In Their Own Words: Improving Services and Hopefulness for Families Dealing with BPD

Buteau, Ellie; Dawkins, Kevin; Hoffman, Perry D.

doi:10.4324/9781003063872-16

Cited by 6 publications

(22 citation statements)

References 1 publication

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“…Community services Examine crisis care preferences of community-dwelling adults with BPD Qualitative study Thematic analysis of crisis plans Participants gave clear statements in their crisis plans about the desire to recover from the crisis and improve their social functioning. Key themes included: the desire to be treated with dignity and respect; to receive emotional and practical support from clinicians; and preferences for treatment refusals during crises such as, psycho-tropic medication and involuntary treatment Buteau et al 2008 [ 1 ] ***** Carers of people with BPD/ families (N = 12). Males (n = 2), and females (n = 10) To learn from families what their experiences have been in four key areas: (1) knowledge about BPD, (2) BPD treatments, (3) coping with BPD, and (4) reasons for hope Qualitative study Semi-structured interviews Families identified five key areas of concern: (1) difficulty accessing current evidence-based knowledge about BPD/ treatments, (2) a stigmatizing health care system, (3) prolonged hopelessness, (4) shrinking social networks, and, (5) financial burdens.…”

Section: Methodsmentioning

confidence: 99%

“…Consumers with BPD [ 3 , 7 , 65 , 69 , 71 , 72 , 112 , 117 ] and their carers/families [ 1 , 2 , 4 , 10 , 42 , 62 , 73 , 123 ] have consistently reported experiencing discrimination and stigma from health services in response to the BPD diagnosis. Lawn et al’s [ 3 , 4 ] quantitative studies found that consumers with BPD reported experiencing high levels of anxiety associated with ‘discrimination due to their BPD diagnosis’ (58%, n = 67) and ‘not being taken seriously’ (71%, n = 82) by health practitioners.…”

Section: Key Findingsmentioning

confidence: 99%

“…Consumers with BPD and their carers/families frequently access health services in crisis [ 3 , 4 , 10 , 65 ] and consequently, experience widespread discrimination, prejudice, and stigma in health systems [ 1 – 4 , 7 , 8 , 10 , 16 , 19 , 33 – 35 , 39 , 42 , 45 , 47 – 53 , 55 , 57 , 62 , 65 , 68 , 69 , 71 – 73 , 76 , 77 , 84 – 86 , 88 , 89 , 104 , 106 – 123 ]. A recent review described BPD-related crises as a recurrent multidimensional cycle of suicidality, help-seeking, and health service utilization, linked to the experience of distress among consumers with BPD, their carers/families, and health practitioners [ 35 ].…”

Section: Key Findingsmentioning

confidence: 99%

“…There is a growing body of research exploring the experiences of BPD-related stigma among consumers with BPD [ 3 , 7 – 9 , 34 , 35 ] and their carers/families [ 1 , 2 , 11 ] when accessing health services. Consumers with BPD consistently report receiving suboptimal levels of care from health services including not being believed or dismissed in relation to the nature and severity of their presentation [ 3 ].…”

Section: Introductionmentioning

confidence: 99%

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Structural stigma and its impact on healthcare for borderline personality disorder: a scoping review

Klein

Fairweather

Lawn

2022

Int J Ment Health Syst

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Background People with Borderline Personality Disorder (BPD) and their carers/families continue to experience structural stigma when accessing health services. Structural stigma involves societal-level conditions, cultural norms, and organizational policies that inhibit the opportunities, resources, and wellbeing of people living with attributes that are the object of stigma. BPD is a serious mental illness characterized by pervasive psychosocial dysfunction including, problems regulating emotions and suicidality. This scoping review aimed to identify, map, and explore the international literature on structural stigma associated with BPD and its impact on healthcare for consumers with BPD, their carers/families, and health practitioners. Methods A comprehensive search of the literature encompassed MEDLINE, CINAHL, PsycINFO, Scopus, Cochrane Library, and JBI Evidence-Based databases (from inception to February 28th 2022). The search strategy also included grey literature searches and handsearching the references of included studies. Eligibility criteria included citations relevant to structural stigma associated with BPD and health and crisis care services. Quality appraisal of included citations were completed using the Mixed Methods Appraisal Tool 2018 version (MMAT v.18), the Joanna Briggs Institute (JBI) Checklist for Systematic Reviews and Research Syntheses Tool, and the AGREE II: advancing guideline development, reporting, and evaluation in health care tool. Thematic Analysis was used to inform data extraction, analysis, interpretation, and synthesis of the data. Results A total of 57 citations were included in the review comprising empirical peer-reviewed articles (n = 55), and reports (n = 2). Studies included quantitative, qualitative, mixed methods, and systematic review designs. Review findings identified several extant macro- and micro-level structural mechanisms, challenges, and barriers contributing to BPD-related stigma in health systems. These structural factors have a substantial impact on health service access and care for BPD. Key themes that emerged from the data comprised: structural stigma and the BPD diagnosis and BPD-related stigma surrounding health and crisis care services. Conclusion Narrative synthesis of the findings provide evidence about the impact of structural stigma on healthcare for BPD. It is anticipated that results of this review will inform future research, policy, and practice to address BPD-related stigma in health systems, as well as approaches for improving the delivery of responsive health services and care for consumers with BPD and their carers/families. Review Registration: Open Science Framework (https://osf.io/bhpg4).

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Section: Methodsmentioning

confidence: 99%

Section: Key Findingsmentioning

confidence: 99%

Section: Key Findingsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Structural stigma and its impact on healthcare for borderline personality disorder: a scoping review

Klein

Fairweather

Lawn

2022

Int J Ment Health Syst

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“…The principle outcome was to ascertain whether psychoeducation can improve the mental well-being of carers and reduce carer burden (McFarlane et al, 2003(McFarlane et al, , 2012. Carers often report feelings of isolation within the healthcare system due to the lack of information around diagnosis, financial difficulties, a sense of hopelessness and a system that can stigmatise carers (Buteau et al, 2008).…”

Section: Introductionmentioning

confidence: 99%

Can a carer (peer) led psychoeducation programme improve mental health carers well-being, reduce burden and enrich empowerment: a service evaluation study

Chiocchi

Lamph

Slevin

et al. 2019

JMHTEP

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Purpose Carers of people with mental health problems present with high levels of burden, poor mental well-being and feelings of disempowerment by mental health services. The purpose of this paper is to establish whether providing a psychoeducation skill programme for carers would lead to an improvement of mental well-being, reduce the levels of burden that carers sometimes feel while caring for someone with mental illness and also to increase empowerment. This paper provides a service evaluation study of an innovative carer-led psychoeducational intervention that was undertaken. Design/methodology/approach This programme was initiated and led by a carer who had experienced a lack of service provision to support carers and families in understanding and caring for a relative with severe and enduring mental health diagnoses. A model of co-production was adopted with the carer who led this initiative working closely with an occupational therapist and consultant psychologist in its development and delivery. Data were collected to measure the impact of the training at five different time points. The measures employed to measure outcomes were the Warwick-Edinburgh Mental Well-being Scale, the Burden Assessment Scale and Family Empowerment Scale. Findings Results indicated improved well-being, reduced burden and increased family empowerment in carers who completed this peer-led carer initiative psychoeducational programme. Research limitations/implications This service evaluation study was conducted in a single site and in the site in which it was developed. The carer consultant who led this evaluation and development of the intervention was also the peer worker who delivered the interventions. Hence, the authors are unable to ascertain if the results reported are unique to the individual peer worker. The transferability of this programme and generalisability of the result should therefore be treated with caution and further replication of this model and research is required. This would be beneficial to be conducted in an alternative site from where it was developed, delivered by different facilitators and include a control group. Practical implications The evidence from this study indicates that carers are able and willing to attend a group psychoeducational programme. A high number of referrals to the programme in a relatively short timeframe indicates that there is significant demand for such a service. The implementation of the programme is relatively straightforward. The key challenges for practical implementation are to have the right carer to lead and deliver the programme and the right support system in place for them (financial and supervision). Co-production also is not without challenges, the peer worker and occupational staff need to ensure that mutually valued and respected working relationship should develop. Originality/value This is the first evaluation of the impact of a carer-led psychoeducation intervention for carers of people with mental health difficulties in secondary mental health services.

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The relationship between social support, coping strategies and psychological distress and positive mental well-being in carers of people with borderline personality disorder

Hayes,

Dempsey,

Kells

et al. 2023

bord personal disord emot dysregul

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Background Informal carers of people with BPD experience high levels of burden and psychological distress relative to other populations. There is a scarcity of research evidencing the influence of modifiable factors on carer outcomes to inform interventions. This study aimed to investigate the relationship between social support, coping strategies and psychological distress and positive mental well-being in this carer population. Methods In this cross-sectional study, 1207 carers completed the McLean Screening Instrument for BPD-Carer Version, the Brief COPE, the Multidimensional Scale of Perceived Social Support, the Kessler Psychological Distress scale, the WHO-5 Well-being Index, and the Coronavirus Anxiety Scale. Data for 863 participants who met the inclusion criteria were analysed. Results Carers reported low positive mental well-being and high psychological distress. Perceived social support and several coping strategies were significant unique predictors of psychological distress and positive mental well-being. Perceived social support and positive reframing were the strongest predictors of higher positive mental well-being and lower psychological distress. Self-blame, behavioural disengagement and substance use were the strongest predictors of adverse outcomes. Conclusions The findings evidence modifiable factors that may be used to improve informal carer outcomes and indicate that carer interventions may be improved by focusing on reducing the use of self-blame, behavioural disengagement and substance use, and development of quality social support and skills to positively reframe caregiving situations.

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In Their Own Words: Improving Services and Hopefulness for Families Dealing with BPD

Cited by 6 publications

References 1 publication

Structural stigma and its impact on healthcare for borderline personality disorder: a scoping review

Structural stigma and its impact on healthcare for borderline personality disorder: a scoping review

Can a carer (peer) led psychoeducation programme improve mental health carers well-being, reduce burden and enrich empowerment: a service evaluation study

The relationship between social support, coping strategies and psychological distress and positive mental well-being in carers of people with borderline personality disorder

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