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Mental Health Service User and Carer Perspectives Among Adults Aged 18-64 with

Schizophrenia

Student’s Name

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Instructor’s Name

Date
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Abstract

This report covered the examination of mental health service users and carers’ perspectives on
living with schizophrenia. The primary social group considered is constituted by adults aged 18-
64 in the UK with schizophrenia. The report deployed a qualitative approach and analysed
previous studies based on various themes including living with schizophrenia diagnosis,
implications attributable to stigma, experiences with various medications and interventions, the
efficacy and adequacy of mental health services, and factors facilitating psychological resilience
to suicidal thoughts and behaviours. Based on the findings, a significant section of affected
individuals reports social exclusion, limited access to relevant services, stigmatization, ethnic
disparities, and medication side effects among other challenges. Carers also experience major
challenges especially in terms of limited professional support. These challenges have significant
implications on access to relevant interventions thus unfavourably impacting treatment
outcomes. The report also evaluated the efficacy of mental health services as well as the
adequacy of support services were. In general, the report’s findings suggest a critical need for
more compassionate, person-centred, and stigma-free approaches to schizophrenia treatment.
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Table of Contents
Abstract............................................................................................................................................2

Introduction......................................................................................................................................4

The Experience of Schizophrenia in Adults Aged 18-64 in the UK................................................4

Overview of Impact on the Lives of Service Users.....................................................................4

Service User Perspectives on Mental Health Services for Schizophrenia...................................5

Carer Perspectives on Mental Health Services for Schizophrenia...............................................6

Support Mechanisms in the Recovery Process................................................................................6

Pharmacological Interventions.....................................................................................................6

Psychological Interventions.........................................................................................................7

Other Support Mechanisms..........................................................................................................7

Equality of Access to Mental Health Services.................................................................................8

Ethnic Minority Inequalities in Access to Treatments.................................................................8

Factors Contributing to Psychological Resilience to Suicidal Thoughts and Behaviours...........9

Evaluation of Mental Health Services for Schizophrenia..............................................................10

Efficacy of Mental Health Services for Schizophrenia..............................................................10

Adequacy of Support Services for Schizophrenia.....................................................................10

Conclusion.....................................................................................................................................11

Bibliography..................................................................................................................................13
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Introduction

Essentially, schizophrenia denotes a severe mental illness affecting individuals’ thoughts

and feelings as well as their behavioural tendencies. This in turn results in significant

impairments in daily functioning. The condition is considerably complex and impacts a

significant section of the UK population. This report presents a critical examination of the

perspectives of mental health service users and carers on living with schizophrenia among adults

aged 18-64 in the UK. The findings are based on qualitative data drawn from previous studies on

the topic with the primary focus being on the description of the condition's impact on the lives of

those affected, views of service users and carers on services and support mechanisms

constituting the recovery process, and the extent to which these services and support mechanisms

meet the diverse needs of the social group. The paper also includes an evaluation of the

effectiveness of mental health services in supporting individuals with schizophrenia with the

consideration of the equality of access to these services.

The Experience of Schizophrenia in Adults Aged 18-64 in the UK

Overview of Impact on the Lives of Service Users

Schizophrenia is linked to negative symptoms such as apathy and social withdrawal

which can in turn have a significant impact on the daily lives of service users. As noted by,

Butcher et al. (2020, p. 320), these symptoms can cause a loss of motivation, a decreased interest

in activities as well as difficulty initiating and maintaining social interactions. Also, stigma and

discrimination can exacerbate the impact of the illness on service users’ lives. Various studies

identify stigma as a common experience for people with mental health problems resulting in

social isolation, discrimination, and limited access to appropriate services (Huggett et al., 2018,

p. 4). For instance, in the study by Huggett et al. (2018), participants explained that their
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diagnoses exposed them to labels that exposed them to stigmatising views. For example,

Participant 7 noted that phrases like “I’m mentally ill” exposed them to stigma. On the other

hand, Participant 6 said, “If you got cancer, sympathy…Any kind of physical illness, you will get

sympathy. But mental illness…you won’t get sympathy” (Hugget et al., 2018). It is also

imperative to note that schizophrenia diagnosis can be a traumatic experience for service users.

Some of them may be stigmatised by the diagnosis thus prompting a sense of shame and

hopelessness (Howe et al., 2014, p. 156). However, in other cases, diagnostic conformation is

regarded as a relief given that it provides an explanation for the affected individuals’ experiences

and help access appropriate treatment.

Notably, in spite of the challenges associated with living with the condition, some service

users demonstrate considerable resilience. Some studies indicate that factors like having

supportive relationships, engagement in meaningful activities, and development of coping

strategies can contribute to psychological resilience as well as reduce the risk of suicidal

thoughts and behaviours (Harris et al., 2019, p. 6).

Service User Perspectives on Mental Health Services for Schizophrenia

The experiences of service users with schizophrenia mental health services for in the UK

are considerably mixed. For instance, Das-Munshi et al. (2018) found that ethnic minority

service users have lower access to mental health services and receive less appropriate treatment

for schizophrenia than their white counterparts. In contrast, some service users report positive

experiences with the services in question, like receiving effective treatment and having

supportive relationships with mental health professionals. The availability of medications for

symptom management also constitutes a key determinant of these perspectives as explained.

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A significant section of service users reports negative experiences. Some of these

experiences include feeling disempowered and not being listened to by mental health

professionals. For example, in the study by Wagstaff et al. (2018, p. 163), participants identified

as Bubbles and Black Zee said respectively “I just leave them alone, leave people to sort their

own minds out” and “... tell people to just leave me alone, leave me alone to live my life.” These

participants feel that the best way for mental health service providers to help them is by leaving

them alone. Also, findings from the same study indicate that black men with a history of

disengagement from mental health services felt that services were not culturally responsive or

adequately addressing their needs (Wagstaff et al., 2018, p. 165). Other users report a lack of

continuity and coordination of care (Carswell et al., 2022). This causes feelings of frustration and

confusion.

Carer Perspectives on Mental Health Services for Schizophrenia

In essence, carers fulfil an instrumental responsibility in supporting service users living

with schizophrenia. Family carers are subject to experiencing significant stress and anxiety

related to their role, as well as feelings of isolation and a lack of support. In addition, a section of

carers report frustration with the quality of mental health services with factors such as long

waiting times and a lack of continuity of care being some of the common concerns.

In spite of the negative experiences, some positive perspectives are also notable. For

instance, some carers acknowledge receiving practical support and having positive relationships

with mental health professionals (Carswell et al., 2022, p. 10). It is worth noting that carers are

usually not mental health professionals and are thus dependent on proper support. As such, their

relationship with mental health professionals significantly impacts their perspectives on the

effectiveness of the mental health services available to schizophrenia service users in the UK.
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For instance, one of the carers interviewed in a study noted that they found it difficult to deal

with drastically changing conditions of the patients they cared for stating that, “I drink every

day. And depending how my mental health is especially, it depends on you know, how much I’m

drinking. So, when things are better, I sort of have like a measured amount. Whereas, when

things are not good, it’s just escapism really” (Carswell et al., 2022, p. 5). This is a credible

example of the difficulties carers face especially when caring for affected individuals without

professional assistance.

Support Mechanisms in the Recovery Process

Pharmacological Interventions

Pharmacological interventions are often the first line of treatment for schizophrenia. In

this case, antipsychotic medications are commonly used in the management of positive

symptoms like delusions and hallucinations as well as apathy and social withdrawal among other

negative symptoms. However, the use of antipsychotic medication is subject to some side effects.

Some of the common side effects include weight gain and movement disorders among other. As

such, careful monitoring and assessment of the medication’s benefits and side effects are

essential.

A study by Read and Sacia (2020) provided open-ended questions to individuals with

schizophrenia regarding their experiences with antipsychotic medication. Based on the findings,

many individuals felt that the medication did not adequately address their symptoms or improve

their quality of life. Some of the participants’ responses included: “Antipsychotics took away the

best years of my life”, “Basically makes life unliveable, pointless, and increases suffering”,

“These medications are disabling”, “They are dehumanizing”, “Antipsychotics are poisons”

(Read & Sacia, 2020, p. 901). Others noted that service providers did not condone any kind of
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medication reduction thus worsening their negative experiences. Also, some participants reported

feeling that they had no choice but to take the medication regardless of the side effects and

concerns about long-term use.

Psychological Interventions

Psychological interventions like cognitive-behavioural therapy (CBT) and family therapy

can help individuals with schizophrenia manage their symptoms and improve their quality of life.

CBT facilitates the ability to confront and modify negative thoughts and beliefs that may be

contributing to the symptoms in question. On the other hand, family therapy focuses on

improving communication and reduce stress within the family system.

In a study by Lloyd et al. (2017), the authors found that family therapy was particularly

beneficial with regard to improving communication and relationships within the family. The

study findings also demonstrated the perception of family therapy as a way to enhance family

members’ understanding of the illness as well as its impact on the individual with schizophrenia.

In addition, some carers noted positive results from psychological interventions. One carer

stated, “He can rationalise…although he hears the voices he has a sense of reality” (Lloyd et al.

2017, p. 4). This statement is indicative of the perceived positive outcomes by carers taking care

of patients.

Other Support Mechanisms

In addition to pharmacological and psychological interventions, a variety of other support

mechanisms are available to individuals with schizophrenia. Notable examples include

community-based services like peer support groups, vocational training, and supported housing.

In this case, it is crucial to consider the user, carer and healthcare professional perspectives
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regarding the self-management of symptoms. A study by Carswell et al. (2022, p. 10) found that

those with co-existing severe mental illness and long-term conditions are susceptible to

substantial self-management challenges as a result of the competing demands linked to their

psychiatric symptoms and treatment, support access, and social circumstances.

On the other hand, stigma forms a significant issue given its profound implications on

individuals’ ability to access and benefit from support mechanisms (Huggett et al., 2018, p. 18).

Stigma can thus result in considerable disengagement from mental health services. Some studies

characterize stigma as a major barrier to seeking and accessing services with a significant

proportion of those affected reporting feeling disrespected and unsupported by mental health

professionals (Wagstaff et al. 2018, p. 165). Consequently, a significant number of individuals

are discouraged from seeking appropriate mental health interventions.

Equality of Access to Mental Health Services

Ethnic Minority Inequalities in Access to Treatments

Whereas the general adult population with schizophrenia experience major challenges, it

is crucial to consider the disproportional distribution of some of these challenges in question. In

this context, it is worth noting that ethnic minority inequalities in access to mental health services

constitute a longstanding issue in the UK. According to Das-Munshi et al. (2018, p. 2), ethnic

minorities in the UK are less likely to access treatments for schizophrenia and schizoaffective

disorders compared to their white counterparts. The inequalities are attributable to various factors

including language barriers, cultural differences, and institutional racism.

In addition, language barriers also pose a significant problem especially for ethnic

minorities with limited English language skills. This makes it difficult for them to effectively
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communicate their symptoms to healthcare professionals. Further, the impact of cultural

differences should not be overlooked given that some ethnic minorities may have different

beliefs and attitudes towards mental health and seek treatment through traditional healers or

religious leaders (Das-Munshi et al., 2018, p. 7). Lastly, institutional racism is characterized by

ethnic minorities facing discrimination and prejudice when trying to access mental health

services.

Notably, these inequalities are linked to severe consequences including delayed or

inadequate treatment characterized by worsened symptoms, longer hospital stays as well as

increased mortality rates. Therefore, it is essential that mental health services address pertinent

challenges by focusing on the provision of equal access to treatments for all individuals

irrespective of one’s ethnicity or cultural background.

Factors Contributing to Psychological Resilience to Suicidal Thoughts and Behaviours

Suicidal thoughts and behaviours constitute a significant concern for individuals with

schizophrenia with a significant section of those affected reporting suicidal ideation at some

point in their lives (Harris et al., 2019, p. 6). However, not everyone that experiences suicidal

thoughts and behaviours goes on to attempt suicide. Findings from a qualitative study by Harris

et al. (2019) identified some of the factors contributing to psychological resilience that would in

turn mitigate suicidal tendencies. Some of the identified factors include social support, a sense of

purpose or meaning in life, positive coping strategies as well as sense of hope moving into the

future. The study further identified social support as among the key critical factors. In this case,

affected individuals are considerably dependent on supportive family members, friends, and

healthcare professionals in helping them manage their symptoms and stay safe during times of

crisis.
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Evaluation of Mental Health Services for Schizophrenia

Efficacy of Mental Health Services for Schizophrenia

Effective mental health services for schizophrenia should focus on reduction of the

negative symptoms associated with the illness, improving quality of life, and promoting

recovery. However, the subjective experiences of negative symptoms among individuals with

schizophrenia are often overlooked in mental health services (Butcher et al., 2020, p. 321).

Negative symptoms like emotional blunting and social withdrawal, can significantly impair an

individual’s functioning and quality of life. As such, mental health services should prioritise

addressing negative symptoms and focus on providing individualized care tailored according to

each service user's specific needs.

Further, as aforementioned, the significant ethnic minority inequalities hinger effective

access to treatments for schizophrenia and schizoaffective disorders in the UK. In essence, ethnic

minority groups often face multiple obstacles including language barriers, cultural differences,

and discrimination as they try to access mental health services (Das-Munshi et al., 2018, p. 2). In

light of these issues, mental health services should prioritise providing equitable access to

treatments for individuals from ethnic minority backgrounds to ensure that they receive the same

quality of care as the majority population.

Adequacy of Support Services for Schizophrenia

Basically, adequate support services play an instrumental role in facilitating effective

illness management and promotion of recovery. In this case, psychological resilience is crucial in

helping individuals cope with suicidal thoughts and behaviours (Harris et al., 2019, p. 6). This

reiterates the need for mental health services to prioritise the development of resilience-building
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programs that will in turn support affected individuals in effectively managing their mental

health.

Also, affected individuals often have co-existing physical health conditions that require

additional support from healthcare services (Carswell et al., 2022, p. 11). This highlights the

need for coordinated care integrating both mental and physical healthcare services. Therefore,

the development of integrated care programs to provide comprehensive support for

schizophrenia and co-existing physical health conditions is critical.

Conclusion

In summary, mental health service users and carers’ perspectives are essential for

understanding the experiences of individuals affected by schizophrenia both directly and

indirectly. In this case, negative symptoms such as anhedonia and apathy mount significant

challenges for mental health service users and their carers. In addition, access to mental health

services is not equal for all ethnic groups. A section of studies show that some individuals face

stigmatization in the process of receiving a diagnosis of schizophrenia. These challenges have

considerable implications for the effectiveness of mental health interventions and the subsequent

improvement or worsening of symptoms and disease burden for both service users and carers.

It is imperative to note that the efficacy of mental health services for schizophrenia and

access to adequate support services are critical considerations. In addition, psychological

resilience can also play a pivotal role in the prevention of suicidal thoughts and behaviours

among affected individuals. The critical role of family carers in treatment outcomes as well as

their perspectives should be considered in the design and deployment of relevant mental health

services.
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Bibliography

Butcher, I., Berry, K. & Haddock, G. (2020) 'Understanding individuals' subjective experiences

of negative symptoms of schizophrenia: A qualitative study', British Journal of Clinical

Psychology, 59(3), pp.319-334, dOI:10.1111/bjc.12248

Carswell, C. et al. (2022) 'The lived experience of severe mental illness and long-term

conditions: a qualitative exploration of service user, carer, and healthcare professional

perspectives on self-managing co-existing mental and physical conditions', BMC

Psychiatry, 22(1), pp.1-14

Das-Munshi, J., Bhugra, D. & Crawford, M. J. (2018) 'Ethnic minority inequalities in access to

treatments for schizophrenia and schizoaffective disorders: findings from a nationally

representative cross-sectional study', BMC Medicine, 16(1): 55. doi: 10.1186/s12916-

0181035-5

Harris, K. et al. (2019) 'Factors that contribute to psychological resilience to suicidal thoughts

and behaviours in people with schizophrenia diagnoses: qualitative study', BJPsych Open,

5:e79, pp.1–9. doi: 10.1192/bjo.2019.63

Howe, L., Tickle, A. & Brown, I. (2014) '‘Schizophrenia is a dirty word’: service users'

experiences of receiving a diagnosis of schizophrenia', The Psychiatric Bulletin, 38(4),

pp.154-158. doi: https://doi.org/10.1192/pb.bp.113.045179

Huggett, C. et al. (2018) 'A qualitative study: experiences of stigma by people with mental health

problems', Psychology and Psychotherapy: Theory, Research and Practice, 91(3),

pp.380–397. https://onlinelibrary.wiley.com/doi/epdf/10.1111/papt.12167
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Lloyd, J. et al. (2017) 'Treatment outcomes in schizophrenia: qualitative study of the views of

family carers', BMC Psychiatry 17:255.

https://link.springer.com/article/10.1186/s12888017-1418-8

Read, J. & Sacia, A. (2020) ‘Using open questions to understand 650 people’s experiences with

antipsychotic drugs’, Schizophrenia Bulletin, 46(4), pp.896–904 .

https://doi.org/10.1093/schbul/sbaa002

Wagstaff, C. et al. (2018) 'Experiences of mental health services for ‘black’ men with

schizophrenia and a history of disengagement: A qualitative study', International Journal

of Mental Health Nursing, 27(1), pp.158–167. doi: 10.1111/inm.12305