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

Figures & data

Figure 1. PRISMA flowchart.

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

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