Abstract
Purpose:
Family interventions have been developed to support carers of people with mental illness, but not much is known about how such interventions can improve carers’ physical health. This review aimed to identify and analyze existing family interventions that addressed the physical health of carers.
Methods:
A scoping review was conducted to identify peer-reviewed journal articles on family interventions with physical health components. A total of six articles were found and analyzed thematically to identify the family interventions, physical health components of the interventions, and associated physical health outcomes.
Results:
Synthesis of the findings from relevant articles showed that the development of physical health components in family interventions is emerging and at an early stage. However, most studies had physical health as a minor area focusing mainly on stress and sleep.
Conclusions:
Family interventions would be more holistic if consideration of physical health issues was addressed as a core module.
Several researchers have argued that mental health services should not focus on individuals with mental illness only but rather adopt a holistic approach to address the health and well-being of both the people with mental illness and their families (Fox et al., 2015; Wyder & Bland, 2014). Family interventions have shown positive results in improving the psychological health, social connections, and coping abilities of carers. However, not much is known about whether existing family interventions have any effect in supporting the physical health of caregivers of people with mental illness.
Carers of people with mental illness experience negative impacts such as psychological distress and caregiving burden as they provide considerable support to their relative with mental illness (Awad & Voruganti, 2008; Caqueo-Urízar et al., 2017). The quality of life of carers was shown to be much worse than the population norm (Hayes et al., 2015). Recent studies also showed that carers had poor physical health (Onwumere et al., 2018; Poon et al., 2017). Carers’ poor sleep and physical pain were commonly reported (Gupta et al., 2015; Smith et al., 2018). Parents of youth with bipolar disorder had elevated inflammatory markers indicating chronic stress and depression, which were related to increased morbidity and mortality (Nadkarni & Fristad, 2012). Carers of young people with early psychosis were overweight, had high blood pressure, and were at risk for cardiovascular problems (Poon et al., 2019). High risks for inadequate fruit or vegetable consumption, insufficient physical exercise, harmful or binge alcohol consumption, and increased smoking were found in a recent study of carers of people with mental illness (Bailey et al., 2019). In a population-based study, carers of people with psychotic disorders perceived their physical health to deteriorate over time (Poon et al., 2017).
Family interventions have been recommended as essential in mental health services (Dixon et al., 2010; Galletly et al., 2016) and have shown to reduce hospital readmissions and promote compliance with medication (Pharoah et al., 2010). Various types of family interventions have been developed to support families and carers of people with mental illness (Falloon et al., 2001; Poon & Kung, 2020). Some common family interventions are peer-led family educational programs, family psychoeducation, support groups, family therapy, and family consultation approaches. Peer-led family educational programs are useful in providing support and increasing the knowledge of carers such as the National Alliance on Mental Illness Family-to-Family program (Toohey et al., 2016). Family psychoeducation programs aim to provide families with crucial knowledge of mental illness and to help families to improve their coping skills. Several reviews have shown that family psychoeducation for schizophrenia and bipolar disorder is effective in reducing psychiatric symptoms, improving medication adherence, and reducing hospital stays (Reinares et al., 2014; Thorning & Dixon, 2016). Support groups have been developed to help families connect with other families with similar problems and to increase their coping strategies (Chien & Chan, 2013). Similar to family psychoeducation, support groups also help to educate families on mental illness, psychiatric treatment, and community resources (Petrakis et al., 2014). Family therapeutic methods using cognitive behavioral or systemic approaches are some ways to help carers deal with the demands of caregiving, solve problems, and improve the family atmosphere (Onwumere et al., 2016; Thorning & Dixon, 2016). Consultation approaches such as consumer-centered family consultation aim to include families in the discussion and planning of treatment and care (Jewell et al., 2012). The open dialogue approach uses social networks, continuity and responsiveness of support, and promotion of dialogues in the family to support the person with mental illness and their family (Seikkula et al., 2006). However, little is known about how family interventions can specifically address the physical health of carers. Given the limited knowledge on this topic, this literature review examined the following questions: (1) What are the existing family interventions that support the physical health of caregivers of people with mental illness?, (2) How effective are these interventions in improving carers’ physical health?, and (3) What are the knowledge gaps in providing physical health interventions to carers?
Method
A scoping review is a common type of literature review used in social work to identify select literature on a given topic (Cassidy & Poon, 2019). Scoping reviews are usually conducted prior to a systematic review of the topic and do not appraise the quality of the included studies. Therefore, scoping reviews have the advantages of providing a comprehensive review within a shorter time than systematic reviews. This literature review utilized a scoping review methodology to identify the research gap on interventions for carers of people with a mental illness, specifically interventions focusing on the physical health of carers. The authors utilized the literature review framework by Arksey and O’Malley (2005).
Identifying Relevant Studies
The literature review searched electronic databases, including PsycINFO (571 articles), MEDLINE (295 articles), and CINAHL (243 articles). These three databases are sufficient to cover all research related to interventions in mental health published in medicine, allied health, social work, psychology, and nursing journals. The search strategy identified articles published in English in the last 10 years (January 2009 to November 2019) to identify contemporary family interventions. The search terms were (carer* OR caregiver*) AND (mental illness OR mental disorder* OR schizophrenia OR mental health OR anxiety OR depression OR mood disorder* OR bipolar) AND (family intervention OR family therap* OR family program OR family treatment OR psychotherap*) AND (health OR diet OR exercise OR quality of life OR health promotion OR physical).
Study Selection
The search results from each database were screened via title and abstract for relevance to the topic area. The inclusion criteria for the articles were as follows: (1) peer reviewed, (2) written in English, (3) focus on carers of people with mood, anxiety, or psychotic disorders, and (4) inclusion of an evaluation of a family intervention addressing the physical health of carers. A broad definition for family intervention was used: a program or service involving at least one informal carer or family member which provides ways to improve family relationships, reduce adverse family atmosphere, increase coping strategies, reduce caregiving negative impact, improve knowledge, and address behavior in recipients of care (see Dixon et al., 2010; Pharoah et al., 2010). To answer the research questions, this review only included intervention studies that reported a physical health component and had outcomes related to the physical health of carers. Studies that described self-care, relaxation, and stress management were excluded as these interventions were not clearly aiming to improve the physical health of carers, although they might have some incidental benefits to physical health.
Charting the Data
Relevant articles were extracted for the following: author and year of publication, place of study, research design, measures, sample characteristics, type of intervention, physical health component, and findings. The full-text articles were analyzed thematically with a clear focus to answer the research questions. Following the review strategy outlined by Arksey and O’Malley (2005), the methodologies and findings of the six studies were categorized into four areas. The four areas are Overview of the Studies, Family Interventions, Physical Health Components, and Outcome on Carers’ Physical Health.
Results
A total of 1,109 articles were screened, 221 duplicates were removed, and 92 full-text articles were accessed for eligibility by two reviewers. A further 86 articles were excluded at the stage of full-text screening. The final number of full-text articles included for review and qualitative synthesis was six (Figure 1). All six articles reported using an intervention to address the physical health of carers of people with mental illness. Two articles (Perlick et al., 2010, 2018) were from the same study, with one reporting an additional 6-month postintervention outcome for carers of people with bipolar disorder. The findings from these two papers were synthesized so that a final total of five discreet intervention studies were included in the summary below.
Flow diagram of study selection.
Overview of the Studies
The psychiatric diagnoses reported in the five studies were bipolar disorder (n = 1), psychosis (n = 1), schizophrenia (n = 2), and diverse mental illness (n = 1). The studies were conducted in the United Kingdom (n = 2 in London), the United States (n = 1), Chile (n = 1), and Turkey (n = 1). Most studies had small sample sizes of carers, except for Ata and Doğan (2018), which included 61 carers. Two studies did not include patients. The sample sizes were also small for those studies that included patients (n = 22–41). Two were randomized controlled trials (Gutiérrez-Maldonado et al., 2009; Perlick et al., 2010, 2018), one was a pretest–posttest control group trial (Ata & Doğan, 2018), one used a pretest–posttest single-group trial (Taylor et al., 2016), and the final study applied a mixed-methods approach (Roddy et al., 2015). Most carers were female, while less than half of the patients were females. Carers’ mean age was 41–54 years, and patients’ mean age was 33–39 years. The United States–based study by Perlick et al. (2010, 2018) had a greater proportion of the cohort who were Caucasian, while Taylor et al. (2016) conducted in the United Kingdom had more people of Black ethnicity. The studies conducted in Chile and Turkey did not provide ethnic backgrounds of the participants (Table 1).
Summary of Physical Health Family Interventions.
Note. SIS = Stress Self-Assessment Checklist; BCBSMP = Brief Cognitive Behavioral Stress Management Program; HRB = Health Risk Behavior; HE = health education; SF-36 = Short-Form Health Survey 36; FFT-HPI = Family-Focused Treatment–Health-Promoting Intervention; CORE-10 = Clinical Outcomes in Routine Evaluation-10; CBI = Caregiver Burden Inventory; NHS = National Health Service.
Family Interventions
The interventions in the five studies were different but shared some similar features including education and cognitive strategies. Perlick et al. (2010, 2018) developed the Family-Focused Treatment–Health-Promoting Intervention (FFT-HPI), which consisted of psychoeducation and cognitive behavioral therapy (CBT) for individuals or couples. Phase 1 of FFT-HPI consisted of psychoeducation and goal setting and Phase 2 of using CBT and problem-solving strategies to address the caregiving demands and facilitate positive health behavior. Ata and Doğan (2018) used a brief group Cognitive Behavioral Stress Management Program to support carers to cope with the challenges of caregiving and reduce negative thoughts. Taylor et al. (2016) provided a family program in an inpatient ward consisting of staff training, individual carer support, and an adapted family intervention based on behavioral family therapy (Falloon et al., 1984). The adapted family intervention aimed to improve medication management, problem-solving, communication, and knowledge of mental illness over 4–6 weekly sessions. Roddy et al. (2015) evaluated a pilot brief, needs-led caregiver-focused intervention, which focused on the specific needs of carers of people with psychosis. Gutiérrez-Maldonado et al. (2009) evaluated an 18-week psychoeducation group program in an outpatient clinic that aimed to change attitudes and health perceptions, improve coping and communication skills, and reduce negative emotional impact of carers of people with schizophrenia.
Physical Health Components of Family Interventions
Four studies had physical health components as a minor part of their family interventions. Roddy et al. (2015) reported on individualized strategies in supporting the goals of two carers to improve sleep, stop smoking, and increase physical activity. The details of the physical health components were not available. In the group program of Ata and Doğan (2018), education on stress reduction strategies was provided in one of the seven sessions. Some of the stress reduction strategies addressed physical health such as exercise and diet. In Gutiérrez-Maldonado et al.’s (2009) psychoeducation group program, one of the five modules specifically focused on improving carers’ self-care and health perceptions, although the intervention details were not clearly reported. As for the adapted family intervention based on behavioral family therapy, it included physical health difficulties as a key family issue for discussion (Taylor et al., 2016).
Uniquely, the FFT-HPI had physical health components embedded across the two phases of the family intervention (Perlick et al. 2010, 2018). In Phase 1, carers were provided education on stress and associated health risks. They were then supported by a therapist to develop two self-care goals with the target to promote better physical and emotional health and well-being. In Phase 2, the therapist worked with the carers to identify barriers to self-care and health-promoting responses. Carers were then assigned to one or more modules that addressed self-care including exercise, diet, and physical examination appointments. Compared to the other four interventions, FFT-HPI addressed the physical health of carers more comprehensively.
Outcome on Physical Health of Carers
All studies reported on several domains including patient outcomes and caregiver outcomes. Focusing on the physical health of carers, three studies did not have a specific measure but assessed the physical health of carers using a well-being, caregiving impact or distress instrument. First, Ata and Doğan (2018) used the 38-item Stress Self-Assessment Checklist (DasGupta, 1992) to assess carers’ cognitive-affective, physiological, and pain–stress levels. There was a statistically significant decrease in all three stress indicators in carers receiving the intervention compared to other carers in the control group at posttest (Ata & Doğan, 2018). Second, Taylor et al. (2016) used the Clinical Outcomes in Routine Evaluation-10 (CORE-10; Connell & Barkham, 2007) and Caregiver Burden Inventory (Novak & Guest, 1989) to measure global well-being and caregiving impact. Both scales only have some items assessing physical health. The results showed that the family service had some benefits in improving the well-being of carers. Third, Roddy et al. (2015) also used CORE-10 (Connell & Barkham, 2007) to measure overall well-being, as well as other measures to investigate the outcome of their needs-led intervention. Overall, the findings indicated carers’ satisfaction with the intervention in meeting their needs, with two carers specifically reporting sleep improvement. Gutiérrez-Maldonado et al. (2009) used the Short-Form Health Survey 36 (SF-36; Ware & Sherbourne, 1992) to measure the health status of the carers but found that their psychoeducation program had no effect on carers’ perception of their own health.
Perlick et al. (2010, 2018) administered a number of instruments assessing the outcome of caregivers. They specifically used the nine-item Health Risk Behavior (HRB) Scale (Burton et al., 1997) to examine carers’ health behavior due to the impact of caregiving, exploring whether carers were eating less than three meals a day or missing medical appointments. The SF-36 was also used to assess the mental and physical health (Physical Component Score [PCS]) of the carers (Ware & Sherbourne, 1992). The authors reported improvement in carers’ health risk behavior at posttest (Perlick et al., 2010). However, the study did not find any Group × Time interaction difference for HRB and SF-36 PCS scores across pre-, post-, and 6 month posttreatment (Perlick et al., 2018).
Discussion and Applications to Practice
This review has identified six peer-reviewed articles (five intervention studies) using a scoping methodology. To our knowledge, this is the first review of family interventions focusing on carers’ physical health. Given the known poor physical health of carers, this review provides crucial insight on this topic. Although family interventions have been around for a long time, the identified physical health interventions to address carers’ physical health are just emerging in the mental health field. Specifically, to date, there have been two randomized control trials that have targeted the physical health of carers. However, only one study collected outcome data at a 6-month postintervention follow-up (Perlick et al., 2018), which limits knowledge of the long-term physical health effects of family interventions. In addition, only one study (Ata & Doğan, 2018) had a reasonable sample size. The five studies were conducted in a range of countries, suggesting a growing recognition internationally of the need to address and improve carers’ physical health when providing holistic interventions. The ethnic backgrounds of the participants reflected the demographics of the local contexts with more people of Black ethnicity in South London and Maudsley National Health Service, Chilean in Arica, and Turkish in Central Anatolia in respective studies, except for the study in New York, which had a higher percentage of Caucasian people. The gender and age of the participants also reflected the common demographic characteristics of younger male patients and older female carers.
Among the five interventions described, the FFT-HPI (Perlick et al., 2010, 2018) was the one that provided the most structure to address carers’ physical health. It had cognitive and behavioral strategies and health education to target carers’ health and well-being. Education and cognitive components were also included in the other four studies, targeting coping and caregiving impact. Almost all studies demonstrated to varying extents a promising outcome in improving carers’ physical health. Therefore, there is evidence to suggest that to advance future interventions to address carers’ health and well-being, researchers need to consider including physical health components as well as education and cognitive behavioral strategies for carers as part of their family interventions.
Most of the five studies had physical health as a minor area of their family interventions, and they largely focused on stress management and sleep. Only two studies reported assessing and advising on diet and exercise. For family interventions to be truly holistic, many other physical health issues could be addressed, for example, by including physical health examination or assessment of use of tobacco, exercise, and diet. Given that these areas are key determinants of physical health, most existing family interventions with physical health components to date appear not to be comprehensively developed yet to address carers’ physical health. However, it is important to acknowledge that some studies not included in this review because they did not include any physical health components might have achieved physical health improvement in carers. An example of this being a study that used the Family Work Model reported better quality of life in carers’ physical health, although the model focused primarily on addressing expressed emotions (Tomás et al., 2012). It is possible that improving psychological health and reducing caregiving burden may have some impact in improving carers’ physical health, which is supported by the close associations found between these factors (Poon et al., 2015; Thunyadee et al., 2015). Given that sustained improvement of physical health was not seen in the only study with a 6-month postintervention (Perlick et al., 2018), family interventions likely need to include exercise, diet, and healthy lifestyle in a sustained program to obtain long-term improvement in carers’ physical health.
It is salient to highlight that psychoeducation programs alone are unlikely to lead to improvement in carers’ physical health as evidenced in Gutierrez-Maldonado et al.’s (2009) study. Similarly, a family education intervention with no specific health intervention also showed no improvement in carers’ health perception (Lee et al., 2018). It is possible to hypothesize that a family intervention that does not include structured physical health interventions (such as diet, exercise, and sleep), while useful for increasing knowledge and coping skills, is expected to have minimal effect in changing carers’ physical health. In order to have a holistic biopsychosocial approach and address any deterioration of carers’ physical health, mental health workers, including social workers, need to consider family interventions that actually aim to holistically improve all areas of carers’ health and well-being. Social workers could take a biopsychosocial approach and consider how they could use this holistic approach to support the needs of individuals and families (Healy, 2016). Neglecting the health and well-being of families will eventually affect their caregiving abilities and is likely to lead to them being less able to support the person with mental illness in the long term.
To advance future family interventions, it is necessary for researchers to accurately measure the effectiveness of the physical health components of their interventions. Out of the limited studies done in this area, the two most promising scales are the nine-item HRB Scale (Burton et al., 1997) and SF-36 (Ware & Sherbourne, 1992). As comparing the psychometric properties of scales is outside the scope of this study, family intervention researchers will need to identify a relevant scale for their studies while balancing the burden on research participants to complete questionnaires. Researchers can also consider physical health measures such as body mass index, waist measurement, and blood monitoring (Poon et al., 2019). In addition, a food frequency questionnaire that is suitable for carers in their local contexts should be considered carefully and utilized to optimally evaluate their diet (Cade et al., 2004).
Mental health has recognized the neglect in the physical health of people with mental illness for a long time, and there are various interventions developed recently to address the physical health of service users (Curtis et al., 2016). Mental health workers should capitalize on these developments to advocate for family members to benefit from these interventions. In addition, social workers can consider collaborating with medical and nursing staff to assess the physical health of family members and refer someone with concerning physical health problems to a general practitioner for further assessment and treatment (Poon et al., 2019).
The five intervention studies reported the usual recruitment challenges like attrition rates. This review did not find any barriers to delivering physical health interventions to carers nor barriers to uptake of such interventions by carers. Given that several authors have highlighted a number of barriers to delivering family interventions in mental health such as insufficient staff training, time constraints of families, and the neglect of families due to the nature of client-centered mental health practice (Harvey & O’Hanlon, 2013), it is possible that these barriers are also applicable to family interventions with physical health components. As all five interventions in this review were less than 5 months in duration, this likely indicates the need for future family interventions to be short term in order to ensure feasibility. There is a growing evidence base for the positive effects of family interventions on carers’ well-being and coping skills and on the mental health of their relatives (Poon & Kung, 2020; Thorning & Dixon, 2016). Knowing this, mental health services could provide family interventions as a routine mental health practice. In addition, adding a physical health module to existing family interventions is not a demanding task but will likely achieve significant outcome in supporting the holistic health of carers.
Limitations
One limitation of this review is that articles detailing family interventions with no clear physical health outcome were excluded, which may have resulted in the omission of studies that can provide some insight on how to improve the physical health of carers. Second, some excluded family intervention studies might have had physical health components in their interventions such as discussion of physical health problems, but these components were not reported in their papers. Third, the exact detail of what was delivered regarding physical health in some interventions was brief. In addition, this review was limited to intervention studies published in English and excluded grey literature.
Conclusion
The poor physical health of carers of people with severe mental illness is well established, but there remains limited evidence of interventions addressing this problem. Researchers and mental health workers should collaborate to advance this area to achieve a holistic approach to family interventions. Neglecting the health of carers will eventually lead to greater negative caregiving impact and less support to people with mental illness in the long term.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the School of Social Sciences, University of New South Wales.
