Experiences of self-harm, suicidal ideation and mental health care among autistic youth.
Autistic youth experience high rates of self-harm and suicidal ideation, and substantial barriers to adequate mental health care. Research suggests that mental health services may not meet the needs of autistic individuals, though autistic youth experiencing self-harm and suicidal ideation are underrepresented in this literature. The present study aimed to explore experiences of self-harm, suicidal ideation and mental health care among a sample of autistic youth recruited through two Australian government-funded youth mental health services. Online interviews with seven autistic participants aged 15-23 years were transcribed and thematically analysed using a reflexive approach. Four themes and two subthemes were generated: (1) social rejection as risk, and connection as protection; (2) overwhelming emotions can lead to self-harm and hinder help-seeking; (3) feeling (mis)understood and (in)adequately accommodated by clinicians (comprising two subthemes related to poor understanding and accommodation of autism within mental health services); and (4) safety planning can feel like a box-ticking exercise. These findings highlight the importance of social connectedness as a protective factor against self-harm and suicidal ideation for autistic youth, and the necessity of improving understanding and accommodation of autism in mental health care settings and suicide interventions.Lay abstractAutistic people under the age of 25 experience high rates of self-harm and suicidal thoughts. Previous research has found that mental health care provided by professionals like psychologists might not meet the needs of autistic people. However, this research has usually focused on autistic adults, so less is known about the experiences of younger autistic people. In this study, we spoke with seven autistic young people aged between 15 and 23 years, and asked about their experiences of self-harm, suicidal thoughts and mental health care. Many participants had experienced social rejection or bullying, which contributed to their self-harm and suicidal thoughts. However, positive relationships with family, friends and others were a source of support when they were struggling. Self-harm was described as a way to cope with strong negative emotions, but many participants found it hard to talk about or describe those emotions, which made it difficult to get support. The help they received from psychologists for their self-harm and suicidal thoughts was impacted by how well the psychologist understood autism, and whether they were willing to accommodate the participants' individual needs and preferences. Participants had created suicide safety plans as part of the mental health care they received, but many felt like they had to do this just for the sake of doing it, rather than creating a plan that was truly helpful.
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3
- 10.1176/ps.2008.59.8.860
- Aug 1, 2008
- Psychiatric Services
In April 2003 the Alberta government integrated specialized mental health services, formerly organized independently, with the health regions, which are responsible for general health services. The objective of this article is to determine whether the transfer was associated with an increase or decrease in the share of resources in the region allocated to mental health care relative to total spending for health care. The measure of the share for mental health care is the total costs for mental health care resources as a percentage of total health care spending. Resources and spending examined were those that were actually or potentially under the regions' control. Annual costs for mental health services in the province were obtained for a seven-year period (fiscal year [FY] 2000 through FY 2006) from provincial utilization records for all residents in the province. Unit costs were assigned to each visit. The trend in the share measure was plotted for each year. The share for mental health care increased overall from FY 2000 (7.6%) to FY 2003 (8.2%), but returned to pre-FY 2003 levels in the three years after the transfer (7.6%). Despite concerns expressed before the transfer by federal and provincial reports over the level of expenditures devoted to mental health care, the integration of mental health services with other health services did not result in an increase of the share for mental health care.
- Front Matter
10
- 10.1027/0227-5910/a000852
- Feb 18, 2022
- Crisis
A Global Call for Action to Prioritize Healthcare Worker Suicide Prevention During the COVID-19 Pandemic and Beyond.
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29
- 10.1016/j.jadohealth.2021.09.022
- Oct 19, 2021
- Journal of Adolescent Health
Independent and Cumulative Effects of Recent Maltreatment on Suicidal Ideation and Thoughts of Self-harm in a National Sample of Youth
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5
- 10.1177/13623613221112202
- Jul 27, 2022
- Autism
Autistic children and adolescents experience high rates of co-occurring mental health conditions, including depression and suicidality, which are frequently identified by stakeholders as treatment priorities. Unfortunately, accessing community-based mental health care is often difficult for autistic youth and their families. The first obstacle families confront is finding a provider that offers mental health treatment to autistic youth within the many service systems involved in supporting the autism community. The mental health and developmental disability systems are two of the most commonly accessed, and previous work has shown there is often confusion over which of these systems is responsible for providing mental health care to autistic individuals. In this study, we conducted a telephone survey to determine the availability of outpatient mental health services for autistic youth with depressive symptoms or suicidal thoughts or behaviors in New York City across the state's mental health and developmental disability systems. Results showed that while a greater percentage of clinics in the mental health system compared with in the developmental disability system offered outpatient mental health services to autistic youth (47.1% vs 25.0%), many more did not offer care to autistic youth and there were very few options overall. Therefore, it is important that changes to policy are made to increase the availability of services and that mental health care providers' knowledge and confidence in working with autistic youth are improved.
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10
- 10.1007/s10597-022-01002-z
- Jul 28, 2022
- Community Mental Health Journal
Postpartum psychosis has been found to affect 0.89–2.6 per 1000 women. Onset is typically rapid and severe. Early recognition and appropriate treatment are crucial for a good prognosis. Our aim in this study was to understand women’s experiences of mental health care and services for psychosis in the postnatal period. Semi-structured interviews were conducted with 12 women who reported being treated for postpartum psychosis. Findings were analysed thematically. Women reported that healthcare professionals across maternity and mental health services often lacked awareness and knowledge of postpartum psychosis and did not always keep them or their partners/families informed, supported, and involved. Women wanted better collaboration between and within services, and more efficient, appropriate, and timely care. They valued inpatient services that could meet their needs, favouring Mother and Baby Units over general psychiatric wards. Early Intervention in Psychosis services and specialist perinatal community mental health teams were also well liked.
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29
- 10.1007/s00127-010-0314-z
- Nov 3, 2010
- Social Psychiatry and Psychiatric Epidemiology
Ethnic inequalities in experiences of mental health care persist in the UK, although most evidence derives from in-patient settings. We aimed to explore service users' and carers' accounts of recent episodes of severe mental illness and of the care received in a multi-cultural inner city. We sought to examine factors impacting on these experiences, including whether and how users and carers felt that their experiences were mediated by ethnicity. Forty service users and thirteen carers were recruited following an acute psychotic episode using typical case sampling. In-depth interviews explored illness and treatment experiences. Ethnicity was allowed to emerge in participants' narratives and was prompted if necessary. Ethnicity was not perceived to impact significantly on therapeutic relationships, and nor were there ethnic differences in care pathways, or in the roles of families and friends. Ethnic diversity was commonplace among both service users and mental health professionals. This was tolerated in community settings if efforts were made to ensure high-quality care. Home Treatment was rated highly, irrespective of service users' ethnicity. In-patient care was equally unpopular and was the one setting where ethnicity appeared to mediate unsatisfactory care experiences. These findings highlight the risks of generalising from reports of (dis)satisfaction with care based predominantly on in-patient experiences. Home treatment was popular but hard to deliver in deprived surroundings and placed a strain on carers. Interventions to enhance community treatments in deprived areas are needed, along with remedial interventions to improve therapeutic relationships in hospital settings.
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3
- 10.1007/s10488-020-01046-x
- May 15, 2020
- Administration and policy in mental health
Improving patient experience is one strategy that may increase the quality of mental health care if better experience is linked to the likelihood of a potentially therapeutic dose (PTD) of treatment. This study sought to examine: (1) the proportion of women veterans who obtained a PTD of mental health treatment; and (2) the association between women's experiences with Veterans Health Administration (VHA) mental health services and obtaining a PTD of mental health treatment. We assessed patient experience via a survey that measured experiences with gender-sensitive care, ease of getting care, perceived quality of care, and extent to which care met needs. We used VHA administrative data to determine mental health utilization across a national sample of 2109 women veterans with episodes of mental health care that included psychotherapy or pharmacotherapy. Results indicated that 71% of women received a PTD. Positive ratings regarding perceived quality of care and whether care met needs were associated with higher odds of receiving a PTD of treatment. Findings provide supporting evidence for the continued necessity of offering patient-centered mental health care to women veterans. Careful consideration of women veterans' mental health care experiences may be crucial in promoting high value mental health care for this population in VHA.
- Front Matter
3
- 10.1016/s0140-6736(13)61467-1
- Jun 1, 2013
- The Lancet
Section 136 and police custody—an unacceptable situation
- Report Series
2
- 10.1787/e45438b5-en
- Feb 15, 2022
Patient-reported measures are a critical tool for improving policy and practice in mental health care. However, to date, the use of patient-reported measures in mental health care is limited to a small number of countries and settings—and there is a pressing need, both within and across countries, to consistently and effectively measure the effects and impact of care for patients who use mental health care services. The PaRIS pilot data collection on mental health included 15 data sources from 12 countries, collected over the course of 2021. While the scope of included data varied, the results demonstrate increased adoption of national and subnational efforts to capture patient-reported information in mental health care systems. Analysis of data collected through the PaRIS mental health pilot documents, in general, positive patient-reported experiences of mental health care. The results also suggest improvement in patient-reported outcomes for those receiving mental health care services.
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22
- 10.1016/j.acap.2020.08.014
- Aug 25, 2020
- Academic Pediatrics
Policy Recommendations to Promote Integrated Mental Health Care for Children and Youth.
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3
- 10.1377/hlthaff.12.3.240
- Jan 1, 1993
- Health Affairs
Opportunities in mental health services research.
- Research Article
- 10.5334/ijic.icic23288
- Dec 28, 2023
- International Journal of Integrated Care
Introduction: While many service users have co-existing physical and mental health concerns, health professionals can tend to approach clients only through their single professional focus. This does not match service users lived experience of the dynamic relationship between physical, social and emotional health. ‘Diagnostic overshadowing’ refers to when clinicians only attend the presenting problem and fail to consider other important areas of health and wellbeing. For people living with mental illness this can result in poor health outcomes and substantially reduced life expectancy. This paper presents two studies investigating consumers perceptions and experiences of physical health and mental health care. Aims, Objectives, Theory or Methods: The aim of the research was to explore the experience of care of service users. In particular, the extent to which GPs, allied health and mental health professionals ask about domains outside their traditional professional sphere, such as physical health, mental health, and social wellbeing. Using a co-design, co-production approach this paper reports the results of a national survey on mental health consumers’ experience of GP, allied health and mental health care. It also presents a qualitative analysis of in-depth interviews with service users on their experiences of physical and mental health care. Highlights or Results or Key Findings: The quantitative analysis of survey data revealed approximately 1 in 5 mental health professionals asked about physical health. Similarly, only approximately 1 in 5 allied health professionals enquired about their clients’ social-emotional wellbeing. Disturbingly, when service users raised significant concerns about their physical health or the side-effects of medication, only 52 and 55% (respectively) of health professionals took these concerns seriously. The GP data was generally much better. However, only a low percentage of GPs asked about smoking or breast, prostate, or bowel cancer screening, all of which are major causes of premature mortality for people living with mental illness. The qualitative study of service users’ experiences revealed themes of stigma and discrimination combined with difficulty accessing services. It also revealed frustration about the lack of communication between the healthcare professionals. However, another emergent theme was the transformative power of affirming, considerate encounters with health professionals. Conclusions: These results demonstrate the importance of a whole-of-person, integrative approach from the consumer perspective. Diagnostic overshadowing and the consequent failure to consider potential co-existing health factors, misses an opportunity for comprehensive and connected care and may contribute to the increased incidence of premature death from chronic diseases for people with mental illness. Implications for applicability/transferability, sustainability, and limitations: These studies only report consumer experiences of their contact with health professionals. A survey of health professionals’ perspectives may provide different results. Nonetheless, the results point to the benefits of educating health professionals to widen their focus to consider and acknowledge the totality of the person; not just the presenting problem within their narrowly focussed professional remit.
- Research Article
62
- 10.1089/aut.2020.29013.sjc
- May 22, 2020
- Autism in adulthood
An Expert Discussion on Autism in the COVID-19 Pandemic.
- Discussion
11
- 10.1016/j.colegn.2022.05.001
- May 21, 2022
- Collegian
The personal cost of repetitive mental health inquiries that fail to result in change
- Research Article
17
- 10.1089/aut.2021.0069
- Dec 7, 2022
- Autism in Adulthood
Autistic adults have high rates of co-occurring health conditions, suicide, and premature mortality, yet often experience health care barriers and poor health outcomes. A better understanding of the health care needs and experiences of autistic adults is essential for improving the health care system and patient experience. This study examined the perspectives of autistic adults regarding their health care experiences in primary care and other settings and their suggestions for improvement using both qualitative and quantitative methods. Twenty autistic adults (aged 18-35 years, 65% male) completed surveys and individual semi-structured interviews. Qualitative data analysis results revealed 10 subthemes across 3 overarching themes: (1) system- and clinic-level factors affect access to care, (2) aspects of the clinic environment affect health care experiences, and (3) provider knowledge and practices affect health care experiences. Within the first theme, participants described barriers to obtaining services, including scheduling logistics, costs and inadequate insurance coverage, and transportation barriers. The second theme focused on aspects of the clinic environment that participants found especially relevant to their health care experiences and that required specific accommodations. This included sensory input, anxiety-provoking situations and procedures, and wait time. Within the third theme, participants emphasized aspects of providers' care that affected their health care experiences. Key factors included provider knowledge about autism, communication, rapport, and individualized care and patient-provider partnerships. Overall, the findings point to a need for provider training and improvements to the health care delivery system to better meet the unique needs of autistic adults.
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