BACKGROUND
Psychosocial interventions have been delivered to caregivers of persons with advanced cancer. Various materials and methods of delivering psychoeducational interventions have been employed, including written materials and guidebooks, video, telephone follow-ups, and online forums. Most studies used a cocktail of delivery methods, but none evaluated the individual components.
Although the use of video as a method of content delivery is currently less common compared to written materials and guidebooks (Hudson et al., Reference Hudson, Aranda and Hayman-White2005; Washington et al., Reference Washington, Dermiris and Oliver2012), studies have found that it has much potential as a content delivery tool. Some authors have hypothesized that this could be attributed to people's preference for the visual and audio aspects of a video (Duggleby et al., Reference Duggleby, Wright and Williams2007; Gallagher-Thompson et al., Reference Gallagher-Thompson, Wang and Liu2010; Williams et al., Reference Williams, Bishop-Fitzpatrick and Lane2010). The effectiveness of video can be especially enhanced if tailored specifically to the caregiver population (Gallagher-Thompson et al., Reference Gallagher-Thompson, Wang and Liu2010). When participants can identify with the video, learning through modeling can take place. Hence, there could be further exploration on the use of video as a content delivery tool.
Telephone follow-up has been utilized to enhance teaching after the face-to-face sessions (Hudson et al., Reference Hudson, Aranda and Hayman-White2005; Washington et al., Reference Washington, Dermiris and Oliver2012), to provide emotional support for caregivers (Kilbourn et al., Reference Kilbourn, Costenaro and Madore2011), to discuss challenges and barriers faced, and to provide further training (Williams et al., Reference Williams, Bishop-Fitzpatrick and Lane2010). Telephone calls are convenient for caregivers, as they are often too busy and might not have time for face-to-face sessions.
Caregivers desire support from both formal sources and other current caregivers (Harding et al., Reference Harding, Epiphaniou and Hamilton2012). There has been an increasing use of online media to assist in providing emotional and informational support for caregivers who are unable to meet in person due to their caregiving responsibilities (Klemm & Noland, Reference Klemm and Noland1998). Thus, an online forum could possibly be a convenient way in which caregivers could provide support for one another.
In our six-week psychoeducational intervention, a “Caring for the Caregiver Program” (CCP) for caregivers of a person with advanced cancer, three components were evaluated: (1) a 23-minute video clip; (2) two telephone follow-ups at three-week intervals; and (3) an invitation to participate in an online social support forum. The details of the CCP can be found in the study by Leow and colleagues (Reference Leow, Chan and Chan2015). Upon evaluation post-intervention at week 8, caregivers who underwent the CCP reported enhanced quality of life, greater satisfaction with social support, an increased number of supported people, greater closeness with patients, improved self-efficacy in self-care, greater rewards of caregiving, increased knowledge, and lower stress and depression.
Our study aimed to evaluate caregivers' perceptions of a video, telephone follow-up, and an online forum as components of a psychoeducational intervention using a qualitative approach. A better understanding of how the individual components of a psychoeducational intervention could benefit caregivers, of the strengths and limitations of each component, and of caregivers' preferences could help guide the development of future interventions.
METHOD
Design
A qualitative interpretive design with semistructured individual face-to-face interviews was employed. Caregivers were asked about their perception of the components two weeks post-intervention.
Sample
A purposive sample was used, and participants were recruited until data saturation. Both new and experienced caregivers were recruited. Only caregivers who were eligible for the study were referred by hospice nurses to receive the CCP. The participant inclusion criteria were: (1) they were a family caregiver of a person with advanced (stage IV) cancer receiving home hospice care; (2) there was a prognosis of at least 3 months based on the prognosis offered by the primary physician; (3) they spent at least 20 hours per week with the patient (to ensure that they were personally involved in the caring for the patient, as some families relied on domestic helpers in their local context); (4) they were able to understand and communicate in English; and (5) they were above 21 years of age (so as to be considered an adult in Singapore). Domestic helpers (foreign non-nursing trained workers hired to live in a patient's home and provide physical care) were excluded.
A total of 38 caregivers received the CCP, and 28 completed the 6-week intervention program. A total of 10 caregivers did not complete the program, as the patient they were caring for passed away (n = 8), or they were busy (n = 2). Of the 28 caregivers, 12 were recruited into our study. All 28 caregivers were invited to take part in a face-to-face interview, and 12 agreed to do so. The reasons for declining an interview included being too busy with caregiving and being unwilling for the interview to be audiotaped.
Data Collection
The study was conducted from September of 2012 to May of 2015. Family caregivers were recruited from four home hospice organizations (HCA Hospice Care, Metta Hospice, Singapore Cancer Centre, and Agape Methodist Hospice) and the National Cancer Centre outpatient clinic in Singapore. The home hospice organizations provide free-of-charge home palliative care services for patients with advanced cancer who have a prognosis of less than a year and for members of their family (Agency for Integrated Care, 2009).
An interview guide with open-ended questions was developed to facilitate semistructured interviews:
-
1. What was your perception of the
-
■ video
-
■ telephone follow-up
-
■ online forum
-
-
2. Which component did you find most/least useful?
A single researcher conducted all the interviews to prevent any potential bias. The average length of interviews was 45 minutes. The researcher probed further into patients' responses after asking the open-ended questions. Caregivers' sociodemographic characteristics included gender, age, marital status, and relationship to the patient.
Data Analysis
Qualitative interviews were transcribed verbatim, and transcripts were coded and analyzed using content analysis (Thorne et al., Reference Thorne, Kirkman and O'Flynn-Magee2004). Two members were involved in the four-step data analysis process. First, each member individually read a transcript and coded the units related to the research question. Second, the coding for each unit was created in relation to the text. Third, interpretations of the codes were formed into category groups. Finally, the categories were grouped into themes. The themes then were compared between both researchers, and agreement was reached on major themes by discussion and consensus.
Caregivers' preferences for method of intervention delivery was calculated based on their response to question no. 2 in the interview guide: “Which component did you find most/least useful?”
Ethical Considerations
Ethics approval was sought from the National University of Singapore Institutional Review Board (NUSIRB: 11–352) and Singhealth's Centralized Review Institutional Review Board (CRIB: 2012/495/A).
RESULTS
Participants
Two-thirds of participants were females (n = 8). Their ages ranged from 22 to 67 (mean = 50.50, SD = 11.53). About two-thirds were married (n = 7). Most participants were caring for a parent (n = 10), one for a spouse, and one for her mother-in-law. Two participants had a secondary school education, five had a diploma education, and five had a university degree. Some 10 of the 12 participants had a monthly household income of less than SGD 2,500.
Overall Evaluation of Delivery Methods
Ten participants found the video (83.33%) to be most useful, and two (16.67%) preferred the telephone follow-up. A third of participants (n = 4, 33.33%) chose the online forum, and two (16.67%) chose the telephone follow-up as being least useful. Six (50.00%) participants did not find any component to be least helpful.
Video
Most participants said that they could “identify with the scenes in the video,” relating to the frustrations the caregiver in the video was experiencing, which helped them to understand their own emotions and learn to better cope with them. The “visual and audio effects of video” enabled them to “see” what the patient was going through, which helped them to understand patients better:
Now I understand that this [the patient's behavior] is part of the symptoms of cancer advancement, and so we will learn to cope with it. If I had not seen the video, I may not fully comprehend and understand what sort of pain the cancer patients are going through. The doctor did mention about pain, but it is not the same as looking at a video and really understanding it. (CG 10)
Telephone Follow-Up
Telephone follow-up served as a channel for “emotional and informational support” for most caregivers. They appreciated talking to a healthcare professional, who could advise them on how to provide physical care, and who had provided care for caregivers in similar situations. Caregivers also wanted their own presence to be acknowledged, as the focus of healthcare professionals was mostly on patients:
It's good to have someone share some information, and then learn from each other. And also partly because you have a nursing background, so when I talk, you can understand what I'm saying. I can also get some tips from you as well, or a confirmation that what I'm doing is correct. (CG 1)
The follow-up was good, because I feel that there should be somebody to tell you, “Hey look. It's okay.” “We [the hospice staff] are also here for you.” — That kind of thing. Because sometimes as caregivers, people forget them, as all the attention is on the patient. (CG11)
Online Forums
Although some participants agreed that the concept of an online forum was useful, most did not participate in one. The main barriers cited were: (1) that caregivers were “too busy” and did not have time to visit a forum; (2) that there were “difficulties with accessing the webpage,” as they were not computer savvy or were seldom on the internet; and (3) that they “did not feel comfortable sharing with strangers on an online platform”:
If a person is always attached to a computer, always going and browsing around, the forum would be good. But I am not that kind [of person]. I am mobile. I am always running around, and I am not carrying an iPad. Otherwise, the forum can be good. (CG 8)
I think it [the online forum] should be useful. But it also boils down to personality. I'm not inclined to go online and talk to strangers. (CG 12)
DISCUSSION
Participants in our study favored the use of video. They liked the visual and audio aspects of the video, which enabled them to have a better understanding of themselves, of the caregiver experience, and of the plight of patients. Research studies have also found that fusion of visual and audio information can enhance learning (Ngiam et al., Reference Ngiam, Khosla and Kim2011). Although studies (Duggleby et al., Reference Duggleby, Wright and Williams2007; Gallagher-Thompson et al., Reference Gallagher-Thompson, Wang and Liu2010; Williams et al., Reference Williams, Bishop-Fitzpatrick and Lane2010) have found that a video-based intervention had a positive impact on participants, no study has evaluated participants' perspectives on the video as a program delivery tool. Our study suggests that the video could be an ideal tool for delivery of subject content. Future intervention studies could consider using video as an intervention delivery tool.
Most participants welcomed telephone follow-ups. During interviews, caregivers reported that telephone calls from the hospice staff usually revolved around the patient and that there was little concern for the caregivers. They thus found calls that focused mainly on caregivers to be very supportive, as they enabled them to share their problems. Two studies that evaluated the use of telephone support found that caregivers had reduced depression and lower levels of despair and disorganization, despite the deterioration in patients' conditions (Kilbourn et al., Reference Kilbourn, Costenaro and Madore2011; Walsh & Schmidt, Reference Walsh and Schmidt2003). They attributed the outcomes to caregivers being able to share their emotions and problems through the telephone follow-ups. Participants also found the telephone follow-ups useful, as they could ask questions regarding caregivers and resolve their doubts about provision of care. This concurred with the literature that emphasized the use of a telephone follow-up to evaluate plans and offer caregivers reminders about self-care (Hudson et al., Reference Hudson, Aranda and Hayman-White2005). Hence, telephone follow-ups could be useful in enhancing the effectiveness of an intervention.
Caregivers desired social support from other caregivers, and social support was found to be the main factor that influenced caregiver quality of life (Leow et al., Reference Leow, Chan and Chan2014). Hence, the intention of the online forum was to provide a platform where caregivers could support each another, given their time constraints and inability to attend face-to-face meetings. However, the online forum was not received well by caregivers in our study. The literature suggests that, although participants from the Baby Boomer generation know how to use computers and the internet, they do not favor using it in this context (Rodriguez et al., Reference Rodriguez, Green and Ree2003). Similarly, the caregivers in our study also expressed difficulties and inconveniences in accessing the online forum, as they spent little time on the computer.
The literature has also suggested that older people, people with lower education, and those with a lower income status are less inclined to use the internet (Bucy, Reference Bucy2000). The participants in our study had comparatively higher levels of education (16.7% secondary education and 83.3% tertiary education) compared with the national average (25.5 and 38.1%, respectively). However, 10 of 12 participants had a household income that was less than the national average of SGD 2,500 per month (Trade Chakra, 2008). The higher age and lower income of participants in our study could have also influenced the use of the online forum.
Another possible barrier to use of the online forum is that Singaporeans believe that problems should be solved within the family, and that seeking help from others can result in loss of “face” (Ow, Reference Ow and Chua1999). Thus, cultural differences related to how to handle personal issues might have influenced participants' preferences for seeking help from an online forum.
LIMITATIONS
A quantitative rating of caregivers' preference and satisfaction of each component was not obtained in our study, which could have enabled us to quantify caregivers' preferences for each component.
IMPLICATIONS FOR PRACTICE AND RESEARCH
Our study suggests that the video component could be an ideal tool for delivery of subject content for future intervention studies. Telephone follow-ups could also be utilized to provide information and psychosocial support and to enhance the effectiveness of an intervention. During conversations with caregivers, nurses need to demonstrate caring and concern for the caregivers and not solely focus on the patient's condition.
Future interventions could explore other methods of enabling caregivers to receive support from other caregivers and improve their support system. The use of widely popular mobile phone applications could also be explored, and their portability might prove to be beneficial.
CONCLUSION
Our study has evaluated the intervention delivery methods used in the Caring for the Caregiver Program. The video component is a useful tool for intervention delivery, and telephone follow-ups can be employed to provide informational and psychosocial support to caregivers. In addition, the online forum as a platform for sharing information and providing support was not received well by our study population.
FUNDING
This study was funded by the Lien Centre for Palliative Care (WBS: R-545-000-050-720).
CONFLICTS OF INTEREST
The authors state that they have no conflicts of interest to declare.
