The search yielded 3237 articles after the removal of duplicates. Out of the 48 studies selected for full-text screening, a further 38 were excluded due to not meeting the eligibility criteria. Two additional eligible studies were identified using forward citation tracking, resulting in a total of 12 studies included in the final synthesis. The search process is outlined in figure 1.
Table 1 shows the characteristics of included studies. The total number of carers included was 165, with sample sizes ranging from 3 to 31. Carers were predominantly female (60%), parents (63%), and from White ethnic backgrounds (68%). For data collection, studies utilised interviews (n=10), discussion groups (n=1) and a combination of both (n=1). All included studies were of high quality, with CASP scores ranging from 8 to 10 (median score = 8) out of a maximum score of 10.
Four overarching themes were identified: the emotional journey of inpatient care, invisible experts, carer views on quality of care for their loved one, and relationships & partnership (Table 2).
1. The Emotional Journey of Inpatient Care
The emotional journey of inpatient care was discussed in nearly all studies (n=10). 24—26, 32, 33, 45—47, 49, 51
1A. The build up to hospitalisation
The build up to hospitalisation was described as distressing and overwhelming, as carers find themselves having to juggle managing the deterioration of their loved one’s condition while navigating the mental health system to get help. Carers report feeling powerlessness and frustration that help was seemingly only made available once their loved one had deteriorated to a point where hospitalisation was inevitable.
“I mean one day he had me in tears, I had to walk out of the house and I just walked into the police station and I spoke to somebody on the desk, and they gave me a little bit of advice and they told me who to contact and stuff, and the next day I rang, I actually spoke to somebody but even that was a long process. I phoned them one day and they said they would get back to me and I said like, I need help now not like tomorrow or next week. I think like they got back to me three months later, it was really, really hard to get any kind of help to start with.”
1B. Hospital Care
Once their loved one was hospitalised, carers reported experiencing a mixture of conflicting emotions such as relief, guilt, fear, and hope. Carers were hopeful to obtain some respite from caregiving, and for their loved one to receive appropriate treatment and containment.
“Participants’ accounts of hospitalisation framed it overwhelmingly as an appropriate intervention that brought relief and respite. The young person was understood to be physically contained, with access to appropriate treatment, and hospital was seen as a place of safety, for self and society.”
Carers also reported a strong fear regarding the quality of inpatient care, their loved one’s safety, their ability to care for the service user after discharge, how they will be judged by others.
“The mothers expressed that they often felt as if they were being judged as parents who were trying to ‘get rid of the problem.’”
(Author & Carers)26
2. Invisible Experts
Carers’ feelings of invisibility and neglect by mental health professionals, as well as their exclusion from their loved one’s care during hospitalisation were reported as central to carer’s experiences with inpatient care across studies that took place in the UK, Canada and Australia (n=7). 24—26, 33, 47, 50, 51
2A. The invisibility & neglect of carer needs
Despite the significant emotion toll of the hospitalisation and a heightened need for support, carers report that their needs were seldom acknowledged and strongly perceived inpatient staff as unsupportive. Moreover, carers felt uniformed about the loved one’s treatment and wanted more information on mental illness and how to manage illness-related behaviours.
“Interestingly, the families clearly did not perceive staff as being supportive…they were seldom, if ever, acknowledged when they visited their child…when asked outright if they found the health care providers to be supportive, they answered resoundingly, ‘No’.”
Although rare (n=3), when carers did feel supported and were given the opportunity to obtain clear and accessible information, they found the inpatient experience more positive and reported tremendous relief. 25, 48,50
2B. Exclusion of carers from loved one’s care
Despite being expected to care for the service user throughout hospitalisation, and being experts in their own right, carers felt excluded from inpatient care. Carers want to be included in decision-making and found the lack of communication and information frustrating. Even when carers were invited to care planning meetings, they describe a resignation to their inability to affect change, as inpatient staff were deemed the sole experts. This was particularly contentious during discharge planning. Information sharing was also seen as non-reciprocal, with carers being relied on to provide information, but not being provided any in return. Confidentiality was cited as an issue here, with carers viewing it as an excuse used to exclude them.
“I wasn’t involved, I was an afterthought . . . no one told us anything, no one rang to keep us up to date with the plan of care. I only found out that he (son) had been started on an injection when he rang to tell me that he’d had a needle in his bum . . . How can I look after him at home if I don’t know what I’m supposed to be doing?”
Carers who were included in the treatment process (n=2) had considerably more positive views of the inpatient experience and felt empowered and confident to care for their loved one after discharge. 25,51
3. Carer concerns about quality of care for their loved one
Carers reported concerns about the quality of inpatient care across the majority of studies (n=7). 24, 26, 45, 48, 47, 50, 51 Carers spoke of dissatisfaction relating to delays, unmet service user needs, staff competence, the duration of hospitalisation, safety and the lack of space. As a result, carers felt that appropriate and timely help was not being provided. Carers were also displeased with the heavy focus on medicating the service user, noting that no one really spoke to their loved one.
“All she does is see a doctor once or twice a week. There’s no counsellor brought in […] She seriously needs to talk to somebody, not for 10 minutes, how you’re going, how you’re feeling, are you still seeing anything? That’s all she gets. She’s never actually sat down with anybody and just talked about anything.”
Moreover, carers views on staff competence and the degree to which they trusted the treatment plan played an important role in influencing views on care. They consistently spoke of disagreement with the duration of hospitalisation, and that sufficient help was not actually received during hospitalisation.
“This disagreement with the clinicians’ assessment regarding the level of professional support required was noticeable before discharge and it contributed to the burden of care shifted from services…More specifically, family caregivers commonly believed that the patient should have been admitted earlier or discharged later, and this was a concern reported mainly by family caregivers of patients with previous hospital admissions.”
4. Relationships & Partnership
Carers describe relationships between carers, service users and staff as being integral to their experiences of inpatient care (n=9). 24, 26, 33, 45—48, 50,51
4A. Carers & their loved one: Distance and strain
Carers reported that with the hospitalisation, a strain was placed on their relationship with the service user. For some, this was linked to blame, either from the service user blaming the carer for the hospitalisation, or the carer blaming the service user for their mental health difficulties.
“He had this great hatred of me, whatever it was, so it was very difficult for me, it was a great hate. And I think it stemmed from I was the one, I actually put him into the hospital.”
Others cited an inability to visit their loved one as often as desired due to practical difficulties such as other life responsibilities or rigid visiting hours, which was distressing for both parties.
“The more complicated public transport route, using more buses, the extra cost of the travelling, and the fact that “sometimes your benefits get reduced after you have been in [the hospital] for so long” were all issues relating to the location of the hospital, which was felt to prohibit regular visiting...””
(Authors & Carer)50
4B. Carers & staff: A desire for partnership
Carers relationship with staff also played an important role in their experience. They described the relationship as marked with tension and reported sensing a divide of “us vs them”, wherein they were viewed as threats, challenging, or nuisances. Nonetheless, carers consistently expressed a desire for partnership with staff, citing their belief that this would ultimately foster a better inpatient experience for both carers and service users. Carers felt that continuity of staff would facilitate partnership, as they would feel more at ease expressing themselves with staff they were familiar with.
“It’s about working together, the team knowing that I have valuable things to contribute and vice versa, because we all want the same at the end of the day.”
4C. Service users & staff: A need for affection
Equally important to carers was the relationship between service users and staff. They spoke of wanting staff to be more affectionate and caring to their loved one, to actively listen and talk to them, and to help them with self-care.
Amy was distressed that her husband would sometimes get “very upset going back to the [Old] hospital” after she had accompanied him outside the hospital on “leave”…if a member of staff took the time to talk to her husband, to welcome him back … her “husband would go in bouncy instead of going up to his room and crying, and that made a huge difference”.
(Authors & Carer)50