Lecture 6: Cultural Aspects of Clinical Neuropsychology
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There 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.
Health and Illness: positive concept of health and negative concepts of disease/ illness/ sickness are defined differently in different cultures!
Culture influences:
Culture can be thought of as a set of implicit and explicit guidelines/information that individuals acquire as members of a particular society or context, regarding, eg how to view the world/ how to experience emotions/ how to behave in relation to other people/ to supernatural forces or gods/ to the natural environment. It also provides a way of transmitting these guidelines to the next generation (enculturation).
Enculturation: a 'lens' through which the individual perceives and understands the world that he inhabits and learns how to live with it. The group or context itself.
Challenges to definitions/ challenges to define cultures:
Multiple levels of culture
(Cross-)cultural psychology
Cultural variation: differences between cultural groups. Cultures are fluid and dynamic, in most cases changing over time. But cultural ideas and norms don't necessarily emerge to address universal problems. Rathe result from cultural learning. Example: fashion, tertiary level.
Sources of cultural variation: ecological geographical differences are important and can lead to far-reaching consequences. Eg availability of food sources, ease of living in specific habitats, interdependence among groups, etc. Local ecologies influence cultural values and norms and can lead to cultural in different ways: proximal causes vs distal causes and evoked culture vs transmitted culture.
Proximal causes: influenced that have direct and immediate effects. - eg when Spanish conquistadors invading had good armour, allowing a quick victory over the Incans, who lacked such technology.
Distal causes: initial differences that lead to effects over long periods of time. - eg because of sufficient food, people could devote their time to nonfood activities such as creating tools.
Evoked culture: specific environmental conditions evoke specific responses from (all) people within that environment, becoming part of a culture. - eg acting in an intimidating manner when your children are being threatened.
Transmitted culture: cultural information passed on or learned via social transmission or modeling. - eg copying behaviour, clothing, aspects of etiquette, etc, from food-finding to social interaction.
Evoked and transmitted culture are not always clearly separated! Eg more emphasis on physical attractiveness due to greater parasite prevalence, vs parents teaching their children to pay attention to physical attractiveness. Transmitted culture is arguably always involved in maintaining cultural norms, even when evoked cultural responses are also present. Evoked culture based on ecological pressures alone cannot explain cultural variation. Transmitted culture represents situation-specific AND group-specific knowledge.
Transmission of cultural information, how is information transferred
Parallel with biological evolution, the main mechanisms are natural selection: increasing proportions of traits that confer a survival advantage; sexual selection: increasing proportion of traits that confer reproductive advantages. Sometimes conflicting!
Cultural evolution
Similarities with biological evolution: Ideas can be persistent (high survival rate) and ideas can be more prone to being passed around (reproduced more).
Differences: cultural ideas can be transmitted horizontally among peers, not only vertically across generations.
What makes ideas interesting and sticky?
Started with Darwin: Emotions and emotional expressions are universal; everyone has the same. Later there was discovered by Ekman & Friesen that there were six basic emotions: happiness, surprise, sadness, disgust, fear and anger.
How did they do the research: They asked different people, who have never met, how they would express certain sentences. These were checked with different societies.
Assessing universality: in particular, pride has been proposed to be universally recognized expression. Pride is different in that it involves much of the body, not just the face: erect posture, head tilted back, slight smile, arms extending away. Even people who are born blind, show this emotion.
What is an emotion: face, posture, subjective feeling, caused by the environment, combination of physiological reaction and cognitive,
Perspectives on emotions
Universality vs cultural variability
The JL theory predicts that emotions should be universal due to physiological similarities of all humans. If JL was right, then emotions would be universal, the same in every human being.
The Two-Factor theory predicts that emotions should vary across cultures because different cultural experiences may lead us to have different interpretations of physiological responses. If the Two-factor theory was right and it would depend on how you would interpret it, then not universal.
Do differences in emotional expressions affect emotional experiences, too?
Do people experience emotions the same? Is there a link with how emotions are expressed and how they are felt? If that is true, then you could either feel the emotion and express it and express the emotion and feel it. If the second thing is the case, then you could influence how you feel.
Facial feedback hypothesis provides one reason to expect cultural variability. The hypothesis proposes that we use our facial expression to infer our emotional state. This suggests that by making a particular emotional expression, we can think that we are experiencing the corresponding emotion. Pencil test: it suggests that our facial expressions can affect our emotional
.....read moreOverall key points
Commonalities and culture differences in:
Body and lifestyle are influenced by our culture
Note that: Influence of culture on health is very broad and complex. In these notes only some of the relevant topics will be discussed. The main aim is to raise awareness of differences, open mind to variety and views other than those that are so standard to you that you wouldn't even think about them. Differences between individuals from one culture can sometimes be larger than those between cultures.
What is universally attractive? Evolutionary psychologists suggest preferences for visual appearances have evolutionary roots. Communalities across culture in what is perceived as attractive: clear complexion, bilateral symmetry and average features. Signs that you are healthy. People are attracted to healthy mates.
Skin signals health more directly than any other visible aspect. The cosmetics industry provides people with ways to make their complexion look clearer. People have strong aversive reactions to skin conditions. Skin conditions often associated with stigmatization. Example: 2 Nigerian girls with skin disorder were hidden to protect the other children in the family, as marriage with member of family in which the skin disorder occurs is discouraged.
Bilateral symmetry is a marker of health. When an organism develops under ideal conditions its right and left sides will be symmetrical. Genetic mutations, pathogens or stressors in the womb can lead to asymmetrical development. On average, asymmetrical faces are views as less attractive.
Faces with average features are more attractive than faces that deviate from average. Average features are less likely to contain genetic abnormalities and are more symmetrical. We can more easily process any kind of stimulus that is closer to a prototype than one that is further from a prototype. And easy processing is associated with a pleasant feeling that gets interpreted as attractive.
"Average is attractive" does not apply to aspects beyond facial features. This is seen with people's weight, height, muscles, breasts and hips. For such aspects, it's often bodies that depart from average that are seen as more attractive. The kinds of body weights that are perceived to be most attractive vary considerably across cultures.
Body-weight
In 1951, anthropologist and psychologist concluded that heavier women were universally found to be more attractive.
.....read moreThere 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:
.....read moreNeuropsychology: 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
.....read moreThe epicentre: eastern/southern Afrika. 10% of the world population lives there. 75% of all people infected with HIV and 75% of newly infected people live there.
Anthropology: how individuals’ behaviour is shaped more by group norms and values, but they have been too focused on group norms. They studied only the cultures and took themselves as the norm and the other as needed of explanation. We still see this today. But, our own point of view needs explanation too. The individual perspective of a culture lacked, not everyone in a culture is the same. The lay people still see their own culture as the norm and that everyone within a culture thinks the same.
Cultural relativism: becoming aware that we are also trained to see the world a certain way. The opposite of ethnocentrism. Differences between groups of people are not biological but cultural (‘man-made’/ taught). Franz Boas: "civilization is not something absolute, but is relative, and our ideas and conceptions are true only so far as our civilization goes”. cultural relativism has consequences for data collection.
Data collection: it suggests that the data is out there, has a form/shape, regardless of who finds it. That's not true, data is not easy to find. A lot of the time people just ask what they want to know, but when asked sensitive questions (about HIV for example), people don't always answer honestly. Also, our concepts of things/situations aren't always the same. For example, marriage is very different in the West, then in Afrika.
Ethnographic research: a qualitative research method centred upon direct and sustained, naturalistic interaction with people in the context of their daily lives in an attempt to grasp the world from their perspective.
How to gain the trust of a culture: participate in the daily lives, activities. Trying to bond with the people. Bodily experiencing helps to understand the people.
Differences in world views: Gender
Malawi: you squat down when talking to someone older. Social hierarchy is much more related to age/seniority than gender. Gender not a universal social stratifier in that society. In Malawi, you have words for a younger and older sibling, instead of brother or sister.
Cultural differences in health
Everywhere people try to make sense of health problems and seek ways to prevent and cure these.
.....read moreARQ: organization helping people after traumas.
Who are refugees? Because conflict or persecution they have to flee their country. No longer in their own country, having to cross borders and it is not possible to go back home safely. Countries have a legal obligation to help refugees and are not allowed to send them back if it is not safe. When do you stop being a refugee: when they can go back? When they integrate in their new country?
2017: 14.716 new asylum application. Mostly from Syria (2.202) and Eritrea (1.095). 14.490 people reunited with their families in the Netherlands.
Syrians are the largest group of refugees in the Netherlands. 40% of male and 45% of female recognised refugees have psychological complaints (anxiety, depression, PTSD).
The refugee (mental) burden:
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