Severe mental illness and palliative care: patient semistructured interviews

Knippenberg, Inge; Zaghouli, Nasira; Engels, Yvonne; Vissers, Kris; Groot, Marieke

doi:10.1136/bmjspcare-2019-002122

Cited by 11 publications

(9 citation statements)

References 31 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Many people living with SPMI have little to no informal support; this can be family or friends that undertake an unpaid carer role throughout their lives. This loss can add further complexity when they are diagnosed with a severe medical condition or life-limiting illness [ 14 , 16 , 18 , 22 , 26 , 28 , 38 , 39 , 40 , 47 , 49 , 68 , 73 , 84 , 85 , 86 ], and attempting to navigate systems on their own [ 14 ]. Advocacy is essential to respect end-of-life advance care directives when a person has no informal supports [ 18 , 49 ].…”

Section: Resultsmentioning

confidence: 99%

NDIS Participants with Psychosocial Disabilities and Life-Limiting Diagnoses: A Scoping Review

Boschen

Phelan

Lawn

2022

IJERPH

View full text Add to dashboard Cite

This research aimed to map evidence about system supports and gaps for Australians with psychosocial disabilities and life-limiting diagnoses. A scoping review of available policy documents, academic, and grey literature was completed to discover key characteristics of this concept and provide context around the phenomenon. Our focus was on Australia’s National Disability Insurance Scheme (NDIS), a key reform providing support to the disability population nationally. No peer-reviewed or grey literature was retrieved on the phenomena. Therefore, three lines of enquiry were developed: experiences of NDIS participants living with psychosocial disabilities; the death, dying, and palliative care supports and experiences of NDIS participants of any disability type; and the experiences for people living with severe and persistent mental illness (SPMI) and life-limiting diagnoses. Five themes were identified: (1) the person; (2) advocacy; (3) informal supports; (4) formal supports; and (5) existing research. NDIS participants living with SPMI and their informal and formal support systems are still struggling to navigate the NDIS. While there are no specific publications about their end-of-life experiences, people with SPMI often experience poor end-of-life outcomes. Rigorous research into their death, dying, and palliative care experiences is needed to inform improved support to them, including their end-of-life care.

show abstract

Section: Resultsmentioning

confidence: 99%

NDIS Participants with Psychosocial Disabilities and Life-Limiting Diagnoses: A Scoping Review

Boschen

Phelan

Lawn

2022

IJERPH

View full text Add to dashboard Cite

show abstract

“…However, what this review highlights is that mental health staff, many of whom find talking about death and dying with patients difficult, find that when opportunities are found patients are receptive. Knippenberg et al 96 report that patients with severe mental illness and additional severe physical health issues do not routinely speak, or think, about end-of-life issues but when probed by researchers they did then discuss the terminal phase of life. In the wider context of the coronavirus pandemic we observe how mental health staff are increasingly being exposed to dying and death, leading to important new guidance for professionals and their support in this area.…”

Section: Discussionmentioning

confidence: 99%

End of life care for people with severe mental illness: Mixed methods systematic review and thematic synthesis (the MENLOC study)

et al. 2021

View full text Add to dashboard Cite

Background: Parity of esteem means that end-of-life care for people with severe mental illness should be of equal quality to that experienced by all. Aim: To synthesise international, English language, research and UK policy and guidance relating to the organisation, provision, and receipt of end-of-life care for people with severe mental illness. Design: A mixed methods systematic review was conducted following the Evidence for Policy and Practice Information and Co-ordinating Centre approach and informed by a stakeholder group. We employed thematic synthesis to bring together data from both qualitative and quantitative studies, and from non-research material. We assessed the strength of synthesised findings using the Confidence in the Evidence from Reviews of Qualitative Research (CERQual) and Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approaches. Data sources: Ten electronic databases were searched from inception to December 2019, along with 62 organisational websites. Quality appraisal was conducted using Critical Appraisal Skills Programme checklists or other study design-specific alternatives as necessary. Results: Of the 11,904 citations retrieved, 34 research publications were included plus 28 non-research items. The majority of research was of high or acceptable quality. An overarching synthesis including 52 summary statements, with assessments of confidence in the underpinning evidence, was produced using four themes: Structure of the system; Professional issues; Contexts of care; and Living with severe mental illness. Conclusions: Implications for services and practice reflect evidence in which there is a high degree of confidence. Partnership should be developed across the mental health and end-of-life systems, and ways found to support people to die where they choose. Staff caring for people with severe mental illness at the end-of-life need education, support and supervision. End-of-life care for people with severe mental illness requires a team approach, including advocacy. Proactive physical health care for people with severe mental illness is needed to tackle problems of delayed diagnosis.

show abstract

“…Operational definition of severe mental illness (SMI) Within this study, there is recognition of the lack of an accepted consensus definition for SMI. However, it was necessary to have an operational definition, and within this study, people with SMI are defined as individuals who experience reduced general functioning due to their psychiatric disease, being in need of specialist care and having received such care for at least two years [3,[22][23][24]. Hypothetically, all psychiatric diagnoses could present with SMI; however, the major diagnosis groups are schizophrenia, bipolar disorder and personality disorder [24].…”

Section: Aimmentioning

confidence: 99%

“…This population are often diagnosed with terminal conditions much later than members of the general population [ 2 ]. Severe mental illness (SMI) is any psychiatric disorder that is not transient (i.e., it persists for a long period) that requires care/treatment and is associated with severe social and societal limitations [ 3 ]. Previous research has highlighted the palliative care needs of people with SMI are under-recognised and under-treated [ 4 , 5 ], occurring most frequently only in relation to crisis management.…”

Section: Introductionmentioning

confidence: 99%

“…Previous research has highlighted the palliative care needs of people with SMI are under-recognised and under-treated [ 4 , 5 ], occurring most frequently only in relation to crisis management. Thus, understanding the palliative care needs of people with SMI and developing services which recognise and respond to their needs is required [ 3 ].…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Co-Design of an Evidenced Informed Service Model of Integrated Palliative Care for Persons Living with Severe Mental Illness: A Qualitative Exploratory Study

2021

View full text Add to dashboard Cite

Background: Globally, close to one billion people are living with a mental health disorder, and it is one of the most neglected areas in Public Health. People with severe mental illness have greater mortality risk than the general population, experience health care inequalities throughout life and represent a vulnerable, under-served and under-treated population, who have been overlooked in health inequality research to date. There is currently a dearth of evidence in relation to understanding the palliative care needs of people with severe mental illness and how future care delivery can be designed to both recognise and respond to those needs. This study aims to co-design an evidenced informed service model of integrated palliative care for persons living with a severe mental illness. Methods: This qualitative sequential study underpinned by interpretivism will have six phases. An expert reference group will be established in Phase 1, to inform all stages of this study. Phase 2 will include a systematic literature review to synthesise current evidence in relation to palliative care service provision for people with severe mental illness. In Phase 3, qualitative interviews will be undertaken with both, patients who have a severe mental illness and in receipt of palliative care (n = 13), and bereaved caregivers of people who have died 6–18 months previously with a diagnosis of severe mental illness (n = 13), across two recruitment sties in the United Kingdom. Focus groups (n = 4) with both mental health and palliative care multidisciplinary staff will be undertaken across the two recruitment sites in Phase 4. Phase 5 will involve the co-design of a service model of integrated palliative care for persons living with severe mental illness. Phase 6 will develop practice recommendations for this client cohort. Discussion: Palliative care needs to be available at all levels of care systems; it is estimated that, globally, only 14% of patients who need palliative care receive it. Reducing inequalities experienced by people with severe mental illness is embedded in the National Health Service Long Term Plan. Internationally, the gap between those with a mental illness needing care and those with access to care remains considerable. Future policy and practice will benefit from a better understanding of the needs of this client cohort and the development of a co-designed integrated care pathway to facilitate timely access to palliative care for people with a severe mental illness.

show abstract

Severe mental illness and palliative care: patient semistructured interviews

Cited by 11 publications

References 31 publications

NDIS Participants with Psychosocial Disabilities and Life-Limiting Diagnoses: A Scoping Review

NDIS Participants with Psychosocial Disabilities and Life-Limiting Diagnoses: A Scoping Review

End of life care for people with severe mental illness: Mixed methods systematic review and thematic synthesis (the MENLOC study)

Co-Design of an Evidenced Informed Service Model of Integrated Palliative Care for Persons Living with Severe Mental Illness: A Qualitative Exploratory Study

Contact Info

Product

Resources

About