Neuropsychology: study of the relationship between behaviour, emotion and cognition on one hand, and brain function on the other.
Clinical neuropsychology(NP): assessing and cognitive, emotional and behavioural function after suspecting brain damage for diagnosis and potential treatment.
Brain damage after trauma, vascular accidents, tumours, toxicity, infections, also (neurodegenerative) diseases, or just ageing.
NP assessment: 'imperfect index of brain function'
Physical differences: brain - Brain plasticity can be affected by: specialized skill acquisition, enrichment, deprivation, education, health, stress, correlates of differing cognitive mechanisms, experience more generally.
Cultural neuroscience: field with focus on factors that affect biologicals and psychological processes that reciprocally shape beliefs and norms shared by groups of individuals.
Physical differences: genetics - Core of nature/nurture interactions!
Heredity: passing on characteristics from parents to children based on genetic material. Although about 99% of genes are fixed, 1% differs across individuals. Genes can have effects that depend on external variables.
Epigenetics: environmental factors cause genes to switch on or off without modification of the DNA sequence. Chemical tags can control genes in specific cells. Epigenetic tags can result from lifestyle choices or specific experience. Some epigenetic tags are hereditary! Part of our genetics that only become available in certain circumstances.
Physiological approach is relatively new! Questions:
The relation between biology and behaviours may depend on the cultural meaningsof behaviours, rather than on the actual behaviours.
Measuring brain function: NP assessment: intelligence; memory; verbal abilities; executive functions; visuo-spatial functions; attention; syndrome-related combinations; general batteries. The scores will be compared to normative data, sometimes with correlations for age or education level.
Culture and NP assessment: Normative data based on very limited subsample WEIRD patients: which is partial and biased.
There are several thousands of cultures, and over 6800 language spoken! Relative differences may vary. Biggest commonality is driven by schooling, science and technology (useful information spreads fast!)
Why would culture affect NP assessment?
Values and meaning: no general agreement on merit responses (what is the right response): eg in the Raven's, do you go for aesthetics or for rules? Attitudes, eg are animals pets or food.
Modes of knowing: individual task vs collective endeavour: why would it matter what I know when I'm part of a collective?
Conventions of communication: interaction: one-way questions, authority; and the type of questions (both in content and way of asking).
Patterns of abilities: Culture prescribes what should be learned, at what age, and by which gender. Results in culture-specific clusters of skills or abilities that 'belong' with a stage of life or role. Tests need to be appropriate for subject's learning opportunities and contextual experiences.
Cultural values: culture dictates what is or is not situationally relevant and significant, or even appropriate. Based on values that are not necessarily shared!
Familiarity
Testing situation: being tested is part of school culture!
Attitudes that facilitate good performance: motivation, purpose
Elements used in testing: eg objects, situations, stories: animals, foods, plants, natural phenomena.
Strategies needed to solve task: eg spelling is an artificial task in language with a phonological writing system; eg cardinal direction (north, south, east, west) not used in all cultures.
Language: Linguistic relativity: Whorfian hypothesis: language influences thought. Language use and the meaning differs with a cultural and subcultural background. Correlates strongly with education level, testing language often formal. Important to make test instructions understandable and appropriate!
Education: Accounts for up to 50% of variance in IQ tests, 0.6-38% in NP tests! Double role: increases knowledge of test content; increases familiarity with testing setting and strategies. Schooling increases test performance, smaller increases with each year of schooling.
Illiteracy: not being able to read or write
Functional illiteracy: reading and writing is inadequate "to manage daily living and employment tasks that require reading skills beyond a basic level".
Literacy is generally higher in men than in women. 2/3 of illiterates are women. In Europe, North-America and Australia, literacy is closely tied to poverty: functional illiteracy can be high in specific groups!
Research in other countries: US, Canada, Mexico, Bermuda, Italy, Norway, and Switzerland. Investigated function: document literacy, prose literacy, numeracy and problem solving. All countries have significant numbers of people with low skills: between 1/3 and 2/3 do not attain minimum level demanded by increasingly complex knowledge economy. Especially the US and Italy show a large range in skills. Lower document literacy and numeracy also associated with poorer health. Interpreted as causing difficulties to navigate the health care system. Proportionally similar health rating between countries.
Learning to read reinforces certain cognitive abilities, such as verbal memory, phonological awareness, and visuospatial discrimination. Illiterate individual show lower scores on: naming tasks, verbal fluency, verbal memory, visuo-perceptual abilities, conceptual functions and numerical abilities.
Illiteracy: More difficulty copying nonsense figures or words. Concrete, real-life situations much easier to process! True for all kinds of tasks: naming, memory, visuospatial, etc. Standard test materials put illiterates at a disadvantage!
Minorities within a culture: different ethnic groups in one country; after migration (especially first-generation); groups with no country. In NP assessment, testing is approached from a majority culture perspective!
Six potentially distinguishing variables:
Necessity for specific tests and norms - Indication of functional level depends on relative scores. But: not clear hoe specific this needs to be: for each language? Cultural region? Educational level? SES level? Depends on cognitive function in question! Understanding the underlying variables is at least as important as having assess to specific norms.
Potential psychological consequences of being a member of a minority group:
Acculturation | Strong identification with host culture | Weak identification with host culture |
Strong identification with heritage culture | Integration/alternation Positive attitudes toward host and heritage culture; participate in host culture while maintaining traditions of heritage culture; most successful strategy - least prejudice and greatest social support. | Separation
|
Weak identification with heritage culture | Assimilation
| Marginalization Negative attitudes toward host and heritage culture; no effort to engage with host and heritage cultures; rare and lest successful strategy; may characterize third culture kids |
Discrimination and othering - Stereotypes and prejudice can lead to discrimination, which can be a large problem in contexts where there is intercultural interaction. Discrimination can affect the acculturation process in two ways:
Discrimination has a range of negative effects on (mental) health, including High blood pressure; Heart problems; Low birth weight; Depression; Somatization; Risky behaviours such as smoking and alcohol use.
Discrimination is very hard to study. It can be very subtle (othering). Incidents may not always be remembered or interpreted as discrimination. Effects may be moderated by coping and social support. Still an active research field, but many studies now point in this same direction of discrimination as a health risk.
Summary part 1 - Neuropsychological assessment aims to provide an index of brain function. Physical differences may emerge based on hereditary and experiential factors. Culture can affect NP assessment in multiple ways: Patterns of abilities, cultural values, familiarity, language, education. Illiteracy affects the development of cognitive abilities. Being a member of a minority group can affect various aspects of well-being: Discrimination and other affect mental and physical health.
Neuropsychological practice in a multi-cultural society Social aspects and care needs
MCI and dementia: how to diagnose? What are the obstacles?
Prevalence in different cultural groups Solutions: culture-fair screenings
Aging - Cognitive functions decline with age. Not all! Memory and executive functions deteriorate more than vocabulary and world knowledge. Risk of mild cognitive impairment (MCI) and dementia increases with age.
MCI - Mild cognitive impairment: Cognitive changes that are serious enough to be noticed, but not severe enough to interfere with daily life or independent function. Most common subtype of MCI first presents as memory impairment. Progression to dementia in 10 to 15% of afflicted persons per year. MCI as a precursor for dementia.
Dementia: Umbrella term for symptoms caused by neural disorders, especially cognitive symptoms. Most common causes of dementia:
Each have own most prominent symptoms, all interfere with everyday activities. Data come from Western sample!
How do we screen for dementia? - MMSE: Mini-Mental Screening Exam (Maximum score=30, dementia is indicated for scores below 24) --> screening, not diagnosing! Kinds of items: orientation to time and place; naming; registration (responding to prompts); attention and calculation; recall; repetition; complex command (figure).
DSM 5 name for dementia: Major neurocognitive disorder
Prevalence - MCI prevalence = 3.0 - 19.0%, with a risk of developing dementia of 11-33% within 2 years. Dementia prevalence = 5.4 - 6.4% (≥60 years). Not the same everywhere! Related to wealth! Higher prevalence MCI and dementia described for immigrant populations in USA and UK
More dementia in poorer countries: the predictions are that the proportion of people with dementia will increase under low- and middle-income countries.
Migrant groups in the Netherlands - In the Netherlands, 11.1% of the population in 2010 consisted of migrants (8.5% from outside the EU). Turkish, Moroccan and Surinamese people make up 65% of all non-western immigrants in NL (i.e. born abroad to foreign parents). First-generation non-western immigrants are aging: 4% of population in 2013, to 15% in 2039. Native Dutch older group grows a bit less fast: 18% to 28%. Older immigrants in the US show a higher prevalence of risk factors for dementia. Diabetes, cardiovascular disease, obesity, smoking, hypertension, high cholesterol, low SES.
Care experts - Among European dementia experts, 64% find it more challenging to assess dementia in patients from ethnic minorities. Reported problems include: Language proficiency (88%); Presentation of symptoms (84%); Educational level (84%); Lacking assessment tools (68%); Lacking cultural knowledge (44-56%).
Over- and underdiagnoses - Accurate diagnosis: High sensitivity(good true detection) and high specificity(low false detection).
Findings from Denmark: Belief: dementia is underdiagnosed in migrant groups; Finding: in general health care, immigrant groups show different rates of diagnosis than native Danish. Turkish, Pakistani and Ex-Yugoslavian groups (no difference!). Finding: Age effect: overdiagnosis for younger people (<60y) and underdiagnoses for older people. Belief supported, but only for the older group!
Reasons for over and underdiagnoses?
Differences in help-seeking behaviour
Difficulty with the health care system
Assessment and diagnosis
Culture-fair diagnosis - From the first week: culture-fair testing! From the previous part: need to account for cultural values, familiarity, language, different education levels, interpretation of norms, etc
Daily practice in a memory clinic:
Cross-cultural dementia screening (CCD): Developed in Amsterdam, Validated in 2009, norm data from 2013. Instructions in own language; Culture-free/fair items; Nonverbal as much as possible. Domains: Memory, mental speed, executive function
CCD tasks:
Memory: Objects test: remember objects among distractors
Mental speed and divided attention: Dots test: connect objects in order of increasing numbers
Mental speed and inhibition: Sun-moon test: cross-name pictures in own language
Interpreters - CCD developed in 6 languages: Dutch, Turkish, Moroccan- Arabic, Moroccan-Tarifit, Sranantongo, Sarnámi-Hindustani. Interpreters that are not family are preferred. Shameful for patient, covering up by interpreter. Native testers are ideal! Interpreters no longer covered by Dutch insurance since 2012.
CCD evaluation- Total battery:
(MMSE: sensitivity=76%, specificity=.83)
All subtests showed good individual sensitivity and specificity. Strongest predictors of dementia: Objects test B (delayed) and Sun-Moon test B (Interference).
Dementia research in migrant groups - Evidence on dementia prevalence is rare in many regions
Symbol study - Aim: to assess the prevalence of MCI and dementia in community-dwelling migrants ≥ 55yrs, and to map their and their caregivers’ health care use and care needs. Hypothesis: prevalence MCI and dementia for older immigrants =2x prevalence in native Dutch. Large sample of older community-dwelling immigrants was screened with ‘Cross-Cultural Dementia screening instrument’ (CCD) to overcome barriers of culture
Ran from 2010-2013. Participants: Adults from Turkey, Morocco, Surinam or NL over 55, recruited through GP in low SES suburbs -> cross-sectional!
Measures:
Results - Conclusion: MCI and dementia were three to four times more prevalent in the majority of non-western immigrant groups when compared to the native Dutch population. These differences are important for planning and improving healthcare facilities!
Implications - Need for specific care: adjustments in health care institutions. Broad use of culture-fair diagnostic tools: more focus necessary on the reliability of existing tools. Adjustments in care homes: food, activities, languages. Increasing awareness among migrant groups: dementia is stigmatized, affected people do not seek help. With a growing group of elderly migrants, this issue will become increasingly important.
Summary part 2 - With an aging population, there is a growing group of migrants who need neuropsychological care. Some migrant groups show higher indices of predictors of dementia (cf. physical health, education). Dementia can be underdiagnosed but also overdiagnosed. Culture-fair diagnostic tools are needed to provide fitting care. CCD is an instrument developed to have culture-free items, many nonverbal responses. Prevalence of dementia indeed shown to be higher in migrant groups using appropriate diagnostic tools.
Take home points - Clinical neuropsychological assessment is affected by culture in various ways, that each have different solutions! Theoretical considerations include: Neural and cognitive effects of experience (education, SES) and cultural factors that affect specific test outcomes. Clinical considerations should include:
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Cross-Cultural Psychology of Health and Illness (18/19)
Notes of the lectures for Cross-Cultural Psychology of Health and Illness (CCPHI) 2018/2019. If you want a word document of the notes, leave a comment and I can send them to you! :)
Lecture 5: Intercultural communication in serious illnessThere is no direct explanation but, a serious illness can be explained as a condition that carries a high risk of mortality, negatively impact the quality of life and daily function, and/or is burdensome in symptoms, treatments or caregivers stress.
Examples of serious illnesses: cancer, dementia, heart failure, diabetes, lung diseases.
Importance of communication: The moment patients are diagnosed, they need good communication: what is going on, what are their options, feel they are seen, someone is caring for them (patient and family).
Patient: Priority: complaints; Outcomes: satisfaction, bereavement outcomes, how they're loved ones feel after they died.
Healthcare professionals: Intrinsic motivation: we all have intrinsic motivation for good communication. But it is difficult, especially breaking the bad news. Poor communication is related to burnout.
Communication errors are related with culture.
In the Netherlands there is a lot of focus on what the patient wants, the family comes second. Autonomy: discuss everything with the patient first, and then maybe the relatives. Don't speak about the patient without his/her permission. Tell everything clearly and honestly. The patient decides, not the family. A lot of cultures are more family-centred.
The stress-coping model of communication
It really about the 'need to know' (cognitive information) and the 'need to feel known' (affective empathy).
Illness attributions: When facing serious illness, patients attribute these illnesses to several causes. Where you attribute the illness to, is dependent of the culture.
Study among White British vs Black Caribbean MS patients in London. Two illness attributes: genetic/medical/environment vs supernatural. How people attribute their illness, could also change the information you have to give.
The role of religion: religion can play a large role in illness perceptions. Islam: disease can be a divine test and only Allah knows and need to continue aggressive treatment. Christianity: only God knows.
Knowing about these attributes/motivations is important to decide what patients need to know.
Legal aspects
WGBO (law): in NL doctors have the duty to inform patient as clearly as possible, if necessary, by using an interpreter. But also, the patient has the right to not know. Professional secrecy: is a patient's right: the patient decides with whom medical information can be shared.
Case study: Would you tell a 75 years old patient with cancer his life expectancy? Sweden: almost 100% would tell the patient. The Netherlands almost 90%. Belgium around 70% and Italy around 50%.
Patients need for information
Patients need for information to satisfy their 'need to know'. However, need differ between patients and change over time. It is really about tailoring.
Study Moroccan/Turkish attitudes about informing about diagnosis/prognosis. Systematic review by Graaff et al., 2012 looked at communication experiences/perceptions of Turkish and Moroccan patients with serious illness. These are the biggest groups in the NL
Patients’ attitudes
Turkish patients: 15-33% do not want to be informed about diagnosis/prognosis. Elderly patients do not want to be informed. Younger patients want to be informed but would not inform relatives.
16-63% of Turkish patients were uninformed. 33% of Moroccan patients were uninformed. Also, in the NL, not all Turkish/Moroccan patients are informed
The Dutch directness of information-provision is disliked
Relatives’ attitudes
Numbers: 39-66% of Turkish relatives did not want patients to be informed of a bad diagnosis/prognosis. 89% of Moroccan relatives informed (compared to 33% of patients)
Reasons preference uninformed: upsetting nature, believing patients do not want to know, might hasten death, might stir gossip
Clinicians’ attitudes
Majority of Turkish oncologists (67-93%) thought that patients should be informed, many informed relatives (8-30%). Turkish physicians are more inclined to inform patients with higher SES/educational level. Trained and experienced clinicians more inclined to inform patients
Due to e.g. patients’ lack of knowledge & cultural patterns
Conclusion attitudes: A subset of patients does not want to be informed (eg elderly) and are indeed not informed. Family can act as gatekeeper, due to several reasons (believing patients don't want to know). Clinicians not always inclined to inform (esp untrained/younger). Dutch clinicians struggle with how to inform.
Family gatekeeping: sometimes the family determines what the patients’ needs to know, for example when the family needs to translate for the patient, they can decide which information they tell the patient. It falls under the rights of the patient to not know.
To summarize so far: stress-coping model of communications helps explain communication needs in serious illness. Serious illness attributes influenced by culture. Patients have a need to know, which give legal difficulty: right tot (not) know and cultural norms influence communication.
Explicit vs general prognostic information
Patients' attitude: Most patients want to know everything, but 20-40% prefers to remain - partly - ignorant about their prognosis.
Physicians' attitude: Reluctant to discuss time-frames. Often implicit discussion about prognosis and death, not often explicit wording used.
Preference explicit information: there is a lot of om ambiguity around what people want to know. Examples:
Video-experiment of valid role-played videos in which explicitness of prognostic information was manipulated. Breast cancer patients/survivors (n=51) and healthy women (n=53) participating, of which n=17 ethnic minority. Put themselves in shoes of video-patient and judged communication. --> More explicit information was more preferred; it doesn't mean that all the patients prefer it.
Explicit prognostic disclosure in Asia non-disclosure and family-centred communication is typical in Asia. Little is known about effect explicit prognostic information in Japanese women. The same kind of results were found. Explicit information gives more satisfaction and takes away some anxiety.
Clinical applications: Keep culture into consideration: ask patients and family about preferences. Be careful with prognosis, any objections with nearly all faiths (you can't take hope away, miracles can happen, a doctor doesn't know it all either). Hope for the best, prepare for the worst.
Language barrier: the importance of a professional interpreter
Informal interpreter: often family member or friend, doesn't translate everything (shame). Is unable to translate medical words to own language.
Formal interpreter: is independent, professional secrecy, can translate everything (except body language), by telephone or live.
Language problems can impede joint decision making.
What is empathy: feeling with people; I know what it is like, a connection can make something better. Never: "at least you had a son" (when the son died) or trying to put a silver lining around it.
What is important in a clinician:
Empathy can provide hope. Reassurance about non-abandonment specific form of hope.
The broader effect of empathy
Patients' memory is poor: 40-80% of the information is forgotten. Can affective communication recall? Suggested pathway: via decreasing physiological arousal. People remembered more in the affective condition.
Non-verbal empathy
Importance and role of non-verbal communication might depend on culture. Non-verbal empathy might be more important in Eastern than Western cultures: more eye contact, less physical distance, clinician body oriented to patients, more smiling. Be aware, not all cultures appreciate eye-contact.
Better effects in the 'high' conditions (more eye contact, more smiling).
Patients' need to trust clinicians. Indications that immigrant patients have lower levels of trust. Is trust for immigrant patients more dependent on eye-contact, posture and smiling? Research found nothing.
Japanese replication study: higher levels of eye-contact led to a higher rating of trust and compassion. Non-verbal communication was more appreciated.
Clinical applications: empathy is important for patients. Verbal empathy (eg reassurance) can decrease stress, increase satisfaction and recall. Importance nonverbal empathy might depend on culture, but eye-contact, body posture and smiling seem to benefit most patients.
Summary
To conclude: Cultural attitudes/norms/needs need to be taken into account when communicating. But the need to know and feel known is universal. Ask patients and families about preferences.
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