) A Feasibility Study of Low-Income Homebound Older Adults’ Participation in an Online Chronic Disease Self-Management Program, Home Health Care Services Quarterly, 33:2, 106-120, DOI: 10.1080/01621424.2014.908797 To link to this article: http://dx.doi.org/10.1080/01621424.2014.908797
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms &
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Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
Home Health Care Services Quarterly, 33:106–120, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0162-1424 print/1545-0856 online DOI: 10.1080/01621424.2014.908797
A Feasibility Study of Low-Income Homebound Older Adults’ Participation in an Online Chronic Disease Self-Management Program
Downloaded by [University of Nebraska, Lincoln] at 15:49 07 April 2015
NAMKEE G. CHOI, PhD and SOK AN, MSSW The University of Texas at Austin School of Social Work, Austin, Texas, USA
ALEXANDRA GARCIA, PhD, RN, FAAN The University of Texas School of Nursing, Austin, Texas, USA
This study explored the feasibility of “Better Choices, Better Health” (BCBH), the online version of Stanford’s Chronic Disease Self-Management Program, among 10 low-income homebound older adults with no or limited computer skills, compared with 10 peers with high computer skills. Computer training was provided before and at the beginning of the BCBH workshop. Feasibility data consisted of field notes by a research assistant who provided computer training, participants’ weekly logs, and a semi-structured interview with each participant at 4 weeks after the completion of BCBH. All those who initially lacked computer skills were able to participate in BCBH with a few hours of face-to-face demonstration and training. The 4-week postintervention follow-up showed significant improvement in health and self-management outcomes. Aging-service agencies need to introduce BCBH to low-income homebound older adults and utilize their volunteer base to provide computer and Internet skills training for low-income homebound older adults in need of such training. KEYWORDS chronic disease, computer and Internet, homebound older adults, self-management
Address correspondence to Namkee G. Choi, PhD, The University of Texas at Austin School of Social Work, 1925 San Jacinto Boulevard, Austin, TX 78712-0358, USA. E-mail: [email protected] 106
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INTRODUCTION Overall disability rates in later life are projected to continue to decline and morbidity is being compressed into the period just before death (Cutler, Ghosh, & Landrum, 2013). However, the rapid growth of the older-adult population will significantly increase the number of homebound older adults—defined by Medicare as those who, due to an illness or disability, require substantial efforts or assistance in leaving home (Centers for Medicare and Medicare Services, n.d.). The increasing racial/ethnic diversity among older adults also translates into a growing number of low-income, racial/ethnic minority homebound older adults and the increasing burden of high health care costs. Because of their multiple chronic, often uncontrolled diseases, homebound older adults, especially those with low income, are the most frequent users of emergency departments, hospital inpatient services, and other health care services (Gruneir, Silver, & Rochon, 2011; Qiu et al., 2010). The Stanford Chronic Disease Self-Management Program (CDSMP), a 6weekly group workshop, was found effective in preventing disability and/or delaying deterioration of disease and disability as well as in reducing health care utilization cost in a series of randomized controlled trials (Lorig et al., 1999; Lorig, Hurwicz, Sobel, Hobbs, & Ritter, 2005; Gordon & Galloway, 2008). In a public health, population-based approach to extending reach to large numbers of people with chronic diseases, the Stanford team developed the Internet-based CDSMP. The online program’s impact on participants (mostly non-Hispanic White in their mid-50s with 15+ years of education) has been similar to that of the original face-to-face program, as it demonstrated improvement in health status and self-efficacy measures (Bruce, Lorig, & Laurent, 2007; Lorig, Ritter, Laurent, & Plant, 2006, 2008; Lorig et al., 2010). In April 2011, the National Council on Aging (NCOA), in collaboration with the Stanford developers, made the online program “Better Choices, Better Health” (BCBH) available free of charge to anyone with a chronic disease (NCOA, n.d.). The 6-week long BCBH (generic, diabetes, or arthritis) consists of a password-protected, dedicated website that contains Learning Center (where new reading materials are posted each week for self-directed learning of self-management techniques); Discussion Center (containing four interactive bulletin boards: the action-planning board, the problem-solving board, the difficult emotions board, and the celebrations board); My Tools (confidential personal area for goal setting, journaling, exercise monitoring, medication records, and relaxation zone); Post Office (through which participants can exchange emails with one or more other participants); Help (where participants can take a tutorial on how to use the workshop and learn computer skills, such as how to scroll and use pop-up windows); and Class Profile (a place to get to know the other participants). Once a participant enrolls in
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the program, he/she also receives a reference book specific to the BCBH workshop (e.g., Living a Healthy Life with Chronic Conditions) that includes information on major types of chronic diseases and on medications, as well as detailed illustrations to provide help in doing suggested exercises. Each week for 6 weeks, participants (20–25 per workshop) are asked to log on at least three times (at their convenience) for a total of 2–3 hours and to participate in that week’s activities. The combined self-reading of the week’s contents in the Learning Center, interactive discussions via postings on the bulletin boards in the Discussion Center, and guidance and encouragement from a pair of trained peer facilitators and other participants are designed to equip the participants with knowledge and skills for selfmanagement. Self-efficacy is enhanced through goal setting (weekly action plans); modeling; interpretation of symptoms; social persuasion (from facilitators, other participants, and family/friends); and skills mastery (Lorig et al., 2008). Despite the availability and strong evidence base of CDSMP and BCBH, a large proportion of low-income homebound older adults face significant barriers to accessing them. Barriers to attending face-to-face CDSMP sessions include the lack of transportation and the cost of transporting these older adults to a workshop site, as is the case with other health and mental health services (Choi, Lee, & Goldstein, 2011). Primary barriers to using online BCBH include a lack of computer/Internet literacy and Internet access (Choi & DiNitto, 2013), because BCBH requires webpage navigation skills and bulletin board postings and discussions with the moderators/facilitators and other participants. However, owing to rapidly expanding Internet access among older adults in general (Zickuhr & Madden, 2012) and the decreasing cost of electronic devices (e.g., netbooks, Chromebooks), the proportion of these older adults with Internet access is expected to grow in the future. Thus, BCBH holds more promise than face-to-face CDSMP as a feasible, low-cost means of chronic disease self-management support for low-income homebound older adults. However, no concerted effort has been made to improve participation by these older adults. The purposes of this pilot study were (a) to explore the feasibility of BCBH use among low-income homebound older adults who had no or limited computer literacy, focusing on the type of computer and Internet navigation skills training that may be needed to facilitate their BCBH participation; and (b) to measure health-related outcomes at 4 weeks after the completion of their participation (i.e., 10 weeks since BCBH workshop participation). The health outcomes of these older adults were compared with those of their age peers who had sufficient computer skills and participated in BCBH without any training from the study team. Considering the high personal and societal cost of uncontrolled chronic diseases and the strong evidence base of the BCBH, it was important to explore ways to facilitate its utilization among this population.
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METHODS
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Study Participants All 20 participants were recipients of Meals on Wheels (MOW) in a large Central Texas city, who were referred to the study by their case managers. The MOW program serves 2,100 homebound older adults (60% Black or Hispanic) daily, with more than 95% of them having income at or below 200% of the official poverty line (OPL). Referred older adults were screened by the first author via telephone using a brief questionnaire. Inclusion criteria were: English proficiency, ability to type, score > 8 on the 10-item Short Portable Mental Status Questionnaire (SPMSQ; Pfeiffer, 1975), and income at or below 200% of OPL. English proficiency was measured with two questions: “Do you read newspapers, magazines, or books in English?” and “Do you have any trouble understanding what you read in English?” Ability to type was measured with a question: “Are you able to type with any number of fingers?” With respect to computer skills, we deliberately sought the equal representation of (a) those without or with only limited computer skills (i.e., never a computer user or a past/current user with difficulty navigating/seeking online information: low-skill group); and (b) those with skills that were deemed sufficient for them to participate in the BCBH workshop without further computer skills training (i.e., current Internet user who can navigate/seek information with ease: high-skill group). The skill level among past/current users was determined based on (a) telephone screening questions about any Internet activities in which that they were engaged; and (b) a research assistant’s (RA) observation or test of their skills. Of the 37 individuals (30 women and 7 men) referred to the study between June 2012 and February 2013, 11 were screened out or declined participation during the telephone screening due to inability to type (n = 4), body pain/other health problems that would make it difficult to sit in front of computer two to three times a week (n = 3), out-of-town travel plans (n = 2), cognitive impairment (n = 1), and hospitalization of a loved one (n = 1). Twenty-six individuals completed baseline interviews and registered for the NCOA’s BCBH (placing their names on the interest list); however, 5 withdrew from the study before the workshop began because of health crises and loss of interest, and 1 dropped out after the first BCBH session because he disliked the amount of reading required. Twenty (10 each in low-skill and high-skill groups) completed their participation in all 6-week BCBH sessions and provided 4-week post-BCBH follow-up data. No significant difference in demographic characteristics was found between the 20 participants and the 17 nonparticipants or between the 10 low-skill participants and 10 high-skill participants. All 20 participants received a small monetary compensation ($30) for their study participation. The study was approved by the authors’ institutional review board.
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BCBH Registration and Enrollment of the Study Participants Of the low-skill participants, three had never owned and used a computer, two had occasionally used a computer in the apartment complex, and five had a computer at home. Regardless of their access to or ownership of a computer, all seven had only minimal computer/Internet skills (e.g., did not know how to access their email accounts and search and navigate webpages). Of the high-skill participants, nine owned a computer, and one had used a computer at a public library. To enable their participation in BCBH workshop, the study team loaned laptops with prepaid wireless cards to four (three low-skill and one high-skill) participants for the duration of their BCBH participation. The RA introduced all participants to the NCOA’s BCBH registration page and helped them create the BCBH user name and password and complete the BCBH consent form. For those in the low-skill group, the RA provided a cheat sheet and taught them basic computer and Internet operational skills (e.g., turning on and off, opening Internet Explorer, navigating, and creating and managing an e-mail account). The participants were asked to practice their computer/Internet operational skills, by using the cheat sheet and online training materials (e.g., Mousing Around) and by playing basic computer games (e.g., Spider Solitaire to practice touch pad and mouse use) prior to their workshop enrollment. Once a potential participant registered, the NCOA sent an invitation e-mail (usually in 1–3 weeks) to inform him or her of the BCBH start date and the enrollment URL. The participants were instructed to contact the RA upon receipt of the e-mail, so that the RA could help them complete their personal profile (including health status and a screen name to use during the workshop). Following the e-mail receipt, the RA met with each low-skill participant in his or her home for a second time to help them enroll, create the BCBH icon on the computer desktop for easy access to the website, and provide further computer/Internet skills training (e.g., how to use the BCBH tutorials). Each computer/Internet training session lasted 60–90 minutes. The RA was also present at their home for the first BCBH session of four low-skill participants at their request (either they felt that they were not confident enough to do it alone or they had problems logging in for the first session). Two low-skill participants requested further assistance when they encountered problems during the first week of the workshop. These additional training/assistance sessions lasted up to 30 minutes each. Nine high-skill participants completed the enrollment process and read the BCBH Tutorial by themselves. Only one needed help with the enrollment process due to a log-in problem. All participants were encouraged to use online training materials and the BCBH’s Help Center materials to solve any problems in navigating and understanding the content (e.g., using the Glossary chapter). All participants
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were also asked to record the number of times that they had logged in each week and any BCBH process-related difficulties they had encountered during navigation and posting. The RA made a 10-minute, weekly telephone call to each participant during the 6-week workshop to check the participant’s progress.
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Data Collection and Outcome Measures Data on feasibility were collected with (a) detailed observational field notes about computer/Internet skills deficit, training needs, and training efficacy that the RA compiled following each in-person visit or telephone call; (b) the short evaluation form that each participant filled out weekly to record the number of log-ins and any problems encountered; and (c) a semistructured open-ended questionnaire covering the participant’s experience, perceptions, and suggestions at 4 weeks after the completion of BCBH. At the time of the BCBH registration (baseline) and at 4 weeks after the completion of BCBH, participants were also given a short paper-form, self-report questionnaire developed by the Stanford Patient Education Research Center for the CDSMP participants (Stanford Patient Education Research Center, 2007) and the 9-item Patient Health Questionnaire (PHQ-9) assessing depressive symptoms (Kroenke, Spitzer, & Williams, 2001). The internal consistency reliability of the PHQ-9 for the study sample was .71 at baseline and .73 at 4week follow-up. The variables in the Stanford questionnaire were as follows: (a) demographics, (b) health status, (c) symptoms, (d) physical activities, (e) self-efficacy, (f) daily activities, and (g) medical care. DEMOGRAPHICS Demographics included date of birth, gender, race/ethnicity, highest year of school completed, and marital status. HEALTH
STATUS
Health status comprised the following: (a) checklist for chronic conditions and diseases (hypertension, diabetes, asthma, lung disease—emphysema, COPD, or other—heart disease, kidney disease, cancer, and others); and (b) global self-ratings of health on a 5-point scale (1 = excellent, 5 = poor). SYMPTOMS Symptoms (preceding 2 weeks) constituted: (a) four items on health-related distress (discouraged by health problems, fearful about future health, health a worry in your life, and frustrated by health problems) on a 6-point scale (0 = none of the time, 5 = all the time); and (b) visual numeric scales for
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fatigue, shortness of breath, and pain on an 11-point scale (0 = no problem, 10 = severe problem). The distress scale score is the mean of the four items (range = 1–5). The internal consistency reliability for the study sample was .84 at baseline and .64 at 4-week follow-up.
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PHYSICAL
ACTIVITIES
Physical activites (preceding week) involved six items on minutes per week spent doing the following exercises: stretching/strengthening exercise, walking, swimming/aquatic exercise, bicycling/stationary bicycling, working out on aerobic exercise equipment, and other aerobic exercise on a 5-point scale (0 = none, 4 = more than 3 hours per week). The combined minutes of any type of exercise were calculated in this study. SELF-EFFICACY Self-efficacy (present time) incorporated four items on the confidence level of keeping fatigue, physical discomfort/pain, emotional distress, and other symptoms of health problems from interfering with the things the participant wants to do; and two items on the confidence level of doing different tasks and activities needed to manage health conditions and doing things other than just taking medication to reduce daily effects of illness. All were measured on a 10-point scale (1= not at all confident, 10 = totally confident). The score for the scale is the mean of the six items (range = 1–10). The internal consistency reliability for the study sample was .84 at both baseline and 4-week follow-up. DAILY
ACTIVITIES
Daily activities (preceding 2 weeks) encompassed four items on limitations, due to health conditions, in social activities, hobbies/recreational activities, household chores, and errands and shopping. The score for the scale is the mean of the six items (range = 1–10). The internal consistency reliability for the study sample was .86 at both baseline and 4-week follow-up. MEDICAL
CARE
Communication with doctor covered three items on preparing a list of questions, asking questions, and discussing personal problems related to illness on a 6-point scale (0 = never, 5 = always); and four items on health care utilization (the number of visits to a physician and emergency department, number of times hospitalized, and the hospital location). The internal consistency reliability for the study sample was .67 at baseline and .85 at 4-week
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follow-up. Although the medical care section also included health care utilization (numbers of doctor visits, hospital emergency department visits, overnight hospital stay, and nights spent in the hospital), we did not include health care utilization in our 4-week postintervention follow-up assessment, given that the time period of the measures was “in the past 6 months.”
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Data Analysis The first author and the second author independently read and summarized the RA’s field notes and the participants’ written responses to the openended questions at 4-week postintervention follow-up, and then compared and discussed them to produce a final summary. For quantitative data analysis, descriptive pairwise t tests were used to compare baseline and 4-week postintervention follow-up scores in the domains of global self-ratings health, symptoms, physical activities, daily activity limitations, communications with doctor, and depressive symptoms. Independent groups t tests were used to compare the study participants by their initial computer skills level (i.e., lowskill group vs. high-skill group) and age group (i.e., ≤ 70 group vs. 71+ year group). Due to the small sample size, the study was not powered to conduct meaningful outcome analysis. However, the bivariate analysis results provided preliminary insights into possible changes in the participants’ states and perceptions related to these domains 4 weeks after the completion of the BCBH workshop.
RESULTS Sample Characteristics As seen in Table 1, the average age of the participants was 70 (SD = 6.54) years; they were 85% female; 35% were non-Hispanic White (n = 7) and 65% non-White (6 Blacks, 5 Hispanics, 1 Native American, and 1 Asian American); and they had, on average, 13.7 (SD = 2.15) years of education. The participants had, on average, 4.3 (SD = 1.67) chronic medical conditions and visited their physician 5.35 (SD = 3.73) times in the preceding 6 months. In addition, 25% of the participants visited emergency department and 15% was hospitalized in the preceding 6 months.
Computer Skills Deficits at the Outset Computer skills deficits common to all low-skill participants were: (a) unfamiliarity with the various function keys (Caps, Shift, Ctrl, Backspace, Del, Esc) on the keyboard; (b) difficulty using a touch pad, a mouse (including its wheel), and a cursor, mostly due to poor finger coordination; (c) losing
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TABLE 1 Participant Characteristics (N = 20)
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Characteristics
M ± SD or n (%)
Age (years), range (62−86) Age group (n, %) 62−70 71−80 81+ Gender (n, %) Female Male Race/ethnicity (n, %) Non-Hispanic White Black Hispanic Native American Asian American Marital status (n, %) Married Widowed Divorced/separate Never married Education (years), range (GED−18) No. of chronic medical conditions No. of physician visits,a range (2−16) Emergency department visita (n, %) Hospitalizationa (n, %) Type of BCBH workshop participated (n, %) General Arthritis Diabetes a
70.30 ± 6.54 12 (60.0) 6 (30.0) 2 (10.0) 17 (85.0) 3 (15.0) 7 (35.0) 6 (30.0) 5 (25.0) 1 (5.0) 1 (5.0) 2 (10.0) 7 (35.0) 9 (45.0) 2 (10.0) 13.70 ± 2.15 4.30 ± 1.67 5.35 ± 3.73 5 (25.0) 3 (15.0) 2 (10.0) 9 (45.0) 9 (45.0)
During the preceding 6 months.
a cursor on the screen; (d) confusion about single- versus double-clicking icons; (e) unfamiliarity with minimizing, maximizing, and closing windows; (f) unfamiliarity with moving pages up and down with the side scroll bar or mouse wheel; (g) unfamiliarity with drop-down menus; and (h) slow typing and typo correction.
Initial Skills Deficits Related to BCBH Website Navigation The problems that low-skill participants experienced during their BCBH registration and the workshop’s first week were: (a) creating user name and password for the BCBH secure website and often forgetting them (n = 5); (b) confusion between user name/password for their e-mail account and those for the BCBH workshop (n = 3); (c) making typing errors when inputting their user name and password and then being shut out from the log-in process (n = 8); (d) moving between and double-clicking tabs for different Centers (n = 8); (e) forgetting about posting their action plans (n = 2); (f)
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participating in the Discussion Center (n = 5); and (g) not being able to use and reply through Post Office (n = 2).
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Training Efficacy and Family Members’ Assistance For six low-skill participants, two sessions (60–90 minutes each) of basic computer skills training were sufficient for their successful participation in BCBH. The other four needed an additional training or trouble-shooting session that lasted up to 60 minutes. All of them reported that they practiced the Internet navigation skills on their own using the cheat sheet, and some also reported that they had received additional training from their family members (spouse, son, daughter, grandchild). By the second week of their BCBH participation, no one requested additional training, and all reported that they were comfortable with and enjoyed their BCBH participation, fully using the BCBH Centers and Post Office to communicate with other participants. For those who did not use Discussion Center and Post Office in the beginning, a simple reminder or encouragement from the RA during the weekly telephone call or the BCBH workshop facilitators worked effectively. Some participants reported that they were initially hesitant about posting their comments on Discussion Center and using Post Office due to “shyness” and “discomfort” about communicating with the other participants whom they had never met, but most became fully engaged by the second week. Although three participants stated that the reading materials were too dense to digest during the first week, they were able to go back and review the materials as their computer skills improved. All participants reported that they liked the reference book and used it extensively.
Four-Week Post-BCBH Quantitative Outcomes Table 2 shows that compared with the baseline scores, the 4-week postintervention follow-up scores on all outcome variables, with the exception of communication with doctors, were significantly improved. At baseline, 14 participants (70%) rated their health as fair or poor, and 6 (30%) rated it good or very good. At follow-up, only 4 (20%) rated it fair or poor and 16 (80%) rated it good or very good. No one rated it excellent at either time. The severity scores of fatigue and pain decreased by more than 30%; health distress score decreased by 60%; the self-efficacy (confidence) score increased by more than 30%. Exercise duration increased by more than 60%, and the PHQ-9 score decreased by 30%. The t tests found no significant difference in the follow-up scores between low-skill and high-skill participants. Further analysis found no age group (≤ 70 vs. ≥71 years) difference in follow-up scores in any of the outcome measures, although the older age group had significantly lower self-efficacy score at baseline (4.25 ± 1.81 vs. 6.33 ± 1.58 for the ≤ 70 group, t = 2.728, p = .01).
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TABLE 2 Comparison Between Baseline and 4-Week Follow-Up Scores
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Variable Self-rated health Symptoms (health-related distress) Fatigue Shortness of breath Pain Daily activity limitation Physical activities (in minutes) Median Range Self-efficacy (confidence) Communication with doctor PHQ-9 Range
Baseline
Follow-up
t value
3.80 ± 0.89 2.38 ± 1.24
2.85 ± 0.88 0.96 ± 0.80
4.254 5.200
Home Health Care Services Quarterly Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/whhc20
A Feasibility Study of Low-Income Homebound Older Adults’ Participation in an Online Chronic Disease SelfManagement Program a
a
Namkee G. Choi PhD , Sok An MSSW & Alexandra Garcia RN, FAAN
b
a
The University of Texas at Austin School of Social Work, Austin, Texas, USA b
The University of Texas School of Nursing, Austin, Texas, USA Accepted author version posted online: 14 Apr 2014.Published online: 29 May 2014.
Click for updates To cite this article: Namkee G. Choi PhD, Sok An MSSW & Alexandra Garcia RN, FAAN (2014) A Feasibility Study of Low-Income Homebound Older Adults’ Participation in an Online Chronic Disease Self-Management Program, Home Health Care Services Quarterly, 33:2, 106-120, DOI: 10.1080/01621424.2014.908797 To link to this article: http://dx.doi.org/10.1080/01621424.2014.908797
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms &
Downloaded by [University of Nebraska, Lincoln] at 15:49 07 April 2015
Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
Home Health Care Services Quarterly, 33:106–120, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0162-1424 print/1545-0856 online DOI: 10.1080/01621424.2014.908797
A Feasibility Study of Low-Income Homebound Older Adults’ Participation in an Online Chronic Disease Self-Management Program
Downloaded by [University of Nebraska, Lincoln] at 15:49 07 April 2015
NAMKEE G. CHOI, PhD and SOK AN, MSSW The University of Texas at Austin School of Social Work, Austin, Texas, USA
ALEXANDRA GARCIA, PhD, RN, FAAN The University of Texas School of Nursing, Austin, Texas, USA
This study explored the feasibility of “Better Choices, Better Health” (BCBH), the online version of Stanford’s Chronic Disease Self-Management Program, among 10 low-income homebound older adults with no or limited computer skills, compared with 10 peers with high computer skills. Computer training was provided before and at the beginning of the BCBH workshop. Feasibility data consisted of field notes by a research assistant who provided computer training, participants’ weekly logs, and a semi-structured interview with each participant at 4 weeks after the completion of BCBH. All those who initially lacked computer skills were able to participate in BCBH with a few hours of face-to-face demonstration and training. The 4-week postintervention follow-up showed significant improvement in health and self-management outcomes. Aging-service agencies need to introduce BCBH to low-income homebound older adults and utilize their volunteer base to provide computer and Internet skills training for low-income homebound older adults in need of such training. KEYWORDS chronic disease, computer and Internet, homebound older adults, self-management
Address correspondence to Namkee G. Choi, PhD, The University of Texas at Austin School of Social Work, 1925 San Jacinto Boulevard, Austin, TX 78712-0358, USA. E-mail: [email protected] 106
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INTRODUCTION Overall disability rates in later life are projected to continue to decline and morbidity is being compressed into the period just before death (Cutler, Ghosh, & Landrum, 2013). However, the rapid growth of the older-adult population will significantly increase the number of homebound older adults—defined by Medicare as those who, due to an illness or disability, require substantial efforts or assistance in leaving home (Centers for Medicare and Medicare Services, n.d.). The increasing racial/ethnic diversity among older adults also translates into a growing number of low-income, racial/ethnic minority homebound older adults and the increasing burden of high health care costs. Because of their multiple chronic, often uncontrolled diseases, homebound older adults, especially those with low income, are the most frequent users of emergency departments, hospital inpatient services, and other health care services (Gruneir, Silver, & Rochon, 2011; Qiu et al., 2010). The Stanford Chronic Disease Self-Management Program (CDSMP), a 6weekly group workshop, was found effective in preventing disability and/or delaying deterioration of disease and disability as well as in reducing health care utilization cost in a series of randomized controlled trials (Lorig et al., 1999; Lorig, Hurwicz, Sobel, Hobbs, & Ritter, 2005; Gordon & Galloway, 2008). In a public health, population-based approach to extending reach to large numbers of people with chronic diseases, the Stanford team developed the Internet-based CDSMP. The online program’s impact on participants (mostly non-Hispanic White in their mid-50s with 15+ years of education) has been similar to that of the original face-to-face program, as it demonstrated improvement in health status and self-efficacy measures (Bruce, Lorig, & Laurent, 2007; Lorig, Ritter, Laurent, & Plant, 2006, 2008; Lorig et al., 2010). In April 2011, the National Council on Aging (NCOA), in collaboration with the Stanford developers, made the online program “Better Choices, Better Health” (BCBH) available free of charge to anyone with a chronic disease (NCOA, n.d.). The 6-week long BCBH (generic, diabetes, or arthritis) consists of a password-protected, dedicated website that contains Learning Center (where new reading materials are posted each week for self-directed learning of self-management techniques); Discussion Center (containing four interactive bulletin boards: the action-planning board, the problem-solving board, the difficult emotions board, and the celebrations board); My Tools (confidential personal area for goal setting, journaling, exercise monitoring, medication records, and relaxation zone); Post Office (through which participants can exchange emails with one or more other participants); Help (where participants can take a tutorial on how to use the workshop and learn computer skills, such as how to scroll and use pop-up windows); and Class Profile (a place to get to know the other participants). Once a participant enrolls in
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the program, he/she also receives a reference book specific to the BCBH workshop (e.g., Living a Healthy Life with Chronic Conditions) that includes information on major types of chronic diseases and on medications, as well as detailed illustrations to provide help in doing suggested exercises. Each week for 6 weeks, participants (20–25 per workshop) are asked to log on at least three times (at their convenience) for a total of 2–3 hours and to participate in that week’s activities. The combined self-reading of the week’s contents in the Learning Center, interactive discussions via postings on the bulletin boards in the Discussion Center, and guidance and encouragement from a pair of trained peer facilitators and other participants are designed to equip the participants with knowledge and skills for selfmanagement. Self-efficacy is enhanced through goal setting (weekly action plans); modeling; interpretation of symptoms; social persuasion (from facilitators, other participants, and family/friends); and skills mastery (Lorig et al., 2008). Despite the availability and strong evidence base of CDSMP and BCBH, a large proportion of low-income homebound older adults face significant barriers to accessing them. Barriers to attending face-to-face CDSMP sessions include the lack of transportation and the cost of transporting these older adults to a workshop site, as is the case with other health and mental health services (Choi, Lee, & Goldstein, 2011). Primary barriers to using online BCBH include a lack of computer/Internet literacy and Internet access (Choi & DiNitto, 2013), because BCBH requires webpage navigation skills and bulletin board postings and discussions with the moderators/facilitators and other participants. However, owing to rapidly expanding Internet access among older adults in general (Zickuhr & Madden, 2012) and the decreasing cost of electronic devices (e.g., netbooks, Chromebooks), the proportion of these older adults with Internet access is expected to grow in the future. Thus, BCBH holds more promise than face-to-face CDSMP as a feasible, low-cost means of chronic disease self-management support for low-income homebound older adults. However, no concerted effort has been made to improve participation by these older adults. The purposes of this pilot study were (a) to explore the feasibility of BCBH use among low-income homebound older adults who had no or limited computer literacy, focusing on the type of computer and Internet navigation skills training that may be needed to facilitate their BCBH participation; and (b) to measure health-related outcomes at 4 weeks after the completion of their participation (i.e., 10 weeks since BCBH workshop participation). The health outcomes of these older adults were compared with those of their age peers who had sufficient computer skills and participated in BCBH without any training from the study team. Considering the high personal and societal cost of uncontrolled chronic diseases and the strong evidence base of the BCBH, it was important to explore ways to facilitate its utilization among this population.
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METHODS
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Study Participants All 20 participants were recipients of Meals on Wheels (MOW) in a large Central Texas city, who were referred to the study by their case managers. The MOW program serves 2,100 homebound older adults (60% Black or Hispanic) daily, with more than 95% of them having income at or below 200% of the official poverty line (OPL). Referred older adults were screened by the first author via telephone using a brief questionnaire. Inclusion criteria were: English proficiency, ability to type, score > 8 on the 10-item Short Portable Mental Status Questionnaire (SPMSQ; Pfeiffer, 1975), and income at or below 200% of OPL. English proficiency was measured with two questions: “Do you read newspapers, magazines, or books in English?” and “Do you have any trouble understanding what you read in English?” Ability to type was measured with a question: “Are you able to type with any number of fingers?” With respect to computer skills, we deliberately sought the equal representation of (a) those without or with only limited computer skills (i.e., never a computer user or a past/current user with difficulty navigating/seeking online information: low-skill group); and (b) those with skills that were deemed sufficient for them to participate in the BCBH workshop without further computer skills training (i.e., current Internet user who can navigate/seek information with ease: high-skill group). The skill level among past/current users was determined based on (a) telephone screening questions about any Internet activities in which that they were engaged; and (b) a research assistant’s (RA) observation or test of their skills. Of the 37 individuals (30 women and 7 men) referred to the study between June 2012 and February 2013, 11 were screened out or declined participation during the telephone screening due to inability to type (n = 4), body pain/other health problems that would make it difficult to sit in front of computer two to three times a week (n = 3), out-of-town travel plans (n = 2), cognitive impairment (n = 1), and hospitalization of a loved one (n = 1). Twenty-six individuals completed baseline interviews and registered for the NCOA’s BCBH (placing their names on the interest list); however, 5 withdrew from the study before the workshop began because of health crises and loss of interest, and 1 dropped out after the first BCBH session because he disliked the amount of reading required. Twenty (10 each in low-skill and high-skill groups) completed their participation in all 6-week BCBH sessions and provided 4-week post-BCBH follow-up data. No significant difference in demographic characteristics was found between the 20 participants and the 17 nonparticipants or between the 10 low-skill participants and 10 high-skill participants. All 20 participants received a small monetary compensation ($30) for their study participation. The study was approved by the authors’ institutional review board.
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BCBH Registration and Enrollment of the Study Participants Of the low-skill participants, three had never owned and used a computer, two had occasionally used a computer in the apartment complex, and five had a computer at home. Regardless of their access to or ownership of a computer, all seven had only minimal computer/Internet skills (e.g., did not know how to access their email accounts and search and navigate webpages). Of the high-skill participants, nine owned a computer, and one had used a computer at a public library. To enable their participation in BCBH workshop, the study team loaned laptops with prepaid wireless cards to four (three low-skill and one high-skill) participants for the duration of their BCBH participation. The RA introduced all participants to the NCOA’s BCBH registration page and helped them create the BCBH user name and password and complete the BCBH consent form. For those in the low-skill group, the RA provided a cheat sheet and taught them basic computer and Internet operational skills (e.g., turning on and off, opening Internet Explorer, navigating, and creating and managing an e-mail account). The participants were asked to practice their computer/Internet operational skills, by using the cheat sheet and online training materials (e.g., Mousing Around) and by playing basic computer games (e.g., Spider Solitaire to practice touch pad and mouse use) prior to their workshop enrollment. Once a potential participant registered, the NCOA sent an invitation e-mail (usually in 1–3 weeks) to inform him or her of the BCBH start date and the enrollment URL. The participants were instructed to contact the RA upon receipt of the e-mail, so that the RA could help them complete their personal profile (including health status and a screen name to use during the workshop). Following the e-mail receipt, the RA met with each low-skill participant in his or her home for a second time to help them enroll, create the BCBH icon on the computer desktop for easy access to the website, and provide further computer/Internet skills training (e.g., how to use the BCBH tutorials). Each computer/Internet training session lasted 60–90 minutes. The RA was also present at their home for the first BCBH session of four low-skill participants at their request (either they felt that they were not confident enough to do it alone or they had problems logging in for the first session). Two low-skill participants requested further assistance when they encountered problems during the first week of the workshop. These additional training/assistance sessions lasted up to 30 minutes each. Nine high-skill participants completed the enrollment process and read the BCBH Tutorial by themselves. Only one needed help with the enrollment process due to a log-in problem. All participants were encouraged to use online training materials and the BCBH’s Help Center materials to solve any problems in navigating and understanding the content (e.g., using the Glossary chapter). All participants
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were also asked to record the number of times that they had logged in each week and any BCBH process-related difficulties they had encountered during navigation and posting. The RA made a 10-minute, weekly telephone call to each participant during the 6-week workshop to check the participant’s progress.
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Data Collection and Outcome Measures Data on feasibility were collected with (a) detailed observational field notes about computer/Internet skills deficit, training needs, and training efficacy that the RA compiled following each in-person visit or telephone call; (b) the short evaluation form that each participant filled out weekly to record the number of log-ins and any problems encountered; and (c) a semistructured open-ended questionnaire covering the participant’s experience, perceptions, and suggestions at 4 weeks after the completion of BCBH. At the time of the BCBH registration (baseline) and at 4 weeks after the completion of BCBH, participants were also given a short paper-form, self-report questionnaire developed by the Stanford Patient Education Research Center for the CDSMP participants (Stanford Patient Education Research Center, 2007) and the 9-item Patient Health Questionnaire (PHQ-9) assessing depressive symptoms (Kroenke, Spitzer, & Williams, 2001). The internal consistency reliability of the PHQ-9 for the study sample was .71 at baseline and .73 at 4week follow-up. The variables in the Stanford questionnaire were as follows: (a) demographics, (b) health status, (c) symptoms, (d) physical activities, (e) self-efficacy, (f) daily activities, and (g) medical care. DEMOGRAPHICS Demographics included date of birth, gender, race/ethnicity, highest year of school completed, and marital status. HEALTH
STATUS
Health status comprised the following: (a) checklist for chronic conditions and diseases (hypertension, diabetes, asthma, lung disease—emphysema, COPD, or other—heart disease, kidney disease, cancer, and others); and (b) global self-ratings of health on a 5-point scale (1 = excellent, 5 = poor). SYMPTOMS Symptoms (preceding 2 weeks) constituted: (a) four items on health-related distress (discouraged by health problems, fearful about future health, health a worry in your life, and frustrated by health problems) on a 6-point scale (0 = none of the time, 5 = all the time); and (b) visual numeric scales for
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fatigue, shortness of breath, and pain on an 11-point scale (0 = no problem, 10 = severe problem). The distress scale score is the mean of the four items (range = 1–5). The internal consistency reliability for the study sample was .84 at baseline and .64 at 4-week follow-up.
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PHYSICAL
ACTIVITIES
Physical activites (preceding week) involved six items on minutes per week spent doing the following exercises: stretching/strengthening exercise, walking, swimming/aquatic exercise, bicycling/stationary bicycling, working out on aerobic exercise equipment, and other aerobic exercise on a 5-point scale (0 = none, 4 = more than 3 hours per week). The combined minutes of any type of exercise were calculated in this study. SELF-EFFICACY Self-efficacy (present time) incorporated four items on the confidence level of keeping fatigue, physical discomfort/pain, emotional distress, and other symptoms of health problems from interfering with the things the participant wants to do; and two items on the confidence level of doing different tasks and activities needed to manage health conditions and doing things other than just taking medication to reduce daily effects of illness. All were measured on a 10-point scale (1= not at all confident, 10 = totally confident). The score for the scale is the mean of the six items (range = 1–10). The internal consistency reliability for the study sample was .84 at both baseline and 4-week follow-up. DAILY
ACTIVITIES
Daily activities (preceding 2 weeks) encompassed four items on limitations, due to health conditions, in social activities, hobbies/recreational activities, household chores, and errands and shopping. The score for the scale is the mean of the six items (range = 1–10). The internal consistency reliability for the study sample was .86 at both baseline and 4-week follow-up. MEDICAL
CARE
Communication with doctor covered three items on preparing a list of questions, asking questions, and discussing personal problems related to illness on a 6-point scale (0 = never, 5 = always); and four items on health care utilization (the number of visits to a physician and emergency department, number of times hospitalized, and the hospital location). The internal consistency reliability for the study sample was .67 at baseline and .85 at 4-week
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follow-up. Although the medical care section also included health care utilization (numbers of doctor visits, hospital emergency department visits, overnight hospital stay, and nights spent in the hospital), we did not include health care utilization in our 4-week postintervention follow-up assessment, given that the time period of the measures was “in the past 6 months.”
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Data Analysis The first author and the second author independently read and summarized the RA’s field notes and the participants’ written responses to the openended questions at 4-week postintervention follow-up, and then compared and discussed them to produce a final summary. For quantitative data analysis, descriptive pairwise t tests were used to compare baseline and 4-week postintervention follow-up scores in the domains of global self-ratings health, symptoms, physical activities, daily activity limitations, communications with doctor, and depressive symptoms. Independent groups t tests were used to compare the study participants by their initial computer skills level (i.e., lowskill group vs. high-skill group) and age group (i.e., ≤ 70 group vs. 71+ year group). Due to the small sample size, the study was not powered to conduct meaningful outcome analysis. However, the bivariate analysis results provided preliminary insights into possible changes in the participants’ states and perceptions related to these domains 4 weeks after the completion of the BCBH workshop.
RESULTS Sample Characteristics As seen in Table 1, the average age of the participants was 70 (SD = 6.54) years; they were 85% female; 35% were non-Hispanic White (n = 7) and 65% non-White (6 Blacks, 5 Hispanics, 1 Native American, and 1 Asian American); and they had, on average, 13.7 (SD = 2.15) years of education. The participants had, on average, 4.3 (SD = 1.67) chronic medical conditions and visited their physician 5.35 (SD = 3.73) times in the preceding 6 months. In addition, 25% of the participants visited emergency department and 15% was hospitalized in the preceding 6 months.
Computer Skills Deficits at the Outset Computer skills deficits common to all low-skill participants were: (a) unfamiliarity with the various function keys (Caps, Shift, Ctrl, Backspace, Del, Esc) on the keyboard; (b) difficulty using a touch pad, a mouse (including its wheel), and a cursor, mostly due to poor finger coordination; (c) losing
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TABLE 1 Participant Characteristics (N = 20)
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Characteristics
M ± SD or n (%)
Age (years), range (62−86) Age group (n, %) 62−70 71−80 81+ Gender (n, %) Female Male Race/ethnicity (n, %) Non-Hispanic White Black Hispanic Native American Asian American Marital status (n, %) Married Widowed Divorced/separate Never married Education (years), range (GED−18) No. of chronic medical conditions No. of physician visits,a range (2−16) Emergency department visita (n, %) Hospitalizationa (n, %) Type of BCBH workshop participated (n, %) General Arthritis Diabetes a
70.30 ± 6.54 12 (60.0) 6 (30.0) 2 (10.0) 17 (85.0) 3 (15.0) 7 (35.0) 6 (30.0) 5 (25.0) 1 (5.0) 1 (5.0) 2 (10.0) 7 (35.0) 9 (45.0) 2 (10.0) 13.70 ± 2.15 4.30 ± 1.67 5.35 ± 3.73 5 (25.0) 3 (15.0) 2 (10.0) 9 (45.0) 9 (45.0)
During the preceding 6 months.
a cursor on the screen; (d) confusion about single- versus double-clicking icons; (e) unfamiliarity with minimizing, maximizing, and closing windows; (f) unfamiliarity with moving pages up and down with the side scroll bar or mouse wheel; (g) unfamiliarity with drop-down menus; and (h) slow typing and typo correction.
Initial Skills Deficits Related to BCBH Website Navigation The problems that low-skill participants experienced during their BCBH registration and the workshop’s first week were: (a) creating user name and password for the BCBH secure website and often forgetting them (n = 5); (b) confusion between user name/password for their e-mail account and those for the BCBH workshop (n = 3); (c) making typing errors when inputting their user name and password and then being shut out from the log-in process (n = 8); (d) moving between and double-clicking tabs for different Centers (n = 8); (e) forgetting about posting their action plans (n = 2); (f)
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participating in the Discussion Center (n = 5); and (g) not being able to use and reply through Post Office (n = 2).
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Training Efficacy and Family Members’ Assistance For six low-skill participants, two sessions (60–90 minutes each) of basic computer skills training were sufficient for their successful participation in BCBH. The other four needed an additional training or trouble-shooting session that lasted up to 60 minutes. All of them reported that they practiced the Internet navigation skills on their own using the cheat sheet, and some also reported that they had received additional training from their family members (spouse, son, daughter, grandchild). By the second week of their BCBH participation, no one requested additional training, and all reported that they were comfortable with and enjoyed their BCBH participation, fully using the BCBH Centers and Post Office to communicate with other participants. For those who did not use Discussion Center and Post Office in the beginning, a simple reminder or encouragement from the RA during the weekly telephone call or the BCBH workshop facilitators worked effectively. Some participants reported that they were initially hesitant about posting their comments on Discussion Center and using Post Office due to “shyness” and “discomfort” about communicating with the other participants whom they had never met, but most became fully engaged by the second week. Although three participants stated that the reading materials were too dense to digest during the first week, they were able to go back and review the materials as their computer skills improved. All participants reported that they liked the reference book and used it extensively.
Four-Week Post-BCBH Quantitative Outcomes Table 2 shows that compared with the baseline scores, the 4-week postintervention follow-up scores on all outcome variables, with the exception of communication with doctors, were significantly improved. At baseline, 14 participants (70%) rated their health as fair or poor, and 6 (30%) rated it good or very good. At follow-up, only 4 (20%) rated it fair or poor and 16 (80%) rated it good or very good. No one rated it excellent at either time. The severity scores of fatigue and pain decreased by more than 30%; health distress score decreased by 60%; the self-efficacy (confidence) score increased by more than 30%. Exercise duration increased by more than 60%, and the PHQ-9 score decreased by 30%. The t tests found no significant difference in the follow-up scores between low-skill and high-skill participants. Further analysis found no age group (≤ 70 vs. ≥71 years) difference in follow-up scores in any of the outcome measures, although the older age group had significantly lower self-efficacy score at baseline (4.25 ± 1.81 vs. 6.33 ± 1.58 for the ≤ 70 group, t = 2.728, p = .01).
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TABLE 2 Comparison Between Baseline and 4-Week Follow-Up Scores
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Variable Self-rated health Symptoms (health-related distress) Fatigue Shortness of breath Pain Daily activity limitation Physical activities (in minutes) Median Range Self-efficacy (confidence) Communication with doctor PHQ-9 Range
Baseline
Follow-up
t value
3.80 ± 0.89 2.38 ± 1.24
2.85 ± 0.88 0.96 ± 0.80
4.254 5.200
