Effectiveness and Usability of a Web-Based Mindfulness Intervention for Families Living with Mental Illness

Mental disorders represent an increasing burden for health care and society, with an estimated incidence in the EU population ranging from 27 to 38.2% (Wittchen and Jacobi 2005; Wittchen et al. 2011) and detrimental effects on health and well-being for both patients and their families. Families can act as facilitators to recovery when they offer support and motivation, but also as barriers and stressors when they display stigma and lack of understanding (Aldersey and Whitley 2015). Caregivers report positive experiences of caregiving, such as friendship, personal development, and a sense of achievement (Cormac and Tihanyi 2006). However, their situation can be marked by high levels of distress, among others, in relation to the patient’s behavior, care duties, own fears, and worries (Cormac and Tihanyi 2006). Caregivers report poorer mental health and more psychiatric symptoms than non-caregivers (Smith et al. 2014a). The need for vigilance, a sense of unpredictability and uncontrollability, but also secondary stress in relationships and professional life contribute to adversely affect caregivers’ health (Phillips et al. 2009). Caregivers can find themselves adjusting their life to the patient’s needs and overlooking own needs, with negative effects on health and quality of life (Skundberg‐Kletthagen et al. 2013; Stjernswärd and Östman 2008). Relating to someone with a mental illness (MI) can be a source of stressful interactions, and taking responsibility for automatic reactions and one’s own part in relationships that can enhance interpersonal stress is essential (Kabat-Zinn 2009). Effective coping strategies may improve families’ ability to cope with the stresses associated with MI and caregiving in daily life (Skundberg‐Kletthagen et al. 2013). If the patient feels good, so does the family, and vice versa (Wright and Leahey 2012). Early identification of caregivers to tailor information and support strategies is essential (Smith et al. 2014a) to prevent further ill health. One of these support strategies can be mindfulness-based strategies.

Mindfulness refers to “the awareness that emerges through paying attention on purpose, in the present moment, and non-judgmentally to the unfolding of experience moment by moment” (Kabat‐Zinn 2003, p.145). Mindfulness-based interventions (MBI), whether face-to-face (de Vibe et al. 2012) or online (Boettcher et al. 2014; Stjernswärd and Hansson 2016a, b), have shown beneficial health outcomes for both clinical (Boettcher et al. 2014; Chadwick et al. 2005) and non-clinical populations (Glück and Maercker 2011; Krusche et al. 2012). MBI show positive effects in terms of mindfulness, personal development (e.g., empathy, coping), quality of life, somatic health outcomes (de Vibe et al. 2012), and in the prevention of depression relapses (Kuyken et al. 2016). Further beneficial effects include decreased levels of stress (Glück and Maercker 2011; Krusche et al. 2012), anxiety (Goyal et al. 2014), and depression (Boettcher et al. 2014; Goyal et al. 2014), and positive psychological effects such as increased well-being and behavioral regulation, and decreased emotional reactivity (Keng et al. 2011). Higher levels of mindfulness also seem to be associated with higher relationship satisfaction and an enhanced ability to respond constructively to relationship stress, including better communication capacity (Barnes et al. 2007). Although findings are encouraging, research is at early stages with methodological flaws (e.g., lack of control group and standardized interventions) and more research of high quality is needed to draw conclusions about effectiveness (Fish et al. 2016). MBI have shown positive effects for caregivers of the frail elderly and of persons with a chronic condition in terms of decreased levels of anxiety and/or depression (Hou et al. 2013; Paller et al. 2015), stress, and caregiver burden (Epstein-Lubow et al. 2011; Pagnini et al. 2015; Stjernswärd and Hansson 2016a). Even briefer MBI appear to have beneficial effects (Boettcher et al. 2014; Carmody et al. 2009; Stjernswärd and Hansson 2016a, b; Vesa et al. 2016; Zeidan et al. 2010).

The cultivation of self-compassion, towards oneself and others, is more or less explicit and focused upon in different types of meditation practices (Hölzel et al. 2011). In mindfulness-based stress reduction programs (MBSR), associated with increases in self-compassion, the latter is implicitly and explicitly interwoven into meditation instructions (e.g., bring back attention with gentleness, explore what feels good, take care of yourself when encountering suffering, etc.) (Hölzel et al. 2011). Self-compassion has three components: (1) self-kindness versus self-judgment, (2) common humanity versus isolation, and (3) mindfulness versus overidentification or avoidance (Neff 2003). Compassion meditations contribute to acceptance and a non-judgmental and caring attitude towards the self and others (Kabat-Zinn 2009) and may hence be useful for caregivers that need to tackle inter-relational stress, with even relatively short training time resulting in positive effects of psychological functioning (Hofmann et al. 2011). Brevity may help prevent additional stressful time-commitment, which may be a reason for intervention drop-out (Shapiro et al. 2005).

Limited resources, exhaustion, transportation, and stigma are common barriers to help-seeking and treatment. Customized and user-friendly web-based interventions that are easily available at the convenience of caregivers may help overcome such barriers. The extent to which a specific user can use a specific product to reach specific goals, with purposefulness, effectiveness, and satisfaction, in a given context refers to its usability (International Organization for Standardization 1998). A web-based mindfulness intervention was tested in a prior feasibility study, with promising results in terms of increased levels of mindfulness and self-compassion, and reduced levels of caregiver burden and perceived stress (Stjernswärd and Hansson 2016a). The intervention showed good acceptance, feasibility, usability, and user value, with ease of use and convenience of access representing strong motivators for use (Stjernswärd and Hansson 2016b). The aim of the current study was to assess the effectiveness and usability of the mentioned web-based mindfulness intervention in a randomized controlled trial including families of a person with MI, with mindfulness as the primary outcome and caregiver burden, perceived stress, and self-compassion as secondary outcomes.

General linear model analyses with repeated measures and analyses of variance were performed to evaluate the intervention’s impact on primary (FFMQ) and secondary (SCS-SF, PSS) outcomes as compared to WLC. Paired-samples t tests were carried out to compare means on caregiver burden (CarerQoL7-D). Between-group effect sizes for primary and secondary outcomes for the experiment group and the WLC post-intervention were calculated, and within-group effect sizes for the experiment group at follow-up, using Cohen’s d. Effect sizes below 0.5 were considered as small, between 0.5 and 0.8 as medium, and above 0.8 as large (Cohen 2013). IBM SPSS Statistics package version 22 was used in all statistical analyses. Spearman correlation analyses were used to investigate the association between amount of exercise reported and outcome of the intervention.

A total score was calculated to obtain an overall value of system usability (SUS) (Brooke 1996). Qualitative data from the usability questionnaires (T2, T3) was analyzed with content analysis (Graneheim and Lundman 2004) and quantitative data is reported with descriptive statistics. The program was similar for both groups (experiment and WLC). Since usability data was available and can contribute to enhance the intervention, usability data from both groups was aggregated (Tables 5 and 6).

Mindfulness (FFMQ) significantly improved pre- and post-intervention in comparisons between the experiment group and the WLC group. This was the case for both the overall score and all subscale scores (p = 0.001) with effect sizes mainly medium or large, range 0.42–1.1. There were significant and positive improvements in the experiment group between pre-intervention and follow-up in both the overall and the subscale scores with p values 0.001 except for the subscale non-judging (p = 0.005) and within-group effect sizes were in the range 0.50–0.97 (Table 3).

There were also significant improvements pre- and post-intervention regarding self-compassion in comparisons between the groups. The experiment group showed significant changes in the global SCS-SF score and in several of the SCS-SF’s subscales at the p = 0.001 level, except for the Self-kindness (p = 0.048), Isolation (p = 0.003), and Mindfulness (p = 0.002) subscales. Effect sizes were small to medium (range 0.30–0.80). Comparisons pre-intervention and follow-up showed significant within-group improvements in the experiment group in all subscales except for the Self-Judgment scale, with effect sizes in the range 0.49–1.2.

Significant decreases in favor of the experimental group were observed in perceived stress (PSS scale) in pre- and post-intervention comparisons between the groups (p = 0.002 and ES = 0.66). Within-group comparisons in the experimental group showed a significant improvement between pre-intervention and follow-up (p = 0.002 and ES = 0.66).

Regarding CarerQoL-7D, comparisons between the groups pre- and post-intervention showed significant improvements in favor of the experimental group in three out of seven dimensions, relational problems, mental health, and problems with daily activities (effect sizes ranging from 0.30 to 0.57, Table 4). Within-group comparisons pre-intervention and follow-up in the experiment group showed improvements in fulfillment (p = 0.01, ES = 0.46) and relational problems (p = 0.002, ES = 0.62). No improvements were shown in the other dimensions including the VAS scale which indicates levels of happiness with caregiving experiences.

Out of the 99 participants (56 in the experiment group and 43 in the WLC) answering the usability questionnaire SUS at T2 after testing the program, 22% reported overall SUS scores with values <70, 29% reported scores ≥70 (good), and 49% had scores ≥85 (excellent). Motivators and barriers to use related to technical aspects (e.g., flexibility and ease of use vs. navigation difficulties), program contents (e.g., guiding voice vs. lack of exercise variation), and the participants’ life situation (e.g., hectic schedule) were described in the free-text answers, where effects of training were described as motivating (Tables 5 and 6) and e-mail reminders were experienced as positive for training by almost two thirds of the participants. Some negative effects were reported by a minority of participants, out of which experiencing the training as another stressful demand was the most common. Negative life events during the experiment group’s test period were reported by over a third of participants in both groups and roughly as many reported having additional sources of support. A majority did or would recommend the program to others and as many considered pursuing their training, which they also reported doing to different degrees after the test period’s termination.

Similarly to the earlier feasibility study, significant improvements were found in the primary outcome mindfulness, with a large effect size in the mindfulness global sum and mainly medium to large effect sizes in all subscales both post-intervention and at follow-up. Significant improvements were also found in the secondary outcomes self-compassion and perceived stress, with mostly medium-sized effects. The current study showed that training time was moderately associated with changes in the primary outcome mindfulness, and that there were no differences between drop-outs and those remaining in the intervention regarding mindfulness outcomes, speaking for representativeness of the group. Recent studies show that even shorter interventions have beneficial health outcomes (Boettcher et al. 2014; Carmody et al. 2009; Krusche et al. 2012; Stjernswärd and Hansson 2016a; Zeidan et al. 2010). Neurobiological hypotheses suggest that sustained training leads to neuroplastic structure and function changes in the brain, where mindfulness states as cultivated through training may result in increased mindfulness as trait (Garland et al. 2010; Kiken et al. 2015). An interesting question is whether MBI are more beneficial for some individuals than others. Individual trajectories of change in state mindfulness have been found to predict changes in trait mindfulness and distress pre- and post-intervention (Kiken et al. 2015). Although nothing can be said about this in the current study, it is an interesting line of research and further studies may shed light onto the meaning of individual differences for outcomes in mindfulness training.

Surprisingly, caregiver burden as measured by the CarerQoL7-D in most aspects did not show significant improvements, with a few exceptions including the relational dimension. These findings challenge our hypothesis that mindfulness training can reduce caregiver burden and previous research on MBI for caregivers (Epstein-Lubow et al. 2011; Stjernswärd and Hansson 2016a). A mindful attitude has previously been found to be negatively correlated with caregiver burden, depression, and anxiety and positively correlated with quality of life (Pagnini et al. 2015). A possible explanation for the current findings, besides lack of effect of the intervention, may be that the instrument is “rough-grained” or that the outcome is suboptimal in the present context. Maybe alternative instruments measuring objective and subjective dimensions of caregiver burden could be tested in future studies. The improvements in mindfulness, self-compassion, and perceived stress may nevertheless contribute to enhance caregivers’ quality of life and ability to cope with the daily stresses engendered by a life with MI, somehow decreasing their experiences of burden.

Noteworthy in the present findings is that the self-compassion global sum and the over-identification subscale went from medium-sized effects post-intervention to large at follow-up, which may be positive for caregivers. An intense self-focus following the confrontation of one’s own limitations can lead to tunnel vision, over-identification, and being carried away with negative thoughts and feelings about the self (Neff and Vonk 2009). Self-directed compassion generates a desire to alleviate one’s own suffering, to heal oneself with kindness, to recognize one’s shared humanity, and to be mindful when considering negative aspects of oneself (Neff 2003; Neff and Vonk 2009; Thompson and Waltz 2008). Mindfulness and compassion can help tame the inner critic (Stjernswärd and Hansson 2016b), reduce guilt and stress, and improve interpersonal relationships (Hofmann et al. 2010; Jazaieri et al. 2014; Stjernswärd and Hansson 2016b; Yadavaia et al. 2014). A mindful attitude may be protective against caregiver burden in several ways, for instance by not remaining trapped and defining oneself as a caregiver only and thereby limiting one’s identity (Pagnini et al. 2015). To regain an identity separate of that of a caregiver, caregivers need to allow themselves to re-evaluate priorities and gain more balance between their relationships and other domains of life, such as occupational or leisure activities (Priestley and McPherson 2016; Stjernswärd and Östman 2008).

Burnout is common among caregivers (Onwumere et al. 2015), who also report difficulties in balancing relationships and activities in daily life (Priestley and McPherson 2016; Stjernswärd and Östman 2008). Caregivers struggle with strong emotions, including worry, (self) stigma, and blame (Eaton et al. 2016; Stjernswärd and Östman 2008; Stjernswärd and Hansson 2016b). Low levels of self-compassion have been associated with self-criticism, guilt, rumination, and worry (Raes 2010), and caregivers with low levels of self-compassion that tend to continually subordinate own needs risk compassion fatigue and burnout (Ringenbach 2009). Interventions that raise self-compassion can raise positive affect and reduce negative affect, shame, and emotional exhaustion (Leary et al. 2007; Neff et al. 2007b; Neff and Vonk 2009). Self-compassion supports an increased acceptance of both pleasant and unpleasant experiences and a non-judgmental acceptance of present moment experiences. It has been associated with greater likelihood to compromise in conflict situations and lesser likelihood to subordinate own needs, hence acknowledging both own and others’ needs (Yarnell and Neff 2013), which is central to healthy interpersonal relationships (Grotevant and Cooper 1986). Self-compassion has been associated with healthier and more sustainable interactions (Crocker and Canevello 2008), greater authenticity, relational well-being (Neely et al. 2009; Yarnell and Neff 2013), self-reported life satisfaction (Neff et al. 2007b; Neff and Vonk 2009), less emotional turmoil (Yarnell and Neff 2013), and has been negatively associated with anxiety and depression (Neff et al. 2007a; Raes 2010; Ying 2009). It can be an antidote against unproductive repetitive thinking such as rumination and anxious worrying, and act as a buffer against anxiety and depression (Raes 2010).

Most participants in the current sample were middle-aged, well-educated women and were a parent or partner—or an adult child in the WLC—to the patient. It goes in line with previous studies on web-based support (Stjernswärd 2009; Stjernswärd and Hansson 2013; Stjernsward and Hansson 2014) and MBI for caregivers (Stjernswärd and Hansson 2016a; Whitebird et al. 2011) and other populations (Fish et al. 2016). As mothers (Finley 1989), spouses, and adult children often have a major role in caregiving (Brody 1985), this is not surprising. Women are also more prone to seeking help online than men (Ybarra and Suman 2006). MBI have nevertheless been found to be effective for a variety of populations and may hence benefit a diversity of caregivers. Reaching out to caregivers in need is essential. So is finding ways to attract them and sustain engagement and motivation to participate in for instance MBI. Group-based interventions include challenges such as time commitment, willingness to engage, and travel (Whitebird et al. 2011). Web-based interventions such as the current MBI may help overcome such challenges as seen in the previous feasibility and usability studies, although they still require discipline and time commitment. This may be experienced as a stressful factor per se (Stjernswärd and Hansson 2016a, b). Ease and convenience of use and the effects of training were strong motivators for use (Stjernswärd and Hansson 2016b), also in the current study. The majority of participants rated the program’s usability as good-excellent and experienced benefits from their continued training. Nevertheless, there is room for improvement, both related to the contents and technology. Some negative effects of training were reported, e.g., stress or distressing feelings in connection with the training. Supplementing the current intervention with virtual classrooms in which participants can discuss their experiences with an instructor and/or peers may be a useful complement through which potential negative effects can be addressed, although further studies are needed to explore the value and effects of such blended interventions.

Pre-emptive policies to identify caregivers at early stages and the inclusion of assessments of caregiving activities/roles to tailor relevant and suitable interventions are called for (Smith et al. 2014b). Raising awareness about interactions with the patient, distancing oneself from problems, and seeing them from a different perspective may empower families dealing with crises such as the onset of an illness (Gavois et al. 2006). This can be achieved in interaction with a mental health professional (Gavois et al. 2006), but possibly also through MBIs such as the current one, where participants report a sense of increased awareness, perspective, and freedom of choice subsequent to their training (Stjernswärd and Hansson 2016a, b). Carers’ belief about the negative consequences of an illness for themselves have been identified as predictors of emotional exhaustion, and low personal accomplishment has been associated with a carer’s less optimistic beliefs about the illness timeline and fewer reports of adaptive coping (Onwumere et al. 2015). Tailored interventions to prevent burnout may thus be wanted, including strategies for more balanced appraisal of illness, problem-focused coping, and therapeutic optimism (Onwumere et al. 2015). MBIs such as the current one can help break automatic reactions and ruminations and facilitate more creative and strategic thinking (Stjernswärd and Hansson 2016b), which may be useful in filling the existing gap in addressing caregivers’ needs of support.