Psoriasis is a common condition with recognised psychological comorbidity in specialist practice. The objective of this study was to investigate the psychological comorbidities in psoriasis in patients from general (family) practices and specialist dermatology practices, using a qualitative methodology. This was a qualitative study, utilising semi-structured interviews and thematic analysis. Twenty-nine patients with psoriasis were recruited from general practices and specialist dermatology practices in an Australian non-capital city. Respondents represented a broad range of ages and psoriasis severities. The principle study finding was that psychological morbidity in psoriasis is considerable. Though mood and anxiety symptoms were present in participants, and were occasionally severe, more prominent sequelae of psoriasis were embarrassment, shame, impaired self-image, low self-esteem, self-consciousness and stigmatisation. Psoriasis was associated with behavioural avoidance and effects on respondents' sexuality. The perception of psoriasis as an incurable disease beyond respondents' control, with consequent pessimism regarding prognosis and treatment efficacy, was a contributor to psychological morbidity. Some respondents reported psoriasis having permanently and adversely affected their personality - avoidant personality traits were ascribed to the experience of living with psoriasis. Our conclusion is that the psychological effects of psoriasis can be considerable and long-lasting and are evident across a broad range of psoriasis severities. Clinicians should be aware that psychological sequelae are complex and encompass a range of psychological morbidities beyond conventional psychiatric diagnoses.
Background: Advance care planning aims to ensure that care received during serious and chronic illness is consistent with the person’s values, preferences and goals. However, less than 40% of people with dementia undertake advance care planning internationally. Aim: This study aims to describe the perspectives of people with dementia and their carers on advance care planning and end-of-life care. Design: Systematic review and thematic synthesis of qualitative studies. Data sources: Electronic databases were searched from inception to July 2018. Results: From 84 studies involving 389 people with dementia and 1864 carers, five themes were identified: avoiding dehumanising treatment and care (remaining connected, delaying institutionalisation, rejecting the burdens of futile treatment); confronting emotionally difficult conversations (signifying death, unpreparedness to face impending cognitive decline, locked into a pathway); navigating existential tensions (accepting inevitable incapacity and death, fear of being responsible for cause of death, alleviating decisional responsibility); defining personal autonomy (struggling with unknown preferences, depending on carer advocacy, justifying treatments for health deteriorations); and lacking confidence in healthcare settings (distrusting clinicians’ mastery and knowledge, making uninformed choices, deprived of hospice access and support at end of life). Conclusion: People with dementia and their carers felt uncertain in making treatment decisions in the context of advance care planning and end-of-life care. Advance care planning strategies that attend to people’s uncertainty in decision-making may help to empower people with dementia and carers and strengthen person-centred care in this context.
BackgroundPalliative care planning for nursing home residents with advanced dementia is often suboptimal. This study compared effects of facilitated case conferencing (FCC) with usual care (UC) on end-of-life care.MethodsA two arm parallel cluster randomised controlled trial was conducted. The sample included people with advanced dementia from 20 Australian nursing homes and their families and professional caregivers. In each intervention nursing home (n = 10), Palliative Care Planning Coordinators (PCPCs) facilitated family case conferences and trained staff in person-centred palliative care for 16 hours per week over 18 months. The primary outcome was family-rated quality of end-of-life care (End-of-Life Dementia [EOLD] Scales). Secondary outcomes included nurse-rated EOLD scales, resident quality of life (Quality of Life in Late-stage Dementia [QUALID]) and quality of care over the last month of life (pharmacological/non-pharmacological palliative strategies, hospitalization or inappropriate interventions).ResultsTwo-hundred-eighty-six people with advanced dementia took part but only 131 died (64 in UC and 67 in FCC which was fewer than anticipated), rendering the primary analysis under-powered with no group effect seen in EOLD scales. Significant differences in pharmacological (P < 0.01) and non-pharmacological (P < 0.05) palliative management in last month of life were seen. Intercurrent illness was associated with lower family-rated EOLD Satisfaction with Care (coefficient 2.97, P < 0.05) and lower staff-rated EOLD Comfort Assessment with Dying (coefficient 4.37, P < 0.01). Per protocol analyses showed positive relationships between EOLD and staff hours to bed ratios, proportion of residents with dementia and staff attitudes.ConclusionFCC facilitates a palliative approach to care. Future trials of case conferencing should consider outcomes and processes regarding decision making and planning for anticipated events and acute illness.Trial registrationAustralian New Zealand Clinical Trial Registry ACTRN12612001164886
Acne, psoriasis and atopic eczema are common diseases and have been consistently associated with adverse psychological sequelae including stigmatization. Being teased on the basis of appearance has been associated with psychiatric morbidity in children and adolescents. The objective of this qualitative study was to explore the experiences of teasing and bullying in patients with acne, psoriasis and eczema, and the role of appearance-related teasing and bullying as mediators of psychological morbidity in these patients. Data collection consisted of 62 in-depth semi-structured interviews with patients with acne, psoriasis or atopic eczema recruited from both specialist dermatology and general practices. Data analysis was cumulative and concurrent throughout the data collection period reflecting a grounded theory approach. Analysis followed the analytic induction method, allowing themes to emerge from the data. Teasing, taunting or bullying was a considerable problem for a significant minority of acne, psoriasis and atopic eczema participants. Themes that emerged were the universally negative nature of the teasing, the use of teasing as an instrument of social exclusion, and as a means of establishing or enforcing power relationships, teasing related to contagion and fear, the emotional and psychological sequelae of teasing and the theme of 'insensate' teasing. For those who had suffered teasing or bullying, this was causally linked in respondents' accounts with psychological sequelae, especially self-consciousness and effects on self-image and self-esteem. Experiences of teasing and bullying were found to have principally occurred during the adolescence of participants and the perpetrators were other adolescents, but there were findings of respondents with psoriasis also having been subjected to ridicule or derogatory remarks by health professionals. Teasing, taunting and bullying may represent an underappreciated source of psychological morbidity in children and adolescents with these common skin diseases.
BackgroundHealthcare professionals engage in discharge planning of people with dementia during hospitalisation, however plans for transitioning the person into community services can be patchy and ineffective. The aim of this study was to report acute, community and residential care health professionals’ (HP) perspectives on the discharge process and transitional care arrangements for people with dementia and their carers.MethodsA qualitative descriptive study design and purposive sampling was used to recruit HPs from four groups: Nurses and allied health practitioners involved in discharge planning in the acute setting, junior medical officers in acute care, general practitioners (GPs) and Residential Aged Care Facility (RACF) staff in a regional area in NSW, Australia. Focus group discussions were conducted using a semi-structured schedule. Content analysis was used to understand the discharge process and transitional care arrangements for people with dementia (PWD) and their carers.ResultsThere were 33 participants in four focus groups, who described discharge planning and transitional care as a complex process with multiple contributors and components.Two main themes with belonging sub-themes derived from the analysis were:Barriers to effective discharge planning for PWD and their carers - the acute care perspective: managing PWD in the acute care setting, demand for post discharge services exceeds availability of services, pressure to discharge patients and incomplete discharge documentation.Transitional care process failures and associated outcomes for PWD – the community HP perspective: failures in delivery of services to PWD; inadequate discharge notification and negative patient outcomes; discharge-related adverse events, readmission and carer stress; and issues with medication discharge orders and outcomes for PWD.ConclusionsAlthough acute care HPs do engage in required discharge planning for people with dementia, participants identified critical issues: pressure on acute care health professionals to discharge PWD early, the requirement for JMOs to complete discharge summaries, the demand for post discharge services for PWD exceeding supply, the need to modify post discharge medication prescriptions for PWD, the need for improved coordination with RACF, and the need for routine provision of medication dose decision aids and home medicine reviews post discharge for PWD and their carers.
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