Introduction
Many of the 750,000 people in the United Kingdom with dementia are cared at home by a relative or friend (Alzheimer's Society, 2011). Carers of people with dementia (PwD) frequently report feelings of social isolation and inadequate social support (Stoltz et al., Reference Stoltz, Udén and Willman2004) and the risk of anxiety and depressive disorders is increased (Schulz and Martire, Reference Schulz and Martire2004). Furthermore, these negative outcomes are correlated with the level of cognitive impairment as well as behavioral disturbance in the person with dementia (Schoenmakers et al., Reference Schoenmakers, Buntinx and Delepeleire2010). Contextual factors are also important in experiences of social isolation, with lower socioeconomic status and poorer formal support for the person with dementia related to greater social isolation (Robison et al., Reference Robison, Fortinsky, Kleppinger, Shugrue and Porter2009). Older carers’ physical health (Schulz and Martire, Reference Schulz and Martire2004) and mortality (Schulz and Beach, Reference Schulz and Beach1999) can also be affected, which can in turn compromise their ability to care for the person with dementia.
A range of interventions for carers of PwD exist to mitigate these problems (Sörensen et al., Reference Sörensen, Pinquart, Habil and Duberstein2002). The present review is concerned with psychosocial information and communication technology (ICT) interventions aimed at providing information and improving the carer's wellbeing and coping skills (e.g., psychoeducational interventions and support groups) rather than interventions aimed at reducing the objective amount of care provided by carers (e.g., interventions that improve the patient's competence in daily activities).
Uptake of traditional dementia services, both for PwD and carers, has been low; furthermore, carers of PwD show great interest in support services other than traditional face-to-face support groups, for example, telephone support, newsletters, and interventions delivered on computer (Colantonio et al., Reference Colantonio, Cohen and Pon2001). Such nontraditional interventions can be similar in content to traditional interventions, but vary in their format. For example, face-to-face educational sessions can also be delivered on video or DVD (see, e.g., Gant et al., Reference Gant, Steffen and Lauderdale2007). Nontraditional media also open up a range of possibilities for carer support. For example, internet support groups can help individuals physically distanced from one another, 24 hours a day and seven days a week. This is particularly helpful for individuals who are physically isolated or experiencing rare or stigmatized conditions (White and Dorman, Reference White and Dorman2001). The current review will focus on one form of nontraditional intervention—computer-mediated psychosocial interventions.
Previous reviews
There have been three previous reviews of this area. Powell et al. (Reference Powell, Chiu and Eysenbach2008) conducted a systematic review of networked technologies supporting informal carers of PwD. They identified 15 papers that described five different multifaceted interventions. They found that the interventions had inconsistent outcomes, but suggested that they had moderate effects on improving carer stress and depression. Treatment effects varied with carer characteristics such as ethnic group, formal support, and baseline burden. This review was published as a brief descriptive report, and its evaluation of studies was therefore limited. In addition, with the rapid development of the internet and other computer technologies, it now requires updating.
A more recent French review (Wu et al., Reference Wu, Faucounau, de Rotrou, Riguet and Rugaud2009) looked at studies of information and communication technology interventions supporting carers of PwD. Sixteen papers concerning nine intervention programs (internet and telephone interventions) were described, without a critical analysis or comparison of studies, and with limited conclusions drawn.
Godwin et al. (Reference Godwin, Mills, Anderson and Kunik2013) conducted a systematic review with the aim of ascertaining the psychosocial effects of technology-driven interventions for informal carers of PwD. Eight papers were evaluated. This review only included RCTs and excluded interventions that only used CDs. All the studies reviewed showed positive outcomes, but there was considerable variability in the content and delivery of interventions, as well as inconsistency in measurement and variability of outcome.
Aims of this review
Computer-mediated intervention for carers of PwD is a growing area and a wide range of interventions have been developed. In order for future interventions to be maximally effective, and to ensure that service providers are aware of the strengths and weaknesses of different interventions, it is important that the current evidence base be evaluated. The present review therefore aims to address the question: How effective are computer-mediated psychosocial interventions for informal carers of PwD?
Method
Inclusion and exclusion criteria
The inclusion criteria were:
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1. The intervention must be computer mediated. This could include DVDs, CD-ROMs, the internet, or computer programs, but excludes interventions that exclusively use the telephone. The intervention does not need to exclusively be computer mediated, but that must be its main component.
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2. Interventions must be psychosocial interventions, including therapy, professional, or peer support programs, educational or information programs.
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3. The carers must be informal, that is, they must not be paid carers such as nursing home staff. However, the PwD can be resident either at home or in an institution.
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4. Studies must include dementia as the diagnosis of the person being cared for, but do not have to be limited to dementia. All types and all stages of dementia were included.
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5. Studies must use at least one quantitative measure to assess the outcome of the intervention. These measures do not need to be standardized, and can be questionnaires asking for users’ views of the effects of the intervention. Studies using only questionnaires that consider features of the intervention, such as its convenience, user-friendliness, or accessibility, were excluded.
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6. Studies can be randomized-controlled trials, pre- and posttest studies with or without a control group, or posttest-only studies with or without a control group. Case studies and qualitative research were excluded.
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7. Studies must be published in peer reviewed journal articles, in English, from January 2000 to September 2012. The lower limit was chosen because the review focuses on current technologies.
Search strategy
Search terms were organized into four conceptual areas:
computer* OR DVD* OR internet* OR network* OR technolog* OR ICT OR online* OR CD-ROM*
AND
intervention* OR train* OR therap* OR support* OR treatment*
AND
carer* OR caring * OR caregiv* OR family* OR families* OR parent* OR mother* OR father*
AND
dement* OR Alzheimer*
Grey literature was not searched. Searches of PsychINFO, MEDLINE, and CINAHL Plus databases generated 262, 708, and 248 papers, respectively. After de-duplication, there were 948 papers of which the titles and abstracts were examined, out of which 31 papers seemed that they might potentially fulfill the inclusion criteria; the full texts of these were then read in full by the first and third authors (see Figure 1 for PRISMA flowchart).
Flow diagram of studies included and excluded.
Seventeen of these 31 papers were excluded. Seven were excluded because the intervention was not computer mediated, four because the evaluation of the intervention was limited to anecdotal reports, qualitative interviews, and/or usage or intervention acceptability information, one was a literature review, one was a description of an intervention, one was a research proposal, one was a study of the relative importance of intervention elements such as social support, one was a meta-analysis, and one investigated whether older carers were able to complete standardized questionnaires. There were queries about four papers’ eligibility, and in these instances, the second author was consulted in order to reach consensus.
This left 14 papers for review. In two instances, two papers reported results from the same study (Glueckauf and Loomis, Reference Glueckauf and Loomis2003; Glueckauf et al., Reference Glueckauf, Ketterson, Loomis and Dages2004; Chiu et al., Reference Chiu2009; Chiu and Eysenbach, Reference Chiu and Eysenbach2010). So, at this point, 12 studies were identified for review. For clarity, when these studies are referred to, Chiu et al. (Reference Chiu2009) and Glueckauf et al. (Reference Glueckauf, Ketterson, Loomis and Dages2004) will be cited.
Reference lists from the included papers, as well as from Powell et al. (Reference Powell, Chiu and Eysenbach2008) and Wu et al. (Reference Wu, Faucounau, de Rotrou, Riguet and Rugaud2009), were examined to see whether any additional papers were eligible. This led to four further papers being examined, yielding two additional papers (Magnusson et al., Reference Magnusson, Hanson and Nolan2005; Marziali and Donahue, Reference Marziali and Donahue2006). The reference lists of these papers were also searched, leading to one further paper being examined, but no further studies identified. Sixteen papers, representing 14 empirical studies were evaluated.
Study quality
The quality of studies was evaluated using a modified version of Downs and Black's (Reference Downs and Black1998) checklist for the assessment of the methodological quality both of randomized and nonrandomized studies of health care interventions. In light of the nature of the studies being evaluated, several items on the checklist were not relevant (items 8, 13, 14, and 19), and were therefore excluded from the assessment. For example, item 14 asked whether any attempt was made to blind study subjects to the interventions that they received, which is not relevant for most psychological intervention studies. Each study could achieve a score of between 0 and 24, with higher scores indicating better quality. Scores of 0–8 were considered to indicate studies of low quality; 9–16 as medium quality, and 17–24 as high quality.
Results
Table 1 summarizes the 14 studies evaluated. Several used mixed methods; the present review only addresses their quantitative components.
Study characteristics
^All findings reported in this table were statistically significant at p < .05, with the exception of Lewis et al. (Reference Lewis, Hobday and Hepburn2010) and Magnusson et al. (Reference Magnusson, Hanson and Nolan2005), who reported only descriptive statistics, as well as Torp et al. ’s (Reference Torp, Hanson, Hauge, Ulstein and Magnusson2008) measure of forum usage, and Gallagher-Thompson et al.’s (Reference Gallagher-Thompson2010) program evaluation questionnaire, which were both evaluated using descriptive statistics.
*i.e. sample size at the start of the study, before any participants dropped out.
†The quality of each study was evaluated using a modified version of Downs and Black's (Reference Downs and Black1998) checklist for the assessment of the methodological quality of both randomized and nonrandomized studies of healthcare interventions. Each study could achieve a score of between 0 and 24, with higher scores indicating better quality. Scores of 0–8 were considered to indicate studies of low quality; 9–16 as medium quality, and 17–24 as high quality.
BSFC = Burden Scale for Family Caregivers (Gräsel et al., Reference Gräsel, Chiu and Oliver2003); CAI = Caregiver Appraisal Inventory (Lawton et al., Reference Lawton, Kleban, Moss, Rovin and Glicksman1989); CES-D = Center for Epidemiologic Studies-Depression scale (Radloff et al., Reference Radloff1977); CHHBS = Caregiver Health and Health Behaviours Scale (Posner et al., Reference Posner, Jette, Smith and Miller1993); CSES = Caregiving Self-Efficacy Scale (Steffen et al., Reference Steffen, McKibbin, Zeiss, Gallagher-Thompson and Bandura2002); CSI = Caregiver Strain Instrument (Bass et al., Reference Bass, McClendon, Flatley-Brennan and McCarthy1998); FFCS = Family and Friendship Contacts Scale (Andersson, Reference Andersson1984); GHQ-20 = General Health Questionnaire 20 (Goldberg and Williams, Reference Goldberg and Williams1991); HSQ-12 = Health Status Questionnaire 12 (Pettit et al., Reference Pettit, Livingstone, Manela, Kitchen, Katona and Bowling2001); ISSB = Inventory of Socially Supportive Behaviours (Barrera et al., Reference Barrera, Sandler and Ramsay1981); MSPSS = Multidimensional Scale of Perceived Social Support (Zimit et al., Reference Zimit, Dahlem, Zimit and Farley1988); PAC = Positive Aspects of Caregiving (Tarlow et al., Reference Tarlow, Wisniewski, Belle, Rubert, Ory and Gallagher-Thompson2004); PMS = Pearlin Mastery Scale (Pearlin and Schooler, Reference Pearlin and Schooler1978); PREP evaluation questionnaire (Archbold et al., Reference Archbold, Steward and Miller1995); Revised UCLA Loneliness Scale (Russel et al., Reference Russel, Peplau and Cutrona1980); RMBPC = Revised Memory and Behaviour Problems Checklist (Teri et al., Reference Teri, Truax, Longsdon, Uomoto, Zarit and Vitaliano1992); RSS = Relative Stress Scale (Greene et al., Reference Greene, Smith, Gardiner and Timbury1982); RWC = Revised Ways of Coping (Vitaliano et al., Reference Vitaliano, Russo, Carr, Maiuro and Becker1985); SMAF = Functional Autonomy Measurement System (Hébert et al., Reference Hébert, Durand and Dubuc2003); SRGS = Stress-related Growth Scale (Parke et al., Reference Parke, Cohen and Murch1996);
SSCQ = Short Sense of Competence Questionnaire (Vernooij-Dassen et al., Reference Vernooij-Dassen, Felling, Brummelkamp, Dauzenberg, Van der Bos and Grol1999); STAI = State Trait Anxiety Inventory (Spielberger et al., Reference Spielberger, Gorsuch, Lushene, Vagg and Jacobs1985).
Interventions
The interventions were varied; many had multiple components. In nine studies, with quality scores ranging from 5 to 20, the intervention was either primarily or entirely delivered as an internet program or resource. One high quality study used a computer-mediated automated interactive voice response intervention; two, of high and medium quality, used a computer–telephone integration system; one of high quality used a DVD program; and one low quality study used computer-, but not internet-, based education. In eight studies, the main part of the intervention was education; three combined education with professional therapy or support; two combined education with more general support; one compared education and professional support with education and more general peer support.
Their aims tended to be to reduce carer distress and increase competence in caregiving. One aimed to enhance family participation in nursing home care (Rosen et al., Reference Rosen, Mittal, Mulsant, Degenholtz, Castle and Fox2003). Five studies were labeled as pilot or feasibility studies (Rosen et al., Reference Rosen, Mittal, Mulsant, Degenholtz, Castle and Fox2003; Marziali and Donahue, Reference Marziali and Donahue2006; Marziali and Garcia, 2006; Torp et al., Reference Torp, Hanson, Hauge, Ulstein and Magnusson2008; van der Roest et al., Reference Van der Roest, Meiland, Jonker and Dröes2010) and some that were not described as pilots nonetheless involved the development of a new intervention (e.g., Glueckauf et al., Reference Glueckauf, Ketterson, Loomis and Dages2004; Chiu et al., Reference Chiu2009).
Six papers described interventions that included the ongoing involvement of a professional, six described interventions that did not, with one paper comparing an intervention including a professional with one that did not. Magnusson et al. (Reference Magnusson, Hanson and Nolan2005) was unclear about the level of professional involvement. In only one study did it seem that the intervention was continued after it was evaluated (Torp et al., Reference Torp, Hanson, Hauge, Ulstein and Magnusson2008). This is surprising, given that a benefit of computer-mediated interventions, particularly internet interventions, is that they can be used on an ongoing basis. Individual interventions varied in terms of the amount and frequency of input over the time period that they were offered. In most cases, carers knew the diagnosis of the care recipient but studies were not excluded if they did not.
Study designs
Six studies were randomized controlled trials, one was a controlled trial, four used a single group pretest posttest design, two used a single group posttest-only design, and one used a two group pretest posttest design. Initial sample sizes ranged from 18 (Rosen et al., Reference Rosen, Mittal, Mulsant, Degenholtz, Castle and Fox2003) to 329 (Beauchamp et al., Reference Beauchamp, Irvine, Seeley and Johnson2005), attrition rates ranged from 0% (Rosen et al., Reference Rosen, Mittal, Mulsant, Degenholtz, Castle and Fox2003; Marziali and Garcia, Reference Marziali and Garcia2011) to 42% (Marziali and Donahue, Reference Marziali and Donahue2006), although several studies did not report them. Although a number of papers compared the characteristics (such as age and baseline depression score) of those who dropped out with those who did not, only one presented an intent-to-treat analysis (Chiu et al., Reference Chiu2009) and one interpolated 18 months follow-up scores where data were available (Eisdorfer et al., Reference Eisdorfer2003).
No study provided a power calculation, and several authors noted that their study was likely to be underpowered. Several small studies used mixed-methods designs (e.g., Magnusson et al., Reference Magnusson, Hanson and Nolan2005; Torp et al., Reference Torp, Hanson, Hauge, Ulstein and Magnusson2008). Reporting of follow-up periods was often not present or was ambiguous, raising questions as to long-term impact; only Mahoney et al. (Reference Mahoney, Tarlow and Jones2003) and Eisdorfer et al. (Reference Eisdorfer2003) described follow-up periods that extended beyond the end of the intervention.
Measures
Most studies used multiple outcome measures, which is important in order to capture the range of possible impacts on carers. In several, however, multiple measures were used but only certain outcomes were reported, and in some cases, only certain components of measures used were analyzed (e.g., Marziali and Donahue, Reference Marziali and Donahue2006; Finkel et al., Reference Finkel, Czaja, Schulz, Martinovick, Harris and Pezzuto2007). It was also not always made explicit why certain measures were chosen. There is a question in the wider literature as to what constitutes effectiveness, and Magnusson et al. (Reference Magnusson, Hanson and Nolan2005) call for meaningful, realistic outcome measures with a clearer conceptual link with the intervention aims. In some studies, this link was somewhat tenuous. For example, Rosen et al.'s (Reference Rosen, Mittal, Mulsant, Degenholtz, Castle and Fox2003) intervention aimed to increase family participation in nursing home care, but assessed carers’ knowledge of dementia.
Outcome domains
Studies used a wide range of carer self-report measures to evaluate interventions, and most used more than one outcome measure. The review of findings of studies is grouped according to outcomes measured, and consequently the same study may be reviewed in more than one section.
Mood and mental health
Eight studies used measures of carer mental health, including measures of depression, anxiety, and general mental health.
Depression
Seven studies measured depression. All used variants of the Center for Epidemiologic Studies Depression Scale (CES-D; Radloff, Reference Radloff1977). Four high quality studies found either an improvement in CES-D score (Eisdorfer et al., Reference Eisdorfer2003; Beauchamp et al. Reference Beauchamp, Irvine, Seeley and Johnson2005), or partial effects on depression, in terms of finding an effect on a subscale, or among a subgroup of participants (Mahoney et al., Reference Mahoney, Tarlow and Jones2003; Gallagher-Thompson et al., Reference Gallagher-Thompson2010). Three medium quality studies found either no main effect on depression (although post-hoc effects) (Finkel et al., Reference Finkel, Czaja, Schulz, Martinovick, Harris and Pezzuto2007), no effect on depression (Marziali and Donahue, Reference Marziali and Donahue2006), or did not report the results despite measuring depression (Marziali and Garcia, Reference Marziali and Garcia2011).
Beauchamp et al. (Reference Beauchamp, Irvine, Seeley and Johnson2005) found a dose–response relationship showing that greater time spent viewing the internet program was associated with greater improvements on a composite outcome measure, which included depression. There are some tentative suggestions that other factors may moderate the relationship between intervention and depression. Eisdorfer et al. (Reference Eisdorfer2003) found that the efficacy of the intervention differed according to ethnicity and type of carer, in terms of their relationship to the person being cared for, and Finkel et al.'s (Reference Finkel, Czaja, Schulz, Martinovick, Harris and Pezzuto2007) post-hoc tests found that carers with greater baseline depression demonstrated greater improvements in depression.
Anxiety
Two high quality studies (Mahoney et al., Reference Mahoney, Tarlow and Jones2003; Beauchamp et al., Reference Beauchamp, Irvine, Seeley and Johnson2005) measured state anxiety using the State-Trait Anxiety Inventory (STAI; Spielberger et al., Reference Spielberger, Gorsuch, Lushene, Vagg and Jacobs1985). Evidence from these two studies suggests that the computer-mediated interventions reduced carer anxiety, although Mahoney et al. (Reference Mahoney, Tarlow and Jones2003) only found this result in relation to participants with medium or low levels of mastery at baseline.
General mental health
One study of Marziali and Garcia (Reference Marziali and Garcia2011) measured general mental health using the mental health subscale of the Health Status Questionnaire 12 (HSQ-12, Pettit et al., Reference Pettit, Livingstone, Manela, Kitchen, Katona and Bowling2001). Significant results were only obtained after conducting multiple post-hoc tests without correction for family-wise error rate. Torp et al. (Reference Torp, Hanson, Hauge, Ulstein and Magnusson2008) used the General Health Questionnaire 20 (Goldberg and Williams, Reference Goldberg and Williams1991) and did not find an effect. Beauchamp et al. (Reference Beauchamp, Irvine, Seeley and Johnson2005) used two subscales from the Revised Ways of Coping (Vitaliano et al., Reference Vitaliano, Russo, Carr, Maiuro and Becker1985) in their higher quality study, but did not find any differences over time between the control group and the treatment group.
Carer physical health and health Behaviors
Marziali and Donahue (Reference Marziali and Donahue2006) measured carer physical health using the Health Status Questionnaire 12 and Finkel et al. (Reference Finkel, Czaja, Schulz, Martinovick, Harris and Pezzuto2007) measured carer self-care activities using a modified version of the Caregiver Health and Health Behaviors Scale (Posner et al., Reference Posner, Jette, Smith and Miller1993). Neither study reported any effects.
Carer stress and burden
Nine studies measured carer stress or burden. Four used variants of the Revised Memory and Behaviour Problems Checklist (RMBPC, Teri et al., Reference Teri, Truax, Longsdon, Uomoto, Zarit and Vitaliano1992) (Mahoney et al., Reference Mahoney, Tarlow and Jones2003; Marziali and Donahue, Reference Marziali and Donahue2006; Finkel et al., Reference Finkel, Czaja, Schulz, Martinovick, Harris and Pezzuto2007; Gallagher-Thompson et al., Reference Gallagher-Thompson2010) and the other studies used a variety of other measures. Five studies of medium and high quality found positive effects of the intervention on carer burden (Glueckauf et al., Reference Glueckauf, Ketterson, Loomis and Dages2004; Beauchamp et al., Reference Beauchamp, Irvine, Seeley and Johnson2005; Gallagher-Thompson et al., Reference Gallagher-Thompson2010; van der Roest et al., Reference Van der Roest, Meiland, Jonker and Dröes2010; Marziali and Garcia, Reference Marziali and Garcia2011). Three studies of medium and high quality found some effects of the intervention on carer burden (Mahoney et al., Reference Mahoney, Tarlow and Jones2003; Marziali and Donahue, Reference Marziali and Donahue2006; Chiu et al., Reference Chiu2009). Mahoney et al. (Reference Mahoney, Tarlow and Jones2003) found that participants with lower mastery at baseline showed greater improvements in the bothersome nature of caring, and that wives showed a decrease in the bothersome nature of caring compared to husband, child, sibling, or other relation carers. Marziali and Donahue (Reference Marziali and Donahue2006) found that the intervention group experienced a reduction in stress. There is some limited evidence of dose–response relationship: Chiu et al. (Reference Chiu2009) found that change on the Burden Scale for Family Caregivers (BSFC, Gräsel et al., Reference Gräsel, Chiu and Oliver2003) was not significant overall, but that frequent users had greater change than nonusers. One study found no effect on carer burden as a result of the intervention (Torp et al., Reference Torp, Hanson, Hauge, Ulstein and Magnusson2008).
In a high quality study, Gallagher-Thompson et al. (Reference Gallagher-Thompson2010) found that mean upset or bother in relation to problems decreased in a skills learning DVD group, but not in an educational DVD group, perhaps indicating that information needs to be combined with other forms of support to reduce carer burden.
Carer social support
Three medium quality studies used measures of social support (Finkel et al., Reference Finkel, Czaja, Schulz, Martinovick, Harris and Pezzuto2007 – A received social support scale from the Inventory of Socially Supportive Behaviours, Barrera et al., Reference Barrera, Sandler and Ramsay1981; Marziali and Donahue, Reference Marziali and Donahue2006 – The Multidimensional Scale of Perceived Social Support, Zimit et al., Reference Zimit, Dahlem, Zimit and Farley1988; Torp et al., Reference Torp, Hanson, Hauge, Ulstein and Magnusson2008 – the Revised UCLA Loneliness Scale, Russel et al., Reference Russel, Peplau and Cutrona1980, and the Family and Friendship Contacts Scale, Andersson, Reference Andersson1984) with varied findings.
Finkel et al. (Reference Finkel, Czaja, Schulz, Martinovick, Harris and Pezzuto2007) found that although there were no main effects for received social support, those in the intervention condition with higher levels of support at baseline were more likely to maintain that support than those with lower levels of support. Marziali and Donahue (Reference Marziali and Donahue2006) did not find a difference between intervention and control groups in relation to perceived social support at follow-up. Torp et al. (Reference Torp, Hanson, Hauge, Ulstein and Magnusson2008) found increases in social contacts and social support at follow-up. This is perhaps not a surprising finding given that a significant part of the intervention involved introducing computer novices to the internet, which would be likely to increase their capacity for social networking.
Positive aspects of caregiving
Two studies used measures of the positive elements of caregiving (Beauchamp et al., Reference Beauchamp, Irvine, Seeley and Johnson2005 – Positive Aspects of Caregiving, Tarlow et al., Reference Tarlow, Wisniewski, Belle, Rubert, Ory and Gallagher-Thompson2004); Glueckauf et al., Reference Glueckauf, Ketterson, Loomis and Dages2004 – Stress-Related Growth Scale, Parke et al., Reference Parke, Cohen and Murch1996). The high quality study (Beauchamp et al., Reference Beauchamp, Irvine, Seeley and Johnson2005) found that the intervention increased positive elements of caring, but the medium quality study (Glueckauf et al., Reference Glueckauf, Ketterson, Loomis and Dages2004) did not.
Carer self-efficacy
One medium quality study (Glueckauf et al., Reference Glueckauf, Ketterson, Loomis and Dages2004), found that carers reported pre to post improvements on all three subscales of the Caregiving Self-Efficacy scale (Steffen et al., Reference Steffen, McKibbin, Zeiss, Gallagher-Thompson and Bandura2002). Another medium quality study (van der Roest et al., Reference Van der Roest, Meiland, Jonker and Dröes2010) did not find an effect of the intervention on carer self-efficacy. A high-quality study (Beauchamp et al., Reference Beauchamp, Irvine, Seeley and Johnson2005) asked participants six “self-efficacy questions” and found that compared to the control group, the treatment group reported greater gains with respect to self-efficacy.
Program impact measures and composite measures
Five studies used items or measures that asked participants how the intervention had changed aspects of caring for them (Magnusson et al., Reference Magnusson, Hanson and Nolan2005; Torp et al., Reference Torp, Hanson, Hauge, Ulstein and Magnusson2008; Gallagher-Thompson et al., Reference Gallagher-Thompson2010; Lewis et al., Reference Lewis, Hobday and Hepburn2010; van der Roest et al., Reference Van der Roest, Meiland, Jonker and Dröes2010). In this review, these measures are referred to as program impact measures. One additional study used a 16-item knowledge questionnaire (Rosen et al., Reference Rosen, Mittal, Mulsant, Degenholtz, Castle and Fox2003). All but one of these studies found positive effects on these measures. For the most part, the studies that used these measures were of poorer quality. This is, in part, because studies that use such measures as their only outcome measure cannot score highly on the modified version of Downs and Black's (Reference Downs and Black1998) quality assessment tool.
Lewis et al. (Reference Lewis, Hobday and Hepburn2010) was one of two studies that only used a program impact measure. Participants generally endorsed finding the intervention to be educational, convenient, useful, and interesting. Lewis et al. (Reference Lewis, Hobday and Hepburn2010) generally did not find any significant relationships between demographic data and responses, apart from a low correlation between age and the caregiving scale; as age increased, scores on the caregiving scale decreased, indicating less perceived benefit from the intervention.
In Torp et al.'s (Reference Torp, Hanson, Hauge, Ulstein and Magnusson2008) study, at follow-up, carers reported less need for information about the cared-for person's illness and caring. However, whether this knowledge would have equated to an increase in ability or confidence in caring for the person cannot be established.
Rosen et al. (Reference Rosen, Mittal, Mulsant, Degenholtz, Castle and Fox2003) used a 16-item knowledge questionnaire before and after a computer-based education intervention for family members of PwD who were nursing home residents. They found that knowledge of key principles of dementia care improved after the intervention. It is worth noting, however, that the mean score on the knowledge questionnaire increased by 2.3 items. While this was statistically significant, such an increase may not mean much in practice.
Van der Roest et al. (Reference Van der Roest, Meiland, Jonker and Dröes2010) found no difference between the control group and the intervention group's knowledge about services following the intervention. They also found that the intervention group's mean opinion on the usefulness of the intervention was neutral.
Discussion
Sixteen papers describing 14 studies met inclusion criteria. Interventions were varied and multifaceted, with a range of different outcome measures. These factors make direct comparison of studies difficult, in line with previous reviews of support for carers of PwD (e.g., Wu et al., Reference Wu, Faucounau, de Rotrou, Riguet and Rugaud2009). All studies found some positive effects of the intervention evaluated, although the lack of statistical power of many studies and the use of some nonstandardized measures further complicates comparison of studies.
Having said this, the most commonly measured variables were carer burden/stress and depression. In general, higher quality studies found that interventions did have an effect on these variables. Two high quality studies also found that anxiety was reduced following intervention. Positive aspects of caring may also be increased through these interventions as may through carer self-efficacy. There were mixed results in relation to social support, and physical aspects of caring did not seem to be affected. Program impact measures indicate general acceptability of these interventions.
Factors influencing the effectiveness of interventions
Due to interventions being multicomponent and complex, it is difficult to disentangle the efficacy of individual intervention components, with a large range of factors having potential effects, including the intensity and duration of the intervention, carer characteristics, and outcome selected (Cooke et al., Reference Cooke, McNally, Mulligan, Harrison and Newman2001). Several of the reviewed studies attempted to examine factors influencing outcomes, although this was rarely the main focus and there was no obvious overarching framework guiding which factors to examine. Two studies found that intervention effects were moderated by certain baseline characteristics of participants, with the intervention having greater effect for those with lower mastery (Mahoney et al., Reference Mahoney, Tarlow and Jones2003) or greater depression (Finkel et al., Reference Finkel, Czaja, Schulz, Martinovick, Harris and Pezzuto2007). An interesting speculation is that this could indicate that the interventions are more effective for those who have more problems to start with. It could, however, also simply represent regression to the mean. As found in earlier research (e.g., George and Gwyther, Reference George and Gwyther1986), two high quality studies (Eisdorfer et al., Reference Eisdorfer2003; Mahoney et al., Reference Mahoney, Tarlow and Jones2003) found differential effects of interventions according carer–care recipient relationship and ethnicity. These findings caution against generalizing results of research too widely and highlight the need for such factors to be considered in the design of interventions for carers of PwD, something which is perhaps more easily incorporated in multimedia than traditionally delivered interventions. It is also potentially the case that educational information alone does not have much effect and that it needs to be combined with learning skills (Gallagher-Thompson et al., Reference Gallagher-Thompson2010). One possible issue with computer-mediated interventions is the need for carers to be self-motivated; one high quality study (Beauchamp et al., Reference Beauchamp, Irvine, Seeley and Johnson2005) highlighted this when they found a dose–response relationship between viewing the intervention program and change in a global composite outcome variable.
Methodological issues
The studies reviewed had a number of limitations: they often had poorly defined aims, many did not have control groups, a number were underpowered and follow-up periods were often short. Future research would benefit from addressing these issues. It is also important that outcome measures be closely linked to the aims of interventions in order that the intervention's effectiveness can be properly evaluated.
Clinical implications and future research
Computer-mediated intervention for informal carers of PwD is a growing area; these interventions offer a range of potential benefits. This review found that their effectiveness is mixed, but generally positive. This suggests that it would be beneficial to carers, and also to services—in terms of reaching more carers as well as potential cost saving implications—for this medium of intervention to be developed so that more individuals can benefit. As home computer use and mobile devices become increasingly widespread, the viability of computer-mediated interventions increases, and the cost to service providers decreases since increasing numbers of carers already have the requisite hardware. More research is, however, needed in order to ensure that interventions are maximally effective. Research needs to consider the effects of interventions on people of different ethnicities and carer–care recipient relationships, as there is evidence that differential effects exist between groups.
Although it was beyond the scope of this review to consider the qualitative components of studies, information gathered from interviews with carers who have used computer-mediated interventions offers an important supplement to quantitative outcome measures. It provides deeper insight into carers’ experiences of using the interventions, and is able to go beyond measurement of symptom reduction and tap into factors, such as feeling supported and less alone, that are of great importance to carers. Future research into computer-mediated interventions for carers of PwD would benefit from a mixed-method approach.
Conflict of interest
None
Description of authors’ roles
Vicky McKechnie conducted this literature review as part of her DClinPsy thesis. She located and evaluated the papers in this review, and wrote the first draft of the paper.
Joshua Stott was the joint supervisor for Vicky's DClinPsy thesis. He provided supervision throughout the project and he has commented on and edited several drafts of the paper.
Chris Barker was the joint supervisor for Vicky's DClinPsy thesis. He provided supervision throughout the project and he has commented on and edited several drafts of the paper.
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