What is serious illness is and what the role of communication in serious illness is
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).
Cultural differences in serious illness perceptions
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.
Cultural differences in 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
- A subset of patients does not want to be informed, mainly elderly
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.
- A subset of patients is indeed not informed
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 manner of being informed is important
The Dutch directness of information-provision is disliked
Relatives’ attitudes
- Family plays an important role in (not) informing patients
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
- Clinicians not always inclined to inform patients, depends on several factors
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
- Dutch clinicians find it difficult to meet communication needs
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:
- "if a physician says 'Madam, in your situation, with your cancer cells and metastases we know that…'. It would be useless to hear that I will die between 1 and 10 years from now. That's not concrete enough, so they'd better say nothing then. If they say 'It's 3 years, give or take a year or two' … Yes, that is what I want to know."
- "If he says, 'there is nothing we can do', then I understand the message. You know, you know... Whether it will be 3 months, that matters of course, but he doesn't have to tell me that."
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.
Cultural differences in patient's need to feel known
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:
- Immediate: Empathic responding to patient cues increases satisfaction, quality ratings
- Short term: perceived empathy in bad news consultations increases satisfaction.
- Long term: reassurance and discussion of patients' feelings during a cancer diagnosis consultation, decreases anxiety up till 1 year.
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
- Stress-coping model of communication helps explain communication needs in serious illness.
- Serious illness attributes influence by culture
- Patients' have a need to know and need to feel known (cross-culture)
- There are legal issues around the patients' need to know. Cultural differences in information needs and norms (family-centeredness), need to tailor explicitness (prognostic) information.
- Verbal and non-verbal empathy can influence patient outcomes universally
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.
Cross-Cultural Psychology of Health and Illness (18/19)
Lecture 1: Introduction, Methods and Development
Health and Illness: positive concept of health and negative concepts of disease/ illness/ sickness are defined differently in different cultures!
Culture influences:
- What constitutes health or illness? - culture-specific illnesses
- What causes health or illness? - some cultures take personalistic views, while Western medicine is generally mechanistic
- What should be done for health or against illness. - habits in terms of seeking health care; acceptable health care practices
Culture: what is it?
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:
- Cultural boundaries are not distinct, often unclear
- Cultures are dynamic and change over time
- There are as many variations within cultures as between cultures
- Problem with stereotypes: person-related variables are generally continuous and distributed
- Artificial or false dichotomies should be avoided
Multiple levels of culture
- Tertiary level: explicit manifest culture, visible to the outsider, such as social rituals, traditional dress, national cuisine, festive occasions = 'facade of a culture'
- Secondary level: underlying shared beliefs and rules, known to the insiders but rarely shared with outsiders = 'social norms'
- Primary or deepest level: rules that are known to all, obeyed by all, but implicit, and generally out of awareness (hidden, stable and resistant to change) = 'roots'
(Cross-)cultural psychology
- Absolutist approach: psychological phenomena are the same across cultures, processes and behaviours vary
- Relativist approach: psychological phenomena only exist within the context of a culture
- Somewhere in between: psychological processes are shaped by experience, but all humans share the same biological constraints!
- General psychology focuses on universals and (sometimes) tries to control for cultural variation
- Cultural psychology focuses on cultural variation in terms of the psychological consequences of culture
- Studies the different meaning systems originating from different environments
- Assumes that
Lecture 2: Cultural transmission, Cross-cultural cognition
Cultural evolution
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
- ideas need to be retained
- ideas need to be passed on
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?
.....read more
Lecture 3: Emotions, Motivation and Acculturation Stress
Emotions
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
- James-Lange Theory of Emotion: there is some kind of stimulus--> physical reaction from your body, cannot prevent it from happening --> emotion
- Stimulus/situation --> response --> subjective feeling
- This theory states that if there is no physiological response, there is no emotion.
- Two-Factor Theory of Emotions: Response can also be because of something else. Two different situations can lead to the same response. The interpretation makes it the emotion. Emotions are interpretations of our physiological responses. How do you attribute it? (Zie bb voor model)
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:
.....read more
Lecture 4: Culture and Body-Image, Life-Style and Health
Overall key points
Commonalities and culture differences in:
- Body-image - what is perceived as attractive
- Biology - weight, length and age
- Life-style and health behaviour
- Health and medicine - views on health and illness and use of health care.
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.
Culture and Body-Image
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
.....read more
Lecture 5: Intercultural communication in serious illness
What is serious illness is and what the role of communication in serious illness is
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).
Cultural differences in serious illness perceptions
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
.....read more
Lecture 6: Cultural Aspects of Clinical Neuropsychology
Culture and Clinical Neuropsychology: Theory
How can culture affect neuropsychological function?
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:
- How can the same physiological characteristics lead to different outcomes depending on one's culture?
- How can the same culture lead to different outcomes depending on one's physiological characteristics?
The relation between biology and behaviours may depend on the cultural meaningsof behaviours, rather than on the actual behaviours.
How does culture influence neuropsychological assessment?
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
.....read more
Lecture 7: Case study: Understanding HIV risk in the aids Pandemic's Epicentre
The 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.
Differences between psychology and anthropology
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.
- The cultural difference within nations and cultural similarity across nations.
- People think that the way they learned it, is the way it should be/ it ought to be.
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.
Cross-cultural research (speciality of anthropologists)
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.
- Etic/outsiders’ perspective: e.g. In ‘experience-distant’, biomedical concepts
- Emic/insiders’ perspective: ‘experience-near’, locally meaningful concepts and classifications
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
.....read more
Lecture 8: Problems and treatment of traumatized refugees in Western countries
ARQ: 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.
Problems
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:
- War, organized crime, persecution
- Leaving everything behind
- Fleeing
- Asylum procedure: very stressful
- Integration
- Loss of status: for example, when you were a doctor in your home country and have to be a cleaner in the new country.
- Takes a long time to be reunited with your family
- Conflict in the home country is ongoing, they keep checking the news, very stressful.
Posttraumatic stress disorder
- Exposure to actual or threatened death, serious injury, or sexual violence
- Intrusion symptoms(need 1 for diagnosis)
- Intrusive memories: the memory keeps the same vividness.
- Destressing dreams
- Dissociative reactions
- Cued psychological distress
- Cued physiological reactions
- Avoidance symptoms(need 1 for diagnosis)
- Avoidance of memories, thoughts, feeling
- Avoidance of external reminders
- Cognitions and mood symptoms(need 2 for diagnosis)
- Inability to recall important aspect of event
- Exaggerated negative beliefs or expectations
- Distorted cognitions leading to blame
- Persistent negative emotional state
- Diminished interest or participation in activities
- Detachment or estrangement from others
- Persistent inability to experience positive emotions
- Arousal and reactivity symptoms(need 2 for diagnosis)
- Irritable behaviour and angry outburst
- Reckless or self-destructive behaviour
- Hypervigilance (extremely alert)
- Exaggerated startle response
- Problems with concentration
- Sleep disturbance
- Dissociative symptoms
- Depersonalization
- Derealization
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