Design
The study used a concurrent mixed-methods [21], single-arm repeated measures feasibility design and was conducted from June 2016 to May 2017. Thirty-seven carers of older persons with ADRD living in LTC received access to MT4C-In Care over a 2-month period. Participants completed measures of hope [Herth Hope Index (HHI)], general self-efficacy [General Self Efficacy Scale (GSES)], loss and grief [Non-Death Revised Grief Experience Inventory (NDRGEI)], and HRQoL (SF12v2) at baseline, 1 month, and 2 months. At 1 and 2 months, carers also completed a MT4C-In Care checklist intended to evaluate MT4C-In Care for ease of use, feasibility, acceptability, and satisfaction. Qualitative open-ended interviews were conducted at 2 months and informed the interpretation of the quantitative data at the results stage of the study. Ethical approval was obtained from the University of Alberta Health Research Ethics Board (Pro00065220) and operational approval from Covenant Health Research Center.
Recruitment
Participants were recruited over a 2-month time period (January and February 2017) and involved several strategies. Participants from another study who consented to be contacted for future relevant studies and who had a family member with ADRD residing in LTC were contacted. Other forms of recruitment included newspaper advertisement in two cities in Alberta, the Alzheimer’s Society of Alberta & North-west Territories e-newsletter, and dissemination of study pamphlets to family carers attending the organization’s events. The pamphlets and newspaper advertisements encouraged interested carers to contact a 1–800 number or email if they were interested in participating. If participants met the eligibility criteria, then trained research assistants (RAs) obtained telephone consent to participate in the study.
Participants and setting
A sample of 40 participants was the target as this is considered sufficient for a feasibility study [22]. Inclusion criteria for study participants were as follows: (a) a family/friend of a person 65 years or older with ADRD residing LTC, (b) carers needed to be 18 years or older, (c) English speaking, and (d) needed to have internet access and a valid email account. All participants lived in Alberta, Canada.
Data collection procedures
RAs contacted potential participants to explain the study, screen carers for eligibility, and obtain telephone informed consent to participate in the study. All data collection took place over the telephone, with conversations being audio-recorded and ranging in length from 30 to 90 min. RAs directly entered quantitative and MT4C-In Care checklist data into RedCap, a secure online data collection system supported by the University of Alberta. Qualitative interview audio files were stored in a secure shared drive and transcribed verbatim, by an experienced transcriptionist. All files were anonymized by assigning a number to participants and removing any identifying information from the transcripts.
After consent was obtained, RAs collected demographic data and baseline measures (HHI, GSES, NDRGEI, and SF-12v2) from all participants. All participants then received access to MT4C-In Care and were instructed to use the site at their convenience for 2 months. At subsequent interviews (1 and 2 months), participants completed the same measures along with the MT4C-In Care checklist, which recorded information about participant usage of MT4C-In Care as well as its feasibility, acceptability, ease of use, and satisfaction. At 2 months, all participants were interviewed using semi-structured questions to gather feedback on MT4C-In Care. Figure 1 outlines the data collection procedures for the study.
My Tools 4 Care-In Care
After the first interview, participants received access to MT4C-In Care for a 2-month period. Research assistants e-mailed the participants’ sign-in information for the MT4C-In Care website, i.e., the website address and a unique username and password; participants were encouraged to change the password at the first log-in. All data entered into MT4C-In Care by participants were kept confidential, in that no one else was able to access their account, including the study team. As MT4C-In Care is a self-administered and flexible intervention tailored to individual use, participants were instructed to access whatever sections they wished and all directions needed for each section are part of the intervention.
Measures
Demographic form
A demographic form was completed by all participants at baseline. Information collected included age, gender, marital status, employment status, ethnicity, income, religion, medical condition, and level of education. Information on the care recipients’ age, gender, and length of time in LTC was also collected.
Herth Hope Index
Hope was measured using the HHI, which features a 12-item Likert-type scale [23] with items scored from 1 “strongly disagree” to 4 “strongly agree.” Total scores range from 12 to 48 with higher scores indicating greater hope. The items in the scale can be further divided into three factors: (a) temporality and future, (b) positive readiness and expectancy, and (c) interconnectedness. The HHI has been used in a variety of populations and has a test-retest reliability of 0.91 (p < 0.05) and criterion-related validity r of 0.81 to 0.92 (p < 0.05) [23].
General Self-Efficacy Scale
The GSES is a 10-item, 4-point scale with a Cronbach’s alpha coefficient of reliability ranging from 0.76 to 0.90 (p < 0.05) [24]. The scale assesses a person’s perceived self-efficacy or their belief that they can complete novel or difficult tasks or cope with diversity. Total scores range from 10 to 40 with higher scores indicating a greater level of self-efficacy.
Non-Death Revised Grief Experience Inventory
The NDRGEI is a scale measuring the grief experiences of persons anticipating a loss through four domains: (a) existential concerns, (b) depression, (c) tension and guilt, and (d) physical distress [25]. The NDRGEI is a reliable tool (alpha = 0.93) and consists of 22 items scored on a 6-point Likert scale from slightly disagree to strongly agree, where higher scores are indicative of lower grief responses [26].
The 12-item Short-Form Health Survey
The SF-12v2 is the short version of the SF-36 and is a widely used measure of health-related quality of life [27]. The SF-12v2 measures two components of HRQoL: (a) physical health and (b) mental health. Scores range from 0 to 100 with a mean score for the US population of 50 (SD = 10). Higher scores indicate better HRQoL. The SF-12v2 physical component summary (PCS) and mental component summary (MCS) scores strongly correlate with the SF-36, at r = 0.95 and 0.97, respectively, and have a good estimated test-retest reliability (PCS: r = 0.89; MCS: r = 0.76) [28].
MT4C-In Care Checklist
This checklist consisted of two parts: (a) use of MT4C-In Care and (b) evaluation of MT4C-In Care. Participants were asked to track their use of MT4C-In Care (i.e., the content accessed and approximate time spent in minutes, at 1 and 2 months). The checklist consists of six Likert-type questions asking participants to rate their agreement with statements from “fully disagree” to “fully agree” regarding the ease of use, feasibility, and acceptability of MT4C-In Care. It also includes a Likert scale to rate overall satisfaction with MT4C-In Care and two qualitative questions asking participants for feedback (“What worked well in MT4C-In Care?” and “What would you do to improve MT4C-In Care?”). The checklist has been used by the authors in previous research [29].
Qualitative interviews
The qualitative interview guide, developed by the research team and used in previous research [30], consists of seven open-ended questions intended to evaluate MT4C-In Care. Questions included “What were you thinking about when you worked on MT4C-In Care?”, “Did it help you deal with your significant changes? Why or why not?”, “Did anything influence your ability to work on MT4C-In Care?”, “Who do you think would benefit most from MT4C-In Care?”, “What did you like best?”, “What did you like least?”, and “Anything else you would like to add?”
Data analysis
Data were analyzed to meet the study objectives of evaluating MT4C-In Care for feasibility, acceptability, ease of use, and satisfaction and to obtain preliminary data on the effectiveness of MT4C-In Care with respect to improving hope, general self-efficacy, and HRQoL and decreasing loss and grief in carers of persons with ADRD residing in LTC.
Quantitative data were checked for accuracy and analyzed using SPSSv24. Descriptive statistics were used to report participants’ demographic characteristics and responses from the MT4C-In Care checklist (feasibility, acceptability, ease of use, and satisfaction). To determine preliminary effectiveness, a repeated measures ANOVA was completed to assess whether changes were present in participants’ HHI, GSES, NDRGEI, and SF-12v2 scores from baseline to 2 months. Because this was a preliminary analysis with a small sample size, co-variates were not used and post hoc analysis was not conducted.
Qualitative data were analyzed using Sandelowski’s [31] descriptive analysis. Each transcript was read, looking for similarities, differences, and patterns in the data and labeling with codes that were then grouped into themes. NVivo 11 software was used to manage and support analysis of the study data. Trustworthiness of the data was maintained by word for word transcriptions that were checked by reviewing audiotapes and ensuring that codes remained data-driven. Audit trails were kept regarding coding decisions through a coding journal. Qualitative data informed the quantitative data in the results stage.