Family members’ experiences of seeking help for a young person with symptoms associated with the psychosis spectrum: A narrative review and synthesis

Stigma-Related Burden

Stigma was implicitly and explicitly mentioned across all papers reviewed. Several accounts attributed stigma as an overarching barrier to help-seeking attempts (McCann et al., 2011; Baron et al., 2019). In three studies, family members spoke of how their own stigmatised attitudes toward psychosis acted as initial barriers to help-seeking. Stigma associated feelings included shame, fear, and embarrassment (McCann et al., 2011; Baron et al., 2019; Mayer et al., 2022). These feeling fuelled fear of judgement from others, including extended family members, friends, and neighbours (McCann et al., 2011; Kapur et al., 2014; Mayer et al., 2022). Caregivers recalled a fear of being blamed for something going “wrong”, which acted as a deterrent from seeking informal support from those closest to them (McCann et al., 2011, p.549). Feelings of shame held by the young person themselves were also discussed: “I think he was embarrassed” (Baron et al., 2019, p.763). Stigma was echoed in narratives suggesting their loved one was hostile toward their efforts to seek help on their behalf (Corcoran et al., 2007), with self-stigma acting as a further barrier to accessing timely care.

Limited Knowledge of Psychosis Spectrum Symptoms

A sense of ‘not knowing’ surrounding psychosis and USEs was frequently highlighted: “I didn’t know anything about it” (Cadario et al., 2012, p.91). Factors associated with the cause of psychosis and USEs included age and stage of development (Corcoran et al., 2003, 2007; Cadario et al., 2012), stress (Parry & Varese, 2021a, 2021b; Mayer et al., 2022) and substance use (Corcoran et al., 2007; Mayer et al., 2022). These attributions often led to delays in seeking help due to dual stigmas associated with parenting and circumstances. Furthermore, limited mental health literacy contributed to uncertainty surrounding how and where to access support, delaying help-seeking further (Cadario et al., 2012; Chen et al., 2016).

Lack of Trust in Services

One study highlighted family members who actively avoided medical and mental health services for fear of the outcome: “GPs will not be very informed, will not refer you to the right services” (Parry & Varese, 2021a, 2021b, p.213). While another found that negative past experiences of inpatient mental health services contributed to lasting distrust and reluctance to seek help from similar services on subsequent occasions (Gerson et al., 2009).

Absence of Crisis

Five out of the 12 studies reviewed discussed the reaching of a ‘crisis point’ as a catalyst to seeking support from mental health services (Corcoran et al., 2007; Gerson et al., 2009; Cadario et al., 2012; Chen et al., 2016; Tindall et al., 2018). This crisis point tended to result from an escalation in symptoms, which caused families to feel overwhelmed: “My putting him in the hospital was my cry for help too” (Gerson et al., 2009, p.813). Reaching a crisis point appeared to provoke dramatic increases in help-seeking, seemingly helping families overcome barriers to help-seeking, such as stigma: “When she made a suicide attempt…it was like she just has to get help…I didn’t care about labels” (Chen et al., 2016, p.125). Therefore, the absence of crisis may act as a barrier to help-seeking. Formal mental-health support may be considered earlier by families if psychosis and USEs were less stigmatised, and if the importance of early intervention for symptom management were better understood (Corcoran et al., 2007).

Difficulty Sourcing Services

Sourcing support involved multiple agencies and significant wait times (Cadario et al., 2012). Family experiences of UK CAMHS echoed this frustration: “CAMHS is a long wait and hard to get through to” (Parry & Varese, 2021a, 2021b, p.214). However, upon finding services, family members often experienced relief, characterised by expressing strong emotions: “I just burst into tears” (McCann et al., 2012, p.227). In cases where engagement involved involuntary admission to hospital, family members experienced this relief as “traumatic yet necessary” (Gerson et al., 2009, p.813). Interestingly, exhaustion and grief did lead to seeking help from family and religious sources in one study (Corcoran et al., 2003).

Gaps in Services

A significant gap in services was observed for young people: “zero services are available for someone experiencing voices so young” (Parry & Varese, 2021a, 2021b, p.213). Age-related difficulties surrounding diagnoses and accurate medication prescription were also reported (Chen et al., 2016). Being unable to access targeted support raised concerns surrounding whether care received was age-appropriate: “no way he should ever have been in a place like that when he was 16…but they had nowhere else to put him” (Cadario et al., 2012, p.90). Narratives from parents in one paper suggested their teenage child was treated as an adult: “I think [clinicians] just assume that because they’re [accessing services] they’re adults and they’re old enough to deal with their own things” (McCann et al., 2012, p.228). For individuals living in the UK, where specialist support is not typically available for USEs until age 14, obtaining appropriate support was especially difficult, contributing to a narrative of frustration and injustice: “…support is almost non-existent and I just can’t understand how that’s OK” (Parry & Varese, 2021a, 2021b, p.213). An overwhelming desire for services to be tailored to younger children was detected throughout four of the 12 papers reviewed (McCann et al., 2011, 2012; Cadario et al., 2012; Parry & Varese, 2021a, 2021b).

Lack of Continuity

A lack of continuity in services was voiced in five studies (Cadario et al., 2012; Kapur et al., 2014; Chen et al., 2016; Tindall et al., 2018; Parry & Varese, 2021a, 2021b): “We kept on getting sick of telling our same story to different people” (Cadario et al., 2012, p.100). This lack of continuity was also highlighted between services and suggested limited knowledge of psychosis spectrum symptoms and USEs amongst primary medical services: “[GP] wasn’t very helpful. She kind of just was like ‘Right. I don’t know how to handle you’” (Tindall et al., 2018, p.180). Themes of limited continuity were especially prominent following discharge from inpatient services, with family members reporting unclear arrangements and information (Kapur et al., 2014). This resulted in family members feeling under-supported, “very alone, and having to fend for themselves” (Chen et al., 2016, p.126).

Family Exclusion

Within family narratives, feeling excluded from provisions of care was expressed in seven studies (Corcoran et al., 2003; Corcoran et al., 2007; Gerson et al., 2009; McCan et al., 2012; Kapur et al., 2014; Tindall et al., 2018; Parry & Varese, 2021a, 2021b): “I feel like I’m being left out” (Kapur et al., 2014, p.7). Although the importance of confidentiality was recognised, frustration was expressed nonetheless: “There’s issues of patient confidentiality…but then there’s the issue of parents out there, who have no clue as to what is happening with their child” (Gerson et al., 2009, p.814). This concern raised conflict, as they often regarded themselves as ultimately responsible for the young person’s wellbeing (McCann et al., 2012). In turn, family members described how their wellbeing could be compromised by feeling excluded, suggesting their important contribution as carers was often dismissed: “I don’t want to just be the taxi” (Tindall et al., 2018, p.182). When asked for recommendations for improving services, family members wished to feel empowered and involved throughout treatment (Parry & Varese, 2021a, 2021b).

Themes of disjointedness were also observed once services were accessed, characterised by an absence of age-appropriate support, feeling excluded from provisions of care, and a lack of continuity between each stage of signposting and receiving support. Families described feelings of dissatisfaction with support available and heightened impact upon family wellbeing.

Emotional Impact

Upon early detection of change, experiences of feeling helpless and scared were raised: “It was really scary…there was nothing anyone could do” (Cadario et al., 2012, p.97). In one paper, while most family members were alarmed by specific symptoms, generally, the nature rather than the presence of USEs caused the greatest distress (Parry & Varese, 2021a, 2021b). In another, many family members’ accounts highlighted feelings of failure and guilt as they retrospectively reflected upon early signs they may have missed: “when you look back, it all added up” (Cadario et al., 2012, p.86). One source of anxiety amongst family members was caused by a lack of confidence and self-belief to help their loved one (Gerson et al., 2009), indicating feelings of disempowerment. A strong emotional impact on family members was reported across all of the reviewed literature.

Diminished Hope for the Future

One paper highlighted concerns about what a diagnosis meant in terms of prognosis and recovery: “I probably felt sorry for myself, thinking…what are we gonna do?” (Tindall et al., 2018, p.181), whereas another emphasised a strong sense of anger: “Now we have to deal with this ‘s' word [schizophrenia]… and I am angry” (Gerson et al., 2009, p.814). Even after accessing support from services, continued concern for their loved one and future prospects was prominent (Cadario et al., 2012), with lacking reliable information exacerbating these worries (Parry & Varese, 2021a, 2021b). There also seemed to be a tension between wanting to be hopeful, but describing ‘guarded hope’, for example “I want to be optimistic but I feel maybe she can only be helped so much and then this will happen again. I fear she will backslide. My only hope is that she will be happy and enjoy life” (Corcoran et al., 2003, p.329).

Isolation

There were mixed accounts surrounding whether sharing their loved one’s difficulties with a wider circle was beneficial; participant accounts from two papers suggested it allowed for social buffers to be built against stigma, reducing isolation (McCann et al., 2011; Chen et al., 2016), whereas others felt sharing with those who had stigmatised pre-conceptions could lead to further social exclusion (McCann et al., 2011), again highlighting the protruding impact of stigma. Families sought to find commonality, explaining the usefulness of gaining experiential knowledge from those with similar experiences (Cadario et al., 2012; Baron et al., 2019; Parry & Varese, 2021a, 2021b). Despite this, one paper indicated some families simultaneously disclosed a reluctance to access parent groups due to logistical challenges and not wanting to be “put on the same level” as others perceived as being in worse situations (Baron et al., 2019, p.764). While family members rarely voiced feeling isolated explicitly, isolation ran through their stories (Mayer et al., 2022).

Relationships Strains

Themes of close relational strains were raised across five papers (Corcoran et al., 2007; Gerson et al., 2009; Kapur et al., 2014; Parry & Varese, 2021a, 2021b; Mayer et al., 2022): “we argued behind closed doors about how we should react” (Parry & Varese, 2021a, 2021b; p.214). Mothers in particular voiced struggling to access support within the family system (Parry & Varese, 2021a, 2021b), some in one paper describing their partners as “emotionally absent” (Mayer et al., 2022, p.10). Very few discussed sibling involvement, however those that did, indicated strains on sibling relationships (Parry & Varese, 2021a, 2021b). Parent-child relationships were also impacted; parents described wanting to keep their child close (Mayer et al., 2022). However, escalation of symptoms frequently created a physical and emotional distance as primary care was handed over to specialist services, leaving a sense of loss: “one woman prayed to understand why her son had become like a stranger” (Corcoran et al., 2007, p.312). Family members wished for more holistic care from services to support with these difficulties (Corcoran et al., 2003; Kapur et al., 2014).

Growing from Experiences

Despite a large proportion of narratives suggesting a negative impact, in three papers, narratives indicated some alleviation of these impacts by feeling they had “grown from their experiences” through challenging their own negative pre-conceptions (Cadario et al., 2012; McCann et al., 2012; Mayer et al., 2022, p.11). Suggestions that their own personal involvement demystified the phenomenon and led to acceptance were prevalent: “it can happen to anyone” (Cadario et al., 2012, p.91). Others reported growth of self-confidence through developing an assertive approach to help-seeking, which provided hope for accessing future support (McCann et al., 2012).