Relative invisibility: an integrative review of carers’ lived experiences of a family member’s emergency mental health crisis

ABSTRACT

An integrative review was conducted to evaluate and synthesize the current state of knowledge of family carers’ experiences of emergency psychiatric crises of an adult relative. A literature review was performed by searching key terms in EBSCO (CINAHL, Criminal Justice Abstracts, Social Work Abstracts), and Proquest (MEDLINE, PsycINFO) citation databases; 3,350 citations were retrieved and screened for inclusion. Data synthesis of 25 articles meeting inclusion criteria revealed the following five themes: building to crisis; conflicted emotional experience; police apprehension; invisible experts; and “need to know.” Findings provide essential insight into family carers experiences and needs during crisis that is informative for emergency mental health response practices.

KEYWORDS:

• Caregiver
• carer
• crisis
• family
• mental health
• mental illness
• review

Family carers play an enormous role in supporting a loved one during a mental health crisis (Albert & Simpson, 2015). In Westernized countries, the shift away from long-term institutionalization to community treatment has had a significant impact on family members, who often undertake the responsibility of caring for a relative with mental illness (Brennan et al., 2016; Chan, 2011; Sealy, 2012). It has been estimated that 2–3% of the adult population provides informal care and support to a family member, friend, or neighbor living with an emotional or mental health issue (MacCourt & the Family Caregivers Advisory Committee for the Mental Health Commission of Canada, 2013; National Alliance for Caregiving, 2016). In times of crisis, family caregivers initiate help-seeking and liaise with emergency and hospital services (Bradbury, Hutchinson, Hurley, & Stasa, 2016; Cairns, Reid, & Murray, 2015). Carer involvement in acute episodes is imperative given that people in crisis usually do not recognize they are ill or in need of help (Brennan et al., 2016). Risk of harm to self or others is a common feature of psychiatric crisis (Lyons, Hopley, & Horrocks, 2009). About 25% of people with serious mental illness engage in violence in the community, and about half of these violent instances take place at home (Desmarais et al., 2014). Family carers are a frequent target of such acts when they occur and thus may be involved in crisis interventions as a victim (Copeland & Heilemann, 2008; Hsu & Tu, 2014; Solomon, Cavanaugh, & Gelles, 2005).

Fewer hospital beds, inadequate outpatient services, and strict civil commitment criteria have contributed to limited access to care for those whose mental health is deteriorating (Sealy, 2012; Shen & Snowden, 2014). The rise in crisis incidence as well as continued stigmatization directed towards people with mental illness as “dangerous” have expanded the role of emergency responders(e.g., police officers, paramedics, mobile crisis teams, emergency department [ED] staff) in providing mental health care (Franz & Borum, 2011). Between 5–30% of police interactions involve a person with mental illness, often in crisis (Brink et al., 2011; Livingston, 2016), and this rate is climbing (Durbin, Lin, & Zaslavska, 2010). Similar trends have been reported in general hospitals where one in eight (12.5%) ED visits are mental-health related (Owens, Mutter, & Stocks, 2010), with these rates increasing significantly over recent years as well (Weiss, Barrett, Heslin, & Stocks, 2016).

Literature examining the role and experiences of family carers is growing (Albert & Simpson, 2015), and primarily focuses on daily caring and family burden. Caring for a relative with severe mental illness has been found to be highly burdensome, requiring significant personal, financial, and emotional resources, often with little recognition or state support (Chan, 2011). Research specifically examining family carers experiences during emergency mental health crisis has received less attention. A mental health crisis or emergency is individually defined based on the person’s level of disrupted functioning (Joint Commissioning Panel for Mental Health, 2017). Often crisis involves a period of significant distress in which the individual feels they can no longer cope, and the situation is seen as unmanageable for themselves and the family carer (Albert & Simpson, 2015). Risk-focused definitions view crisis as a relatively sudden situation in which there is an imminent risk of harm to the self or others, judgement is impaired, and often includes the onset, worsening, or relapse of a mental illness (Joint Commissioning Panel for Mental Health [JCPMH], 2017).

Family carers are deeply affected by their loved one’s behavior during acute phases of mental illness, and often summon and interact with police and emergency services during episodes of crisis when they can no longer manage on their own. Notably, carers report dissatisfaction, and indeed, negative experiences, during these emergency interactions (Brennan et al., 2016; Shankar & Muthuswamy, 2007). Family carers have consequently implored that police and hospital services develop an enhanced understanding of what families experience in crisis situations (Askey, Holmshaw, Gamble., & Gray, 2009; Gavois, Paulsson, & Fridlund, 2006; Mental Health Commission of Ireland & An Garda Síochána, 2009). The purpose of this integrative review was to identify, analyze, and synthesize available research on family carers concerning their experiences, perspectives and needs while caring for a loved one during an emergency mental health crisis.

Method

The method that was used to examine and synthesize literature was Whittemore and Knafl’s (2005) integrative review methodology. This systematic approach was selected because it allowed for the inclusion of studies with diverse methodologies in the same analysis (i.e., both qualitative and quantitative methods). The first stage of the review was to identify the problem to be addressed. Problem identification requires delineation of variables of interest, including the idea, specific population, and the issue of concern. The problem to be addressed was to understand carers’ experiences and perspectives during an adult relative’s emergency mental health crisis. The term carer used in this study refered to a relative or friend who supports a person living with mental illness by providing unpaid care, support, and fostering recovery (Albert & Simpson, 2015). A mental health crisis was broadly considered as a situation in which a family member’s mental distress and associated behavior became unmanageable and required the emergency services of police, paramedics, mobile crisis teams, or a hospital ED.

Literature search procedure

The literature search was performed by conducting searches of both the title and abstract in the following citation databases: EBSCO (Databases CINAHL, Criminal Justice Abstracts, Social Work Abstracts), and Proquest (Medline, PsycINFO). Both titles and abstracts were searched for the following search terms: [carer* OR family OR families OR caregiv* OR parent* OR mother OR father OR spouse OR wife OR husband] AND [“mentally ill” OR “mental disorder” OR “mental illness” OR “mental health” OR psychiat* OR psychosis OR psychotic OR suicid* OR schizophren* OR “personality disorder” OR “mood disorder” OR psychopathol*] AND [crisis OR crises OR emergenc* OR involuntar* OR commitment* OR hospitalization* OR apprehen* OR acute OR “mental health services” OR “crisis intervention” OR “mental health act” OR police OR policing OR law enforce* OR ambulance* OR paramed*]. To be included in the review, the article had to be published between January 1, 2000 and June 1, 2017 to reflect contemporary findings, written in English, research-based, and focused on carers of adults (aged 18–64) during a mental health crisis. Carers of children under 18 and the elderly were excluded because experiences, needs, and treatment responses differ markedly from adult consumers. Additionally, although comorbidities are often associated with mental illness such as substance abuse, dementia, and traumatic brain injury, the search terms were selected to focus specifically on severe psychiatric illness. Only studies that were conducted in Western cultures with comparable emergency mental health response models, and analogous social response to mental illness were included (Lefley, 2000). Excluded were studies where data was not collected directly from family carers.

In total, 5,604 citations were retrieved from the initial database search process after limiting English, age, and peer-reviewed articles (CINAHL = 2,168, Criminal Justice Abstracts = 636, Social Work Abstracts = 120, MEDLINE = 910, PsycINFO = 1,770). Records were uploaded to EndNote to allow organization of the citations and identify duplicate records. After removal of 2,254 duplicates, 3,350 records remained. Titles and abstracts were then screened for inclusion and exclusion criteria by the author. A subsection of 500 articles was cross-referenced by a research assistant to confirm reliability of screening. After criteria were applied, 95 articles remained. Following a full-text reading for further screening, 73 additional articles were excluded. At this stage, articles were removed if the research question did not focus on carer experiences during a relative’s mental health crisis or where the findings did not include sufficient detail of the carer’s crisis experience. One article was removed because carer experiences could not be disentangled from those of other participants. The reference section of each retained article was searched for relevant citations. Twenty-three articles were identified and screened for inclusion, and from these, three additional articles were included in the review (i.e., Askey et al., 2009; Shankar & Muthuswamy, 2007; Tanskanen et al., 2011). A total of 25 studies were included in the study. Figure 1 depicts a flow diagram illustrating the identification, screening, and inclusion process (Moher, Liberati, Tetzlaff, & Altman, 2009).

Figure 1. PRISMA flowchart.

Data evaluation

Whittemore and Knafl (2005) denote four stages of data analysis: Data reduction, data display, data comparison, and conclusion drawing and verification. The 25 articles were read to identify study purpose and method. The Critical Appraisal Skills Programme (2017) guide was then used to evaluate the methodological rigour of each study. Ten items appraising the study purpose, design, and method were rated yes (1), unclear (0.5), or no (0). All studies yielded an aggregate score of at least 8 out of 10, thus all 25 articles were included in the thematic analysis. Key descriptive information about the reviewed articles was synthesized into Table 1. The quality appraisal is summarized in Table 2.

Table

Author(s) and Year	Research Purpose	Carer Sample and Location	Methods and Analysis	Key Findings	Dominant Themes
Albert and Simpson (2015)	Explore caregivers’ experience of caring for a relative or friend during a mental health crisis.	8 family carers; England	Semi-structured interviews; Phenomenological analysis	Carers experience ‘double deprivation’ through a lack of support from mental health professionals and exclusion from social network. Crisis is experienced as traumatic.	1, 2, 3, 4, 5
Askey et al. (2009)	Understand needs and experiences of carers of people with psychosis.	22 family carers; UK	Focus groups; Thematic analysis	Carers had difficulty accessing services in a crisis and experience hospital admission as traumatic. Carers need accessible care for consumers, increased involvement, emotional and practical support, respect, information and education.	1, 2, 4, 5
Bradbury et al. (2016)	Understand the lived experience of involuntary transport under the MHA from the perspective of consumers, carers, MH nurses, police officers and paramedics.	4 family carers; Australia	Interviews; Thematic analyses	Carers felt conflicted calling for emergency intervention and viewed the police response as intense. Carers perceived that while high-risk situations necessitated police involvement, invocation of the Mental Health Act was stressful and difficult.	1, 2, 3, 4, 5
Brennan et al. (2016)	Examine carer’s experiences of mental health crisis and responses provided by police and mental health services.	9 family carers; Australia	Semi-structured interviews; Thematic analysis	Carers were traumatized by the crisis, yet were rarely offered direct education or support. Carers were reluctant to request assistance from professional services given past negative experiences, underscoring the need for timely, respectful, and collaborative crisis responses.	1, 2, 3, 4,5
Burns-Lynch, Murphy, Gill, and Brice (2013)	Identify consumer, family and staff member perceptions of their experiences with mental health crisis services.	33 family carers; USA	Mixed methods survey; Quantitative and thematic analysis	Inpatient hospitalization and medication changes were viewed as primary methods of resolving a crisis. Family members reported that these strategies, outpatient services, and family and peer support helped address crises. Poor communication, negative hospital experiences, and lack of services were seen as unhelpful.	4, 5
Cerel, Currier & Conwell (2006)	Understand the separate experiences of consumers and family members in the ED after a suicide attempt.	254 family carers; USA	Mixed methods survey; Quantitative and thematic analysis	Experiences in the ED following a suicide attempt are often negative for consumers and family carers. Most families felt they were treated with respect and were listened to. Challenges for family members were the need for better communication of information, unprofessional staff responses, stigma, and long ER wait times.	4, 5
Champlin (2009)	Gain an understanding of caregiving and helping experience of family carers for the seriously mentally ill.	12 family carers; USA	Interviews; Phenomenological analysis	Carers found taking action in challenging circumstances difficult and emotional. Ambiguity produced feelings of anxiety and fear. Commitment was viewed as helpful, yet potentially damaging to relationships. Carers experienced isolation, stigma, tension of waiting, vigilance, and deep caring.	1, 2, 3, 4
Clarke et al. (2007)	Determine patient and family satisfaction with care received in the regional ED, with attention to evaluation of the role of the psychiatric nurse.	7 family carers; Canada	Focus groups; Thematic analysis	Carers managed long ED wait times, staff attitudes, diagnostic overshadowing, and lack of community resources leaving the ED as the only option in crisis. Family needs included greater inclusion, information and education, and support in periods of crisis.	4, 5
Clarke and Winsor (2010)	Examine the impact of a young adult’s first hospitalization on parents; determine parents’ perspectives on their own emotional and support needs.	10 family carers; Canada	Interviews; Thematic analysis	Hospitalization was experienced as a crisis for family carers. Conflicted emotions included relief, shock, and grief. Family experienced isolation from social networks and felt ignored by health care professionals. Emotional and education support were difficult for carers to obtain.	1, 2, 4, 5
Copeland and Heilemann (2008)	Describe how mothers understood violence of their adult children with mental illness; examine the process mothers use to access help and treatment when violence occurred.	8 family carers; USA	Interviews; Grounded Theory	Access to mental health care was difficult and followed a period of vigilance where mothers waited in frustration for their child to satisfy criteria for involuntary hospitalization. Fear and uncertainty led family carers to call emergency services who served as gatekeepers.	1, 2, 3, 4
Crisanti (2000)	Describe mothers’ experiences with the involuntary hospitalization of their adult children living with schizophrenia.	3 family carers; Canada	Interviews; Phenomenological analysis	Experiences with civil commitment for family carers were perceived very negatively. Mothers were baffled and frustrated with the commitment procedure and restrictive admission criteria. Mothers felt unfairly judged, victimized and inadequately supported by the health care system.	1, 2, 4
Gavois et al. (2006)	Develop a model of mental health professional support based on the needs of families of a person with severe mental illness.	12 family carers; Sweden	Interviews; Grounded Theory	Onset of illness was considered a crisis for family carers. Families with ongoing service contact recovered better from crisis. Four mental health professional strategies met family’s needs during crisis: Being accessible and present, listening to the family, sharing information, and empowering the family through support and counselling.	1, 2, 4, 5
Jankovic et al. (2011)	Explore how family carers of patients involuntarily admitted to a psychiatric hospital experience the admission and the subsequent treatment of their relative.	31 family carers; England	Semi-structured interviews; Grounded Theory	Involuntarily hospital admission was a conflicting emotional experience for carers typified by relief, worry and guilt. Carers were frustrated by delays in obtaining help during acute illness, and were often uncertain on how to contact services. Services were perceived to shift the burden of care to families. Problems related to patient confidentiality and lack of information.	1, 2, 4, 5
Klevan et al. (2016)	Explore experiences of mental health crisis from the carer’s perspective and what carers experience as helpful in interacting with crisis resolution teams.	12 family carers; Norway	Interviews; Phenomenological analysis	Crises were highly individual experiences. Crisis narratives were depicted as burdensome experiences impacting carer’s ability to maintain their independent lifestyle. Offered carer support was insufficient. A service response process that was inclusive of family was valued.	1, 2, 3, 4
Levine and Ligenza (2002)	Understand the needs of family carers of people with serious mental illness during crisis.	55 family carers; USA	Focus groups; Thematic analysis	The experience of the “first break” affects the family profoundly. Changes in psychiatric status or residential placement are stressful periods for family carers. Carers generally report that they do not obtain needed supports during the early years of illness.	1, 2, 4, 5
Lyons et al. (2009)	Understand how family carers and consumers define a crisis and view services, resources and interventions as helpful to avoid unnecessary hospital admission.	251 family carers and consumers; England	Questionnaire and group meetings; Thematic analysis	Crisis was defined as a uniquely individual phenomenon typified as distressing, evoking emotions of fear and desperation and feeling unable to cope due to symptoms. Carers and service users preferred pre-emptive services and reported problems in accessing timely services often due to stringent access criteria.	1, 4
McAuliffe et al. (2009)	Understand the experiences, concerns and support needs of family carers during times of acute and post-discharge care.	31 family carers; Australia	Focus groups; Thematic analysis	Carers reported a need for access to respite and support services, information, and inclusion in treatment decisions. Service delivery that acknowledges carer isolation and secondary stigma is needed. Psychoeducation programs, consistency in case management roles, and better information about the interface with legal systems were seen as vital.	1, 2, 4, 5
Mental Health Commission of Ireland and An Garda Síochána (2009)	Capture stakeholders’ experiences and views of their interactions with police, particularly in times of mental health crisis.	Sample size not reported; Ireland	Focus groups; Thematic analysis	Family carers felt the police should include both mental health professionals and carers when responding to crisis. Crisis involving a police response was reported as traumatic, conflicting, anxiety provoking and stigmatizing for families. Carers felt unheard by police. Enhanced police training and integrated responding with mental health services was seen as is essential.	1, 2, 3, 4
Morphet et al. (2012)	Explore the access and journey of care through the ED from the perspective of the consumer and family carer.	10 family carers; Australia	Surveys and focus groups; Thematic analysis	Carers viewed the ED environment and staff ability to care for consumer as suboptimal. The dismissal of carers, untimely treatment of consumers in a private space, and lack of access to female staff were identified areas of improvement. Care for consumer physical health, presence of mental health staff in the ED, and access to mental health triage over the phone were seen as valuable.	4
Muhlbauer (2002)	Examine the development, process and experience of severe mental illness from a family carer perspective.	26 family carers; USA	Semi-structured interviews; Content analysis	Family carers typically experienced six phase of illness: development of awareness of a problem, crisis, instability and recurrent crises, movement toward stability, continuum of stability, and growth and advocacy. Needs characteristic of each phase were evident.	1, 2, 4, 5
Riley et al. (2011)	Understand the views of consumers and their family carers regarding their experience of being detained under the Mental Health Act.	6 family carers; England	Semi-structured interviews; Grounded Theory	Carers reported general dissatisfaction with the quality of care and treatment from both police and professionals. Though the need for police involvement was recognized, most felt police lacked the skills necessary to meet the needs of consumers. The police station was viewed as a distressing and inappropriate setting for assessment.	3, 4, 5
Shankar and Muthuswamy (2007)	Explore the experiences and needs of family carers during various stages of a relative’s mental illness.	36 family carers; Australia	Focus groups, interviews and questionnaire; Thematic analysis	Carers generally experienced crisis as traumatic. Experienced carers used different strategies in help-seeking for crisis compared to newer carers. Carers reported a diversity of needs and experience. Difficulties in accessing support from public mental health services was common.	1, 2, 3, 4, 5
Tanskanen et al. (2011)	Investigate consumer and family carers’ experiences of the onset of psychosis, help-seeking, and the roles of social networks in pathways to care.	9 family carers; England	Semi-structured interviews; Grounded Theory	Carers reported multiple barriers to timely treatment including not recognizing symptoms of mental illness, stigma, not knowing where to seek help, and ineffective service responses. Help was often not sought until a crisis point was reached.	1, 2, 4, 5
Wilkinson and McAndrew (2008)	Explore family carer experiences during their relatives’ admission to an acute inpatient setting.	4 family carers; UK	Interviews; Phenomenological analysis	Carers reported experiences of powerlessness, isolation, needing to be recognized and valued, and a desire for partnership with health care professionals.	1, 2, 4, 5
Wynaden (2007)	Examine the experience of caring for a person with mental illness.	38 family carers; Australia	Semi-structured interviews; Grounded Theory	Caring for a family member was initially overwhelming and consuming until carers managed to find balance and became empowered to find successful strategies to resolve crises. Carers reported difficulty in accessing support in emergency situations. Increased collaboration between health professionals, policy makers and family carers was needed.	1, 2, 4, 5

Dominant Themes: 1 = Building to crisis, 2 = Conflicted emotional experience, 3 = Police apprehension, 4 = Invisible experts, 5 = “Need to know.”

Table 2. CASP quality appraisal ratings of reviewed studies.

CASP item	1	2	3	4	5	6	7	8	9	10	11	12	13	14	15	16	17	18	19	20	21	22	23	24	25
Clear statement of research aims?	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1
Qualitative method appropriate?	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1
Research design appropriately addresses aims?	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1
Appropriate recruitment strategy?	1	1	1	1	1	1	1	1	1	1	0.5	1	1	1	1	1	1	1	1	1	1	1	1	1	1
Data collection addresses research issue?	1	1	1	1	1	1	1	1	1	1	0.5	1	1	1	1	1	1	1	1	1	1	1	1	1	1
Researcher/participant relationship considered?	1	0	0	0	0.5	0	1	0	0.5	1	1	1	1	1	0.5	1	0.5	0	0	1	0	0	0	1	1
Ethical issues considered?	1	1	1	1	.5	1	1	1	0.5	1	0.5	1	1	1	1	1	1	1	1	0.5	1	1	0.5	1	1
Rigorous data analysis?	1	1	1	1	1	0.5	1	1	1	1	1	1	1	1	1	1	1	0	1	1	1	1	1	1	1
Clear statement of findings?	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	.5	1	1	1	1	1	1	1	1	1
Valuable research?	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1	1

Thematic coding

An analysis of dominant and recurring themes occurring within the primary sources was conducted for data comparison and conclusion drawing. Articles were uploaded into NVivo Version 11.4.0 for Mac to facilitate organization of coding. Analysis involved coding, organizing, and synthesizing the data. Initial analytic coding carried out by the author involved careful reading of the findings of each study with concurrent decision-making about how to code each piece of information. Both deductive (theoretically driven) and inductive coding (data driven) was used. Initial codes were continuously evaluated throughout the analytical process where selected codes were elaborated to include more categories while other codes were collapsed. As codes were developed and organized, the author wrote memos about patterns, meanings, ideas, and connections between codes. Particular themes became increasingly prominent as evidenced by the following criteria for rigor: credibility (i.e., plausibility of findings supported by repetition of similar experiences cited by most studies); confirmability (i.e., frequently cited experiences with common explanations from participants), recurrent patterning (i.e., sequences or instances that recur over time in specific ways and settings), and saturation (i.e., captured codes appear exhaustive, and no further insights are forthcoming from the data; Leininger, 1991). A codebook was shared with a research assistant who independently coded all articles to validate the author’s coding. Consensus coding was used to reconcile differences between coders. The analysis revealed five prevailing themes: 1) building to crisis, 2) conflicted emotional experience, 3) police apprehension, 4) invisible experts, and 5) “need to know.”

Results

Overview

The five key themes are presented based on the typical progression of a carer’s experience of a family member’s mental health crisis. Theme 1, building to crisis, describes the distressing experience of caregivers while their relative was becoming progressively ill. Carers reported prevailing uncertainty about what was happening to their loved one, and how to effectively seek help. Carers described the frustration of waiting for access to treatment while managing disruptive and harmful behavior at home. Theme 2, conflicted emotional experience, describes the heightened and deeply divergent emotions felt by carers whose relief at securing needed intervention for their loved one was accompanied by feelings of grief, loss, and betrayal. Theme 3, police apprehension, focuses on how carers perceive police responses to mental health emergencies. Caregivers expressed wariness of calling for police intervention due to fear over disproportionate use of force and criminalization of their loved one. Carers described optimal mental health training for police. Theme 4, invisible experts, details family carer’s universally described feelings of being devalued, dismissed, and excluded during crisis interventions despite having perceived expert knowledge of their loved one to contribute. Carers desired empowerment, legitimacy, and personal support. Finally, Theme 5, “need to know,” centers on family carer’s needs for better information sharing and education on mental illness from professionals. Carers viewed patient confidentiality policies as a barrier to receiving important knowledge about the proper care of their loved one when returning home. These themes are explored in depth below.

Theme 1: Building to crisis

A principal theme throughout the reviewed studies was that caring building up to, during, and after crisis was a traumatic experience for family carers. Caregivers described their family life during crisis as “‘[being in] a war zone for five years,’ ‘living in a nightmare,’ ‘being terrified for our lives’ [and] … ‘like living with a time bomb waiting to go off’” (McAuliffe et al., 2009, p. 7). Family carers recognized uncharacteristic or bizarre behavior in their loved one (Wynaden, 2007), and tended to spend a lengthy period of time caring for their relative leading up to crisis (Copeland & Heilemann, 2008). Witnessing their loved one becoming less recognizable through mental illness without understanding what was happening was unsettling for carers (Muhlbauer, 2002). Help-seeking research suggests that globally families manage relative’s symptoms of mental illness at home for an average of one to two years before initiating help from professional services for first episode psychosis (see Levine & Ligenza, 2002).

Uncertainty was a prevalent subtheme during this period of building to crisis. Families reported a limited understanding or ability to recognize psychiatric symptoms when they first appeared in their family member, especially when there was no prior experience with mental illness (Tanskanen et al., 2011). Carers attempted to make sense of observed changes in their relative, but were unsure how to best respond or access services (McAuliffe et al., 2009). Carers were particularly uncertain about who to contact during periods of acute crisis (Brennan et al., 2016), or when the crisis occurred outside of regular working hours (Askey et al., 2009).

Management and fear of real or threatened harm was a common subtheme during episodes of crisis (Copeland & Heilemann, 2008). Some family carers feared that their loved one would injure or kill themselves or another person (Klevan, Davidson, Ruud, & Karlsson, 2016). Some carers felt it was their responsibility to prevent potential harm perpetrated by their family member (Champlin, 2009). A recurrent method of coping with a loved one’s disruptive symptoms and behaviors was through hypervigilance, where families remained “on high alert” to maintain the safety of their loved one and others around them (Copeland & Heilemann, 2008, p. 5). For example, one parent described, “weeks of sleeping on the floor of her agitated and paranoid son’s room prior to bringing him to hospital” (Clarke & Winsor, 2010, p. 244). Many families managed the home atmosphere by keeping it calm, quiet, and reassuring, and setting limits with the affected family member (Muhlbauer, 2002).

Frustration was another prevailing subtheme of the crisis experience for carers on the homefront. Many family carers described their relative’s lack of insight into their illness and reluctance to seek help due to denial, anger, and stigma-related concerns (Tanskanen et al., 2011). As such, caregivers experienced a period of “frustrated waiting” remaining in a tense and unpredictable home environment managing increasingly disruptive behaviors while their relative deteriorated to the point of meeting restrictive criteria for involuntary commitment (i.e., need to be dangerous to oneself or others; Copeland & Heilemann, 2008, p. 5). This period of delay was isolating for the carers (McAuliffe et al., 2009), who spent increasing amounts of their time and personal resources caring for their relative, having less freedom to live their own lives or connect to social networks (Klevan et al., 2016). Eventually, caregivers became overwhelmed having exhausted strategies to effectively manage their relative’s behavior (Wynaden, 2007). Many family carers initiated formal help-seeking in earnest when they became desperate for their own and/or their relative’s safety (Copeland & Heilemann, 2008).

Theme 2: Conflicted emotional experience

A second dominant theme revealed that crisis was a time of heightened and deeply conflicting emotions for family caregivers. Carers discussed the feeling of acute stress and subsequent relief when their relative received emergency hospital care, intertwined with a diversity of emotions such as confusion, fear, grief, love, respect, and hope (McAuliffe et al., 2009). On the one hand, family members wished to secure needed intervention for their loved one, but on the other, the reprieve they felt in accessing services such as a police response was accompanied by feelings disloyalty (Jankovic et al., 2011). For example, Bradbury and colleagues (2016) found as follows:

Carers were deeply tormented by the events that surround the involuntary admission of a loved one. It is usually a carer who raises the alarm by ringing the emergency phone number when the situation has become untenable. However, the very act of calling the police about a loved one to have them (potentially forcibly) taken away is sometimes perceived as an act of betrayal, not only for the carers about themselves, but for the consumers about the carers. (p. 7)

Involuntary hospital commitment was particularly conflicting for carers; some families described the commitment process as a “double edged-sword” (Champlin, 2009, p. 1530). Carers felt their family members were safer staying in hospital, but felt guilty for committing their relative against their will (Copeland & Heilemann, 2008). Some carers recognized that their relative would feel resentful at being subjected to involuntary intervention (Shankar & Muthuswamy, 2007), consequently carers worried that their relationship could be negatively impacted or destroyed (Gavois et al., 2006). Trust between the carer and family member could also be affected by police mishandling or (un)necessary police apprehension (Brennan et al., 2016). Carers felt they had let their relative down when efforts to secure pre-emptive care failed and hospital admission was required (Albert & Simpson, 2015). Carers also felt disloyal when they informed authorities about their relative’s risk of dangerousness to acquire a legal order for commitment (Champlin, 2009).

Thus, the emotional conflict in securing assistance during a crisis appears to be explained in part by the family carers’ need to preserve their relationship with their loved one. Often, the relative returns to the family home after release from hospital or police custody for support. Families must work together towards recovery and rebuilding their relationships post-crisis.

Theme 3: Police apprehension

A third overarching theme was caregiver concern over police responses to mental health crises. While some carers were relieved to receive help from officers, contact with police during crisis episodes was commonly experienced as traumatic for carers (Shankar & Muthuswamy, 2007). Carers reported distress at witnessing the involuntary detention and police transport of a loved one (Bradbury, Hutchinson, Hurley, & Stasa, 2016). The potential for experiencing distress during a police response may be related to carers tending to summon the police as a “last resort” (Albert & Simpson, 2015, p. 2757), when circumstances are more dire and no other alternatives are available. For example, crises occurring outside of regular working hours often necessitated the aid of police services (Brennan et al., 2016).

Carers expressed wariness of calling for police intervention for a number of reasons. One prevailing subtheme was fear over disproportionate use of force against their loved one, sometimes attributed to police overreaction to the crisis situation (Bradbury et al., 2016). One carer encapsulated her fear of an encounter between her son and police in the following narrative:

Well, it was absolutely, it was sheer terror, is what it was because being psychotic you don’t know if he is going to, he thought that bullets wouldn’t harm him. He stated that several times. So your fear is that even though he isn’t traditionally violent, he may resist the authorities [the police] when they get into your home or outdoors he may try to wrestle with them, and would they consider raising their guns? We have all heard horror stories of these things happening. It is a very fearful and scary thing to think that your son might be killed by authorities or physically harmed or that they will misunderstand his intentions (Champlin, 2009, p. 1530).

Families were concerned that an overwhelming physical police presence, typified by a large number of officers arriving at the home “with lights blazing and in uniform” (Mental Health Commission of Ireland & An Garda Síochána, 2009, p. 38), exacerbated the situation and heightened the family’s fear (Brennan et al., 2016).

A further subtheme that explained carers’ caution in summoning the police was concern over unnecessary criminalization of their loved one (Riley, Freeman, Laidlaw, & Pugh, 2011). Some carers perceived that arrest or involuntary apprehension of their family member occurred based on misinterpretation of the situation where police officers presumed that the person in crisis would act aggressively toward them (Brennan et al., 2016). Carers were distraught to witness their relative being taken away in a police cruiser despite having not committed an offense (Shankar & Muthuswamy, 2007). Both carers and clients reported that, “the very act of being coursed into a caged vehicle for transportation was experienced as punishing and traumatizing” (Bradbury et al., 2016, p. 6). Importantly, carers agreed that safety of emergency responders and others involved should prevail when the person in crisis was engaging in threatened or actual violence, and that the use of a police caged vehicle for health care transport should be restricted to these circumstances (Brennan et al., 2016).

Carers perceived police as needing improved mental health expertise (Bradbury et al., 2016), and underscored the necessity of proper training on responding to mental health crises (Lyons et al., 2009). According to caregivers, mental health training should reinforce that people in crisis are not criminals, and should alleviate stigma directed towards mental illness by familiarizing officers with realistic expectations of what occurs during a crisis (Brennan et al., 2016). Carers felt police should learn negotiation skills, including ways of communicating with a person in crisis (e.g., reassurance, active listening, escalation avoidance); understand symptoms of mental illnesses; and be clear on protocols for use of force in crisis situations (Brennan et al., 2016; Mental Health Commission of Ireland & An Garda Síochána, 2009). Family carers endorsed police responses that were calm, patient, empathetic and communicative with both the person in crisis and the carer (Brennan et al., 2016). Carers also requested that mental health training for police provide insight into family members’ experiences through inclusion of caregivers in training (Mental Health Commission of Ireland & An Garda Síochána, 2009).

Theme 4: Invisible experts

A theme that was universally reported in all reviewed articles was the carers’ experience of feeling devalued and excluded during crisis interventions. Carers’ expressed frustration with not being listened to and felt their insights and concerns about their relative were dismissed, not sought, or not taken seriously by police or mental health service providers (MHPs) (Levine & Ligenza, 2002). Carers noted that they were the ones who managed their relatives’ mental illness while awaiting assistance; however, once these services were on scene, carers were restricted from further contribution (Bradbury et al., 2016). As an example, one carer described, “As soon as he was admitted to the ward I became a nobody, an outsider, but I’m not an outsider, I’m his mother!” (Wilkinson & McAndrew, 2008, p. 396). Carers are widely positioned as interlopers in crisis intervention, which has implications for their ability to influence outcomes (Stacey et al., 2016).

Family carers conveyed the subtheme that they possessed an intimate knowledge and familiarity of their loved one with mental illness compared to emergency responders and MHPs (Champlin, 2009). For instance, one carer explained, “You know what is normal for this person. You know what is abnormal. You are the people who know that and what you say should be taken seriously. This should be included as part of the initial assessment” (McAuliffe et al., 2009, p. 5). Often decisions made during police involvement or hospital admission impacted the whole family, yet there was a lack of inclusion of caregivers in decision-making during these interventions despite having knowledge to contribute (Clarke & Winsor, 2010). Carers expressed a need to be respected, communicated with, and be heeded by emergency service providers (Gavois et al., 2006).

A slow response or lack of access to mental health intervention during times of crisis was a common subtheme (Albert & Simpson, 2015). Carers perceived the dismissal of their concerns as contributing to treatment delay, further deterioration of their relative’s condition, and inevitable hospitalization (Jankovic et al., 2011). One carer illuminated this frustration as follows:

My son was becoming sick again and needed admission, they said that they would not admit him unless he had hit “rock bottom.” I was phoning them every day and was begging them to admit him as I could see that his condition was deteriorating. He had been roaming the streets for three days, had no food, hadn’t slept, had only a tee shirt on. If this is not rock bottom then what is … In the end he was picked up by the police (Shankar & Muthuswamy, 2007, p. 305).

Carers also described having to convince services that their relative was ill enough to warrant crisis intervention (Askey et al., 2009; Burns-Lynch, Murphy, Gill, & Brice, 2013; Tanskanen et al., 2011. Families desired rapid response and immediate accessibility to mental health resources in crisis (Lyons et al., 2009). Exceedingly lengthy wait times in the hospital emergency department were widely reported (Clarke, Dusome, & Hughes, 2007; Morphet et al., 2012).

Exclusion of carers served to contribute to feelings of isolation, being uninformed, and disempowered (Jankovic et al., 2011). Family members expressed a need to be recognized and supported in their own time of crisis (Clarke et al., 2007). Carers desired emergency responders and MHPs to acknowledge the impact the crisis had on the carers, and to feel cared for themselves (Wilkinson & McAndrew, 2008). In sum, caregivers widely sought to be valued, to be meaningfully included in the care of their relative, and to have their own needs acknowledged and supported.

Theme 5: “Need to know”

A final theme emerging from family carers centered on information-sharing and education on mental illness (Muhlbauer, 2002). Carers reported that having information about the condition and treatment of their family member was useful (Klevan et al., 2016). Carers expressed the need for truthful and accurate information about their loved one’s care; specifically, about diagnosis, symptoms, medications, side-effects, treatments, and legal status (Cerel et al., 2006). Information was most crucial early on at the time of first contact with mental health intervention (McAuliffe et al., 2009), as well as during crisis and at hospital discharge (Shankar & Muthuswamy, 2007). A lack of information left family carers feeling distressed, confused, and powerless (Clarke & Winsor, 2010; Wilkinson & McAndrew, 2008). Further, effective strategies to impart information to carers required improvement. Specifically, some carers received little or no information from MHPs, while others were given too much at once, which was overwhelming, particularly during the stress of crisis (McAuliffe et al., 2009). Notably, acquiring knowledge and learning about mental illness has been identified as a problem-focused method of coping among carers (Clarke & Winsor, 2010). Family carers who did obtain a greater awareness of mental illness gained a sense of empowerment that assisted them with understanding their relative and facilitated family interaction (Gavois et al., 2006).

Finally, challenges around privacy and confidentiality was a recurrent subtheme (Bradbury et al., 2016). “Patient confidentiality and privacy legislation was often experienced as a mechanism of exclusion for carers and their role in the treatment process” (McAuliffe et al., 2009, p. 6). Specifically, carers felt that patient confidentiality was sometimes a barrier to receiving essential information on medication, symptoms of illness, and where to get immediate assistance if needed (Shankar & Muthuswamy, 2007). Several family caregivers reported that MHPs would not interact with them because their relative had not consented to having information shared (Clarke & Winsor, 2010). Carers acknowledged that their family member had a right to privacy, but were critical of confidentiality when this policy hindered sharing of information they felt they had a “need to know” to optimize care, protect themselves from risks, or make informed decisions (McAuliffe et al., 2009, p. 6; Jankovic et al., 2011, p. 4). Often carers became disillusioned by challenges in obtaining adequate information from the mental health system. Some caregivers sought knowledge and support from self-help groups and families who had experienced similar challenges (Gavois et al., 2006).

Discussion

The present study identified, evaluated, and synthesized family carers’ lived experiences during an emergency mental health crisis. The five themes emerging from the review have implications for emergency mental health response practices. A critical finding of the review was that carers perceived the crisis of a family member and interaction with emergency response services as distressing. Caregivers often managed unsettling disruptive behavior and felt fear concerning their relative’s risk of harm. The carer experience leading up to seeking intervention was fraught with uncertainty about how to appropriately respond and where to seek help. Emergency responder and MHP understanding that carers experience deeply conflicted emotions in securing services may potentially improve interactions with caregivers by supporting reassuring and empathetic communication. It is recommended that confidential post-crisis outreach through online, telephone or follow-up visits be conducted to assess whether the carer themselves might benefit from being connected to support (Brennan et al., 2016).

Findings indicated that carers were apprehensive of police responding to mental health crises. Caregiver fear of disproportionate use of force against their loved one is consistent with research that has shown that those with mental illness are more likely to have force used against them by police (Kesic, Thomas, & Ogloff, 2012), or be killed in police encounters compared to the general population (Kesic, Thomas, & Ogloff, 2010). It is important to contextualize that such fatal incidents are rare, and the vast majority of police responses to mental health calls are resolved peacefully. Research has indicated, however, that officers are not adequately trained to meet the unique needs of citizens with emotional and mental health challenges (Cotton & Coleman, 2010). Contemporary police organizations have acknowledged this shortcoming and have consequently prioritized the improvement of police responses, such as through frontline officer training in mental health knowledge and de-escalation techniques (Coleman & Cotton, 2014). A growing number of police services have developed co-response models where specially trained officers respond to mental health calls jointly with an MHP to better meet rising demands (Brennan et al., 2016).

Carers’ concerns about unnecessary criminalization of their family member is consistent with evidence that people with mental illness experience higher arrest rates compared to the general population, often for minor offences (Brink et al., 2011; Coleman & Cotton, 2010). This contact has contributed to the over-representation of people with mental illness in the criminal justice system (Sapers & Zinger, 2012). Individuals with mental illness are unfairly stigmatized as unpredictable and dangerous (Alexander & Link, 2003), further contributing to potential criminalization as the public are more likely to call police when encountering a person behaving in a bizarre or disruptive manner. In practice, mental health incidents are known to be lengthier and resource-heavy calls for police, which may influence officers’ decisions to arrest to avoid long hospital wait times or hasten a return to law enforcement duties (Short, MacDonald, Leubbers, Ogloff, & Thomas, 2014). Still other officers arrest because they lack available community service alternatives for diversion (Franz & Borum, 2011).

A finding of the study was that carers felt that emergency responders required improved mental health training. Bradbury and colleagues (2016) reported that gentle, non-aggressive communication with a person in crisis was key to a positive interaction, and fostered rapport and compliance. A compassionate communication style was found to be more likely to arise when carers participated in the police encounter. Training principles such as those exemplified in the multi-module Training and Education about Mental health for Police Organizations (TEMPO; Coleman & Cotton, 2014) model have also been recommended. TEMPO focuses on knowledge and skills centered on: context and broader systems in which mental health interactions occur (e.g., stigma, relationship building, procedural justice,); nature and effects of mental illness; specific locale issues (e.g., fostering joint police/mental health agency relationships); intervention strategies (e.g., gentle communication skills, de-escalation techniques); risk assessment; use of discretion and ethical decision-making; and self-evaluation. Results of the present study advise that emergency responders be educated about the lived experience of carers to reduce unintended negative consequences, optimally by including family caregivers in training.

Procedural justice theory (Tyler, 1997) has been recommended as a framework to improve emergency responses toward people with mental illness (Livingston et al., 2014; Watson & Angell, 2007). Key elements of procedural justice include as follows: voice, the opportunity to present one’s side of the dispute and be heard by officers; neutrality, the perception that officers are unbiased in their decision-making; respect, being treated with respect and having one’s rights acknowledged by police; and trust that officers attempted to reach the best possible resolution for all parties involved (Tyler, 1997). Procedural justice has been argued to be important to victims’ confidence, support of police, and perception of being personally respected and valued (Wemmers, 1996). Given the important yet undervalued role of carers in interacting with emergency services during a crisis, sometimes as a victim, emergency responders should extend the principles of procedural justice to family carers. Caregivers may experience crisis interactions more positively if they are able to meaningfully participate and be heard, are treated with respect, and trust that the situation will be handled in a way that protects their well-being.

Study results underscored that family carers universally felt devalued and excluded by emergency responders and MHPs. Family carers asserted that they are a valuable resource who could provide vital information because of their knowledge and personal familiarity with their loved one. The issue of power dynamics amongst stakeholders in the context of mental health care is an important consideration. Clinicians have been traditionally viewed as holding paternalistic power over patients due to their status and education. In response, there has been a movement in recent years for the empowerment of patients as consumers in having the right to self-determination (Laugharne & Priebe, 2006). A similar movement among family caregivers to gain a stronger voice and increased participation in care has emerged (e.g., MacCourt et al., 2013). Stacey and colleagues (2016) have argued that the positioning of carers as “outsiders” may be used by the mental health system to maintain power over decision-making; yet at the same time, it may be used by carers to garner support for their inclusion.

Mental health services can legitimize family carers by recognizing and meaningfully including caregivers. Responders and MHPs may form a deeper understanding of the crisis by seeking and listening to caregiver insights (Wynaden, 2007). MacCourt and the Family Caregivers Advisory Committee for the Mental Health Commission of Canada (2013) developed 41 national guidelines for the mental health service system to support family caregivers of adults with mental illness. In this document, MacCourt and colleagues (2013) argued for the use of a “caregiver policy lens” in planning mental health services (p. 12). For acute care, they advised that the ER have a designated member available at all times to make mental health assessments. A family peer navigator should be assigned at the ER and admission to provide direct guidance, updates, and information to caregivers. To enhance inclusion in decision-making, protocols for a clear process of involving family carers in treatment, discharge and follow-up care should be established. MacCourt et al. also made a number of recommendations for MHP training to recognize and meet caregiver needs. For instance, MHPs should be trained to enhance their knowledge and sensitivity to the diverse range of family carers and related roles and challenges. Guidelines should be developed for MHPs to reach out to family carers, evaluate their needs, and offer opportunities for support. MHPs should also consistently encourage the inclusion of families while acknowledging privacy and confidentiality of the patient. Where a patient elects to exclude family carers, MHPs should investigate and discuss these reasons. Clear standards should be implemented for relaying basic and necessary information about the illness and its management to support the family carer without infringing patient confidentiality (MacCourt et al., 2013).

Meeting information needs of caregivers was a last major finding of the study. Information about specific mental illnesses and how to provide care should be made readily available to carers in multiple sites such as workplaces, hospitals, and the offices of physicians, counsellors and community services. Information should be available in a range of formats (e.g., online, print, face to face) and take into consideration varied mental health literacy, education, culture, language, and location of family carers (MacCourt et al., 2013). Up-to-date information and referrals about mental health, social, and community service resources should be provided (Clarke et al., 2007; Clarke & Winsor, 2010), including material about mental health apprehension and relevant legislation. Carers have requested practical education about early warning signs, relapse prevention, and how to manage and diffuse difficult behaviors (Askey et al., 2009). Timely referral and access to appropriate, evidence-informed education that addresses needs at different stages of the illness should be provided (MacCourt et al., 2013). For instance, MHPs could encourage carers to enroll in education programs such as those offered by the National Alliance on Mental Illness (NAMI).

There were some limitations to the present study. First, the strength of the integrative review (IR) design lies in the ability to incorporate studies of diverse methods into the analysis. However, the strategy to analyze and synthesize dissimilar studies can be challenging, and has not yet been well formulated in the literature (Soares et al., 2014). Soares and colleagues caution that IR requires rigor in every step of the study to avoid inaccuracy and bias in interpreting findings. Care was taken to ensure that selected studies responded to the research question and study inclusion was verified by a second coder. The present review synthesized studies that used thematic analysis (12 studies), Grounded Theory (6), phenomenological analysis (5), and mixed methods of quantitative and thematic analysis (2). Thematic analysis was selected to analyze the each study as all articles presented codable content; however, some studies were richer in detail than others. To ensure accurate conclusions were drawn, two coders were used for data codification, a focus was given to patterns of recurrent themes across multiple articles, and thematic presence of each article was clearly presented in table form. Additional limitations of the study were that the integrative review included only studies from Westernized cultures including North America (9), the United Kingdom (8), Australia (6), and Scandinavian countries (2), and thus, the generalizability of results is not global. Clearly, there are meaningful issues to explore among carers of people with mental illness in nations with diverse societal and health care structures. The majority of the participants in the review were Caucasian. Further research should be considered on the experiences of carers from families of ethnic minorities, as issues such as language and cultural barriers in interacting with crisis responders and MHPs become increasingly significant. Notably, carers sampled in the review were predominantly female. While the results speak to the majority of caregivers (i.e., mothers), additional research is needed to understand the experiences of males who care for ill family members. Finally, this review strictly focused on the perspective of the carer, and excluded the views of patients, emergency responders, MHPs, and other stakeholders who may likely provide different accounts of crisis events. Despite these limitations, the present review is valuable in understanding family carers experiences of emergency crisis and provides a basis for future research directions and potential practices.

In conclusion, family carers play a tremendous role in supporting a relative during a psychiatric crisis, initiating help-seeking and interacting with emergency mental health services. The role of both family carers and emergency responders in providing mental health intervention has heightened in recent years. Caregivers are often distressed by emergency service responses during times of crisis and have appealed for police and MHPs to enhance their understanding of the families’ experiences during these episodes. The mental health system players’ appreciation of the lived experiences and needs of family carers during emergency crises is vital in enhancing the quality of these interactions, fostering a compassionate approach, and recognizing and supporting caregivers.

Acknowledgments

I would like to acknowledge with gratitude the work of Jason B. Johnson as a research assistant on this project.

Additional information

Funding

This work was supported by the Social Sciences and Humanities Research Council of Canada under Grant 430-2015-00723.