PSY2004 S2 W7 Current Issues Flashcards
(70 cards)
What is a problem associated with the approach used in past research?
Historically, research has involved researchers forming hypotheses and then seeking out certain populations to test these hypotheses
They then analyse their data and publish their conclusions relating to that population
The research decides what is important by doing research in specific areas and making specific hypothesis they think are important.
What is co-production?
Now recognised that making assumptions, testing assumptions and publishing conclusions about a certain population without input from that population is not good practice.
People with neurodevelopmental conditions are often left out of the very research which is about them!
Often, research focusses on asking family members, educators and clinicians about the individual
A lot of these individuals could answer questions too! Term origins in HIV research which worked with HIV patients, 1980s. Very driven by the autistic community.
What is a problem with co-production?
Autistic advocates argue that conventional research provides too few opportunities for genuine engagement with autistic people, contributing to “social disenfranchisement” among autistic people.
Recent research demonstrates that world wide autistic people, their families, educators, and clinicians feel that autism research generally fails to describe the nature of autistic life experiences.
What is the definition of co-production?
No dictionary definition.
But it is the process of conducting research in partnership with the population you are focussing on.
Co-production < participants < involvement < consultation
What is meant by co-production?
equal collaboration between clinicians and autistic individual, involving joint decision-making on the goals, process and outcomes.
What is meant by participant ?
co-production
Autistic individuals take part in a defined activity such as by adding to an agenda or design of research.
What is meant by involvement?
co-production
opportunity for autistic adults to take an active role with more input on decision-making but agenda largely defined and led by clinicians.
What is meant by consultation?
co-production
Autistic individuals are asked for opinions, perspectives, ideas or concerns, but there is no formal involvement e.g. focus groups or questionnaires
Why co produce?
(Pellicano et al., 2020)
We might get more effective research if we actively involve community members who can direct attention to aspects of experience that are routinely missed without such input:
Effective in informing science/theory
Effective in applying to daily lives.
Clear ethical reasons for involvement in research. Marginalized communities are often not involved in making decisions that affect them.
The disability rights mantra, “nothing about us, without us,” people should be able to contribute to research that could in some way affect their lives (Friesen et al., 2021)
What is meant by expert by experience?
Thompson-Hodgetts (2022)
open letter as a non-autistic autism researcher
Research demonstrates positive effects:
Better insights, more involved, can have applied affects (instead of being disconnected)
Challenges our preconceptions
PTT important in light of research focussing on current real world event»_space; sadly although co-production is increasingly popular in autism research, this is not the case across all condition
How did lockdown affect neurodevelopmental conditions?
Lockdown was necessary, but not without long reaching implications
It saved lives, but also impacted people’s mental well-being
What do you think some of the impacts of lockdown could be for individuals with a neurodevelopmental condition?
change in routine, lack of support from social cirle, less accessibility, didn’t need to mask
How did COVID affect Down syndrome?
40Y+ Adults were 4x more likely to be hospitalized and 10x more likely to die from COVID-19 (Clift et al., 2020).
Adults with DS faced unique challenges from societal efforts to curb the spread of COVID-19.
Quarantining and social distancing likely led to reductions in disability programs that adults with DS normally rely on.
Adults with DS are often not able to benefit from telehealth or virtual services to the same extent as their non-DS peers (Krysta et al., 2021)
The pandemic may also have reduced activities important for mood & behavior regulation and overall health including exercise and time spent outdoors - these activities are often fostered by disability programs (Rubenstein et al., 2020)
What changes affect mental health?
Daily life changes caused by COVID as well as new stressors brought on by the pandemic may have consequences for modd and behaviour.
Sep 2020 - Feb 2021: caregiver of DS
1/3 of individuals were more irritable or easily angered
52% were more anxious
41% were more sad/depressed/unhappy relative to prepandemic
The majority of changes in mood and behavior were of modest severity.
What were the NICE guideline with COVID?
During the pandemic NICE published a scale setting out who to prioritise for care if resources ran short.
Those who need support for day-to-day living (e.g. people with learning disabilities) were not prioritised on this scale: Led to many people being issued a do-not-resuscitate (DNR).
Mencap contacted NICE who agreed the scale shouldn’t apply to people with learning disabilities & updated their guidance.
NHS England responded quickly, but still some people who have a DNR who don’t know!
Was Lockdown all negative?
COVID ADHD
Bobo et al. 2020
533 French parents of ADHD children & adolescents (m age=10.5, 58 girls). Questionnaire open-ended and closed questions (mixed methods)
Negatives
Social
General Behaviour
Sleep
Home schooling
What social quotes from te Bobo et al. 2020?
negative
“My son, a teenager, suffers from not being able to meet his friends”
“he lives at night with video games, sleep during the day”
What sleep quotes from te Bobo et al. 2020?
negative
“His sleep pattern is completely disrupted”
“he is more anxious, he sleeps badly…which goes inevitably goes with greater aggressiveness”
What home schooling quotes from te Bobo et al. 2020?
negative
“we are under too much pressure because of homework”
“He quickly gets angry and fears more than anything to do the work sent each day by the teacher (…) nervousness takes over and he throws away his pencil saying that he will never succeed”
What general behaviour quotes from te Bobo et al. 2020?
negative
“She is provocative and insolent every day. This is very tiring for all member of the family”
“rather badly, quite anxious, very oppositional, sometimes even violent towards em”
What are positive of lockdown?
ADHD - Bobo et al. 2020
Quantitative: 34.71% of parents report a worsening of their child’s behaviour, 34.33% report no noticeable changes and 30.96% note an overall improvement in their child’s behaviour
Reduction in inattention and agitation
Improvement in self-esteem
Reduction in anxiety
Better appreciation of their child’s difficulties
What better appreciation of their child’s difficulties quotes from te Bobo et al. 2020?
positive
“homeschooling allowed me to better appreciate the impact of his dysgraphia on his learning. How important his landmarks are for his mental and emotional balance…”
“I find our child immensely strong in combating his difficulties due to this pathology”
What reduction in anxiety quotes from te Bobo et al. 2020?
positive
“I find my son more peaceful, calm than usual…” “less school pressure, a more suitable pace”
What reduction in inattention and agitation quotes from te Bobo et al. 2020?
Positive
“he is alone with us, so his work is of better quality and more in-depth than in class (no distractions, regular breaks, etc.) “
“I feel that ADHD is less because there are no time/schedule or school constraints…”
