Severe Childhood Autism: The Family Lived Experience

Gorlin, J.B. et al. Journal of Pediatric Nursing. Published online: October 6 2016


  • Several themes were identified in families caring for a child with severe autism including: the families experienced autism as a mysterious and complex condition, they lived with severe autism-related behavior, and dealt with profound communication challenges, stress, and isolation.
  • Families reported developing compassion for others related to their experience of living with a child with severe autism.
  • Families formed ‘hybrid families’ to assist with raising the child with autism including nuclear and extended family members, and friends.


This research examined the experiences of families living with a child with severe autism. There is limited literature on the experiences of families when a child has severe autism as distinct from milder autism and includes the voices of multiple family members.

Van Manen’s phenomenological approach was used for data collection and analysis. This approach allowed for the use of innovative data sources, including unstructured individual and family interviews, observations, and family lifelines (a pictorial, temporal picture with comments of the families lives).This study included 29 interviews with 22 participants from 11 families. All data were creatively triangulated and interpreted.

Six essential themes were identified. First, families experienced autism as mysterious and complex because it is an invisible and unpredictable condition with diagnostic challenges. Second, families described severe autism behaviors that often caused self-injury, harm to others and damaged homes. Third, profound communication deficits resulted in isolation between the family and child. Fourth, families discussed the unrelenting stress from lack of sleep, managing the child’s developmental delays, coordinating and financing services, and concern for the child’s future. Fifth, families described consequences of isolation from friends, school, the public, and health providers. Sixth, families portrayed their need for compassionate support and formed ‘hybrid families’ (nuclear, extended families and friends) to gain support.

Study results can be utilized to educate nurses/other providers about the unique needs of families with children with severe autism and could influence health care policies to improve the care for families caring for children with severe autism.

Read the abstract here


Effective psychological and psychosocial approaches to reduce repetition of self-harm: a systematic review, meta-analysis and meta-regression

Hetrick, S.E. et al. (2016) BMJ Open.6:e011024

Objective: To examine the efficacy of psychological and psychosocial interventions for reductions in repeated self-harm.

Design: We conducted a systematic review, meta-analysis and meta-regression to examine the efficacy of psychological and psychosocial interventions to reduce repeat self-harm in adults. We included a sensitivity analysis of studies with a low risk of bias for the meta-analysis. For the meta-regression, we examined whether the type, intensity (primary analyses) and other components of intervention or methodology (secondary analyses) modified the overall intervention effect.

Data sources: A comprehensive search of MEDLINE, PsycInfo and EMBASE (from 1999 to June 2016) was performed.

Eligibility criteria for selecting studies: Randomised controlled trials of psychological and psychosocial interventions for adult self-harm patients.

Results: Forty-five trials were included with data available from 36 (7354 participants) for the primary analysis. Meta-analysis showed a significant benefit of all psychological and psychosocial interventions combined (risk ratio 0.84; 95% CI 0.74 to 0.96; number needed to treat=33); however, sensitivity analyses showed that this benefit was non-significant when restricted to a limited number of high-quality studies. Meta-regression showed that the type of intervention did not modify the treatment effects.

Conclusions: Consideration of a psychological or psychosocial intervention over and above treatment as usual is worthwhile; with the public health benefits of ensuring that this practice is widely adopted potentially worth the investment. However, the specific type and nature of the intervention that should be delivered is not yet clear. Cognitive–behavioural therapy or interventions with an interpersonal focus and targeted on the precipitants to self-harm may be the best candidates on the current evidence. Further research is required.

Read the article here

Interventions for Adolescent Mental Health: An Overview of Systematic Reviews

Das, J.K. et al. (2016) The Journal of Adolescent Health. 59(4) pp. S49–S60

mental-health-1420801_960_720Many mental health disorders emerge in late childhood and early adolescence and contribute to the burden of these disorders among young people and later in life. We systematically reviewed literature published up to December 2015 to identify systematic reviews on mental health interventions in adolescent population.

A total of 38 systematic reviews were included. We classified the included reviews into the following categories for reporting the findings: school-based interventions (n = 12); community-based interventions (n = 6); digital platforms (n = 8); and individual-/family-based interventions (n = 12).

Evidence from school-based interventions suggests that targeted group-based interventions and cognitive behavioral therapy are effective in reducing depressive symptoms (standard mean difference [SMD]: −.16; 95% confidence interval [CI]: −.26 to −.05) and anxiety (SMD: −.33; 95% CI: −.59 to −.06). School-based suicide prevention programs suggest that classroom-based didactic and experiential programs increase short-term knowledge of suicide (SMD: 1.51; 95% CI: .57–2.45) and knowledge of suicide prevention (SMD: .72; 95% CI: .36–1.07) with no evidence of an effect on suicide-related attitudes or behaviors. Community-based creative activities have some positive effect on behavioral changes, self-confidence, self-esteem, levels of knowledge, and physical activity. Evidence from digital platforms supports Internet-based prevention and treatment programs for anxiety and depression; however, more extensive and rigorous research is warranted to further establish the conditions. Among individual- and family-based interventions, interventions focusing on eating attitudes and behaviors show no impact on body mass index (SMD: −.10; 95% CI: −.45 to .25); Eating Attitude Test (SMD: .01; 95% CI: −.13 to .15); and bulimia (SMD: −.03; 95% CI: −.16 to .10). Exercise is found to be effective in improving self-esteem (SMD: .49; 95% CI: .16–.81) and reducing depression score (SMD: −.66; 95% CI: −1.25 to −.08) with no impact on anxiety scores. Cognitive behavioral therapy compared to waitlist is effective in reducing remission (odds ratio: 7.85; 95% CI: 5.31–11.6). Psychological therapy when compared to antidepressants have comparable effect on remission, dropouts, and depression symptoms.

The studies evaluating mental health interventions among adolescents were reported to be very heterogeneous, statistically, in their populations, interventions, and outcomes; hence, meta-analysis could not be conducted in most of the included reviews. Future trials should also focus on standardized interventions and outcomes for synthesizing the exiting body of knowledge. There is a need to report differential effects for gender, age groups, socioeconomic status, and geographic settings since the impact of mental health interventions might vary according to various contextual factors.

Read the abstract here

Expanding the mental health workforce

Funding to expand the mental health workforce for children and young people

Health Education England (HEE) has received funding from the Department of Health to support NHS England in meeting national targets to expand the workforce providing children and young people’s mental health services. HEE has published information for service providers within and outside the NHS in England who wish to express their interest in accessing a fully-funded scheme to employ and train new staff to provide evidence-based treatment for children and young people.

NICE issues guidance on inappropriate sexual behaviour in children

NICE | Published online September 2016


This guideline covers children and young people who display harmful sexual behaviour, including those on remand or serving community or custodial sentences. It aims to ensure these problems don’t escalate and possibly lead to them being charged with a sexual offence. It also aims to ensure no-one is unnecessarily referred to specialist services.

‘Young people’ refers mainly to those aged 10 to 18 but also includes people up to 25 with special educational needs or a disability.

This guideline does not discuss people who have experienced sexual abuse. NICE will publish a guideline on child abuse and neglect in September 2017.


This guideline includes recommendations on:

Read the full guideline here

Expert reaction to conference abstract looking at whether excessive internet use may indicate mental health problems in college students

Science Media Centre | Published online: 17 September 2016


Unpublished work presented at the European College of Neuropsychopharmacology Congress (ECNP) has investigated possible associations between internet use and mental health issues in college students.

Dr Andrew Przybylski, Experimental Psychologist and Research Fellow at the Oxford Internet Institute, University of Oxford, said:

“This is a survey study which reports statistically significant correlations between a range of self report assessments reflecting psychopathology and a measure of so-called ‘internet addiction’. Though the topic is of importance and the researcher efforts are admirable, there are at least three reasons why this research should not inform policy or clinical practice.

“First, the findings from this survey are derived from a convenience sample of first-year Canadian undergraduates recruited though an anxiety research website. This means the sample is not representative of the Canadian population or college students who are not seeking help through an anxiety website. The findings therefore cannot “highlight that problematic internet use may be more widespread than once thought” because the sample cannot be generalised to the population. Indeed one might expect anxious or depressed individuals to use the internet differently than the general population.

“Second, the study is correlational and critical information regarding the size of the correlations is missing. In other words, it is not clear whether having psychological problems might lead to a high score on the internet addiction scale or vice versa. The most simple, and likely correct, interpretation of these observations is that anxious and depressed people have everyday issues that affect the way they use the internet, not the other way around. This problem is aggravated by the fact we only have information on statistical significance, but we cannot know if this is a inconsequential, small, or huge relationship. Because of this we cannot determine if this correlation is something to be worried about.

“Finally, the study appears to neglect to mention that the scale used to measure ‘internet addiction’ is not diagnostic of a professionally recognised psychiatric disorder. Indeed there is no such thing as ‘internet addiction’ according to the American Psychiatric Association. The self-report measure has been widely used in similar survey research but these cut-off scores are arbitrary. It is not clear what about the internet is addictive; is it gaming, commenting on social media, using Uber? This issue belies a larger important question of whether human communication can be ‘addictive’ in a clinical sense.”

Read the full commentary here


Mental Health and wellbeing of looked after children

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The Department of Health and Department of Education have published Mental health and wellbeing of looked-after children: Government response to the Committee’s Fourth Report of Session 2015-16.

This government response to the Education Committee report on the mental health and wellbeing of looked-after children addresses the committee’s recommendations and conclusions.