The Intruder of the Mind

Puffer, Keith A.

doi:10.1093/schbul/sbq052

Cited by 2 publications

(6 citation statements)

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“…All individuals with lived experiences of psychosis, family members, and carers involved in the project were invited to be co-authors. Our final selection of sources included 38 first-person accounts from Schizophrenia Bulletin [ 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 ] and 10 other sources including autobiographical books, qualitative research reports, and book compilations [ 9 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 ]. Overall, the sample from included sources is comprised of 192 participants ( n = 133 female, n = 54 male, n = 5 gender non-specified).…”

Section: Methodsmentioning

confidence: 99%

“…When a response emerged, it was at times experienced as insufficient [30] and not personalized to the practical needs of the family [33,67,70]. Other familiar sources of frustration for families included receiving contradictory messages from fragmented services [26,65], the lack of continuity in care [39,67,71], and support following hospital discharge [35]: "My experience with the mental health services has been that there is no awareness of the need for continuity -the staff in our centre seem to change almost monthly" [67]. Mental health advocacy was a coping strategy that some families found to channel their anger and frustration towards pursuing better treatments and regaining a sense of agency in the healthcare system [33,40,66].…”

Section: Dealing With the Loss Of A Relationship And Navigating The S...mentioning

confidence: 99%

“…As noted above, the communication problems may arouse intense feelings of guilt [66]: "I felt guilty because I could neither ease his suffering nor give him the confidence he lacked so dramatically" [25]. On the other hand, carers and family members often feel afraid of the unpredictable -at times aggressive [25,27,35,38,42,59, 67] -responses of the person [26,38,68]. A member of our collaborative team commented: "One big theme is families not knowing how to communicate with the person.…”

Section: Feeling Invisible and Wanting To Be Active Partners Inmentioning

confidence: 99%

“…At times, the unpredictability leads to a sense of entrapment [29,64]. Also, unpredictability leads carers to be in a state of permanent anxiety [25] or vigilance, in expectancy of the following "bad news" [34,42,46], including the everpresent risk of self-harm or suicide [35,46,64,67]. As such, family members have to learn that uncertainty about the future is an integral part of their experience of psychosis [25,65].…”

Section: Fighting Stigma and Isolationmentioning

confidence: 99%

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The Lived Experiences of Family Members and Carers of People with Psychosis: A Bottom-Up Review Co-Written by Experts by Experience and Academics

et al. 2023

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Informal caregivers of individuals affected by psychotic disorder can play a key role in the recovery process. However, little research has been conducted on the lived experiences of carers and family members. We conducted a bottom-up (from lived experience to theory) review of first-person accounts, co-written between academics and experts by experience, to identify key experiential themes. First-person accounts of carers, relatives, and individuals with psychosis were screened and discussed in collaborative workshops involving individuals with lived experiences of psychosis, family members, and carers, representing various organizations. The lived experiences of family members and carers were characterized by experiential themes related to dealing with the unexpected news, the search for a reason behind the disorder, living with difficult and negative emotions, dealing with loss, feeling lost in fragmented healthcare systems, feeling invisible and wanting to be active partners in care, struggling to communicate with the affected person, fighting stigma and isolation, dealing with an uncertain future, and learning from one’s mistakes and building resilience and hope. Our findings bring forth the voices of relatives and informal carers of people with psychosis, by highlighting some of the common themes of their lived experiences from the time of the initial diagnosis and throughout the different clinical stages of the disorder. Informal carers are key stakeholders who can play a strategic role, and their contributions in the recovery process merit recognition and active support by mental health professionals.

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Section: Methodsmentioning

confidence: 99%

Section: Dealing With the Loss Of A Relationship And Navigating The S...mentioning

confidence: 99%

Section: Feeling Invisible and Wanting To Be Active Partners Inmentioning

confidence: 99%

Section: Fighting Stigma and Isolationmentioning

confidence: 99%

See 2 more Smart Citations

The Lived Experiences of Family Members and Carers of People with Psychosis: A Bottom-Up Review Co-Written by Experts by Experience and Academics

et al. 2023

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“…Ten months from the first hospitalization, mum went into heart failure; extensive cardiac damage led to her passing at the age of 56." Puffer K. Schizophr Bull 2010;36:651-654 171.…”

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confidence: 99%

Schizophrenia--Time to Commit to Policy Change

Fleischhacker

Arango

Arteel

et al. 2014

Schizophrenia Bulletin

180

109

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Care and outcomes for people with schizophrenia have improved in recent years, but further progress is needed to help more individuals achieve an independent and fulfilled life. This report sets out the current need, informs policy makers and all relevant stakeholders who influence care quality, and supports their commitment to creating a better future. The authors recommend the following policy actions, based on research evidence, stakeholder consultation, and examples of best practice worldwide. (1) Provide an evidence-based, integrated care package for people with schizophrenia that addresses their mental and physical health needs. (2) Provide support for people with schizophrenia to enter and to remain in their community, and develop mechanisms to help guide them through the complex benefit and employment systems. (3) Provide concrete support, information, and educational programs to families and carers on how to enhance care for an individual living with schizophrenia in a manner that entails minimal disruption to their lives. (4) All stakeholders, including organizations that support people living with schizophrenia, should be consulted to regularly revise, update, and improve policy on the management of schizophrenia. (5) Provide support, which is proportionate to the impact of the disease, for research and development of new treatments. (6) Establish adequately funded, ongoing, and regular awareness-raising campaigns that form an integral part of routine plans of action. Implementation of the above recommendations will require engagement by every stakeholder, but with commitment from all, change can be achieved.

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The Intruder of the Mind

Cited by 2 publications

References 0 publications

The Lived Experiences of Family Members and Carers of People with Psychosis: A Bottom-Up Review Co-Written by Experts by Experience and Academics

The Lived Experiences of Family Members and Carers of People with Psychosis: A Bottom-Up Review Co-Written by Experts by Experience and Academics

Schizophrenia--Time to Commit to Policy Change

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