1
Table of Content
Module 1: .................................................................................................................................................... 2
1.Qualitative Research for Understanding Illness Experience ...................................................................................2
2.Finding research literature and understanding illness/lived experience ................................................................2
3.Some important concepts from illness/lived experience literature - Biographical disruption/loss of self/narrative
reconstruction/invisible diseases/stigma ................................................................................................................3
"Lay Experiences of health and illness: past research and future agendas" - Lawton ...................................................................... 3
Concept of stigma .............................................................................................................................................................................. 5
Experiences of Stigma and Discrimination among Adults Living with HIV in a Low HIV-Prevalence Context: A qualitative
Analysis. AIDs Patient Care and STDs................................................................................................................................................. 5
'I Just want permission to be ill': Towards a sociology of medically unexplained symptoms. (Nettleton) ....................................... 7
The Body Projects of University Students with Type 1 Diabetes (Balfe) ........................................................................................... 9
Module 2 ................................................................................................................................................... 11
1.Communication Micro-skills .............................................................................................................................. 11
Therapeutic Communication micro-skills (video) ............................................................................................................................12
Dadirri ..............................................................................................................................................................................................14
Nurse-Patient communication: An exploration of patients' experiences (McCabe).......................................................................14
1.Emotional Intelligence.......................................................................................................................................16
Nurses' resilience and the emotional labor of nursing work: An integrative review of empirical literature .................................17
2.Communication Challenges - communicating with people with dementia and with patients in ICU ..................... 18
Implementing Person-Centered Care in Residential Dementia Care ..............................................................................................18
A qualitative study into the lived experience of post-CABG patients during mechanical ventilator weaning ...............................20
3.Conceptualizing Nurse-patient relationships ......................................................................................................21
Mirror, Mirror on the Wall, 2014 Update: How the U.S. Health Care System Compares Internationally ......................................22
A theoretical framework for person-centered nursing. In McCormack, B. & Mc Cance, T., Person-Centered Nursing: Theory and
Practice.............................................................................................................................................................................................22
Conceptualizing the nurse-patient relationship. (Hagerty & Patusky) ............................................................................................24
4.Dealing with so called "difficult" patients ..........................................................................................................27
Challenging interpersonal encounters with patients. In Stein-Parbury, J., Patient and person: Interpersonal skills in nursing
(Stein-Parbury) .................................................................................................................................................................................27
Management of 'surplus suffering' in relapsing remitting multiple sclerosis to improve patient quality of life (Burke) ...............29
Nurses' experiences of cancer (Corner) ...........................................................................................................................................31
, 2
Module 1:
1.Qualitative Research for Understanding Illness Experience
Illness experience: term to describe the experiences of people with a physical illness
Lived experience: term to describe experience of people who are struggling with mental health issues
Modern Medicine Criticized - Objectify and Dehumanize Patients (Med and Bower)
• In medicine = patient's experience of illness = report of potential existence of disease
• Major Issues:
o Not all cases of illnesses/mental distress can be assigned the same conventional diagnosis
o Patients bring range of difficulties to consultation with health professionals OTHER THAN actual
physical symptoms or mental distress e.g. difficulty managing medications, suffering related to
disease/disability, desire for information and autonomy in decision making, family, cultural or social
issues that impact on health outcomes
o Same diagnosis of illness/distress does not mean same experience
• E.g. leg fracture may not be distressing for an office worker but it may end a career of an
athlete
o Treatments that are the 'same' may have different impacts
• E.g. impact of surgery - loss of a limb (below the knee amputation) is a very different
experience compared to a mastectomy for a woman with breast cancer
Patient more than the 'possessor of the body of disease' (Lawton) - care more important than delivery
of medical treatments
• To provide effective care = need to better understand patients actual experience + related needs -
RESEARCH ON ILLNESS/LIVED EXPERIENCE = QUALITATIVE
• Illness/lived experience literature explore common themes that occur for people who suffer a particular
illness/lived experience of mental distress
• Understanding common issues - help to connect with patients + build trust + help understand how to best
manage care
o E.g. if we understand that young people with diabetes are embarrassed about injecting insulin inn
public - we might consider other options for care
Person/Patient Centered Care (PCC)
• PCC: ideology of care and a process that privileges the patient's experience and narrative over a
clinician-centered or disease centered focus
• Connecting with the person and their family/carers
• Humanizes care - focus on person's physical, social and personal history + biography of illness and care
• Emphasize right of person to choose + to be active in their own care
• Support individual's rights, values and beliefs
• Correlated with:
o Better recovery from illness/pain
o Better emotional health 2 months later, and fewer diagnostic tests and referrals
o Person-focused approach meant that suicidal men were more likely to return to health services and
less likely to attempt suicide
2.Finding research literature and understanding illness/lived experience
Using keywords and subject headings?
• Keywords: terms that describe a topic, subject, or concept
o May be single word or phrase
o Most databases can be searched with keywords
o Will find exact terms in article field record (not whole article) e.g. title or abstract
o Not all articles may be relevant
o Important to include synonyms or alternate terms in keyword search
• E.g. cancer screening - can also use mammogram, cancer test
o When to use:
• when no subject heading available
• exploring emerging areas = large number of results (some will be irrelevant)
, 3
• Subject Headings: words or phrases assigned to articles as they are added to the database
o Describe contents of the article - make them easier to find
o Medline, Pubmed, Embase
o Check definition of subject heading using 'scope' button
o Arranged in hierarchy
o When to use:
• scoping out a topic
• have little time to search
• include as many synonyms as possible (includes international spelling variations) = fewer but
more relevant results
• Useful to use combination of keywords and subject headings when conducting comprehensive search
(particularly true for systematic reviews)
Search Smarter: creating searching strategies
• OR: used to group similar terms
• AND: used to connect words together to create search stream
• Use brackets to group similar words together
Searching health databases
• Two types of databases: Subject Heading and Keywords
• Three main differences between databases:
o Subject headings
o Search history
o Limits
• Can limit your search by age groups, publication type or clinical queries
Finding Qualitative Literature
• Three ways to limit search to qualitative:
o Filters
• Clinical queries: high sensitivity (broadest), high specificity (most targeted), best balance
(best balance between sensitivity and specificity)
o Subject headings
o Keywords
3.Some important concepts from illness/lived experience literature - Biographical disruption/loss of
self/narrative reconstruction/invisible diseases/stigma
"Lay Experiences of health and illness: past research and future agendas" - Lawton
Modern medicine objectifies + dehumanizes patients (Wallace Bologh)
• Alienating self from body
• Patient = possessor of the body or illness
• Professional dominance of medical system - physicians possess + monopolize medical knowledge =
alienates patients from decision-making
• Medical system alone that is responsible for the ways in which patients experience self and body during
illness
Wide Range Issues Experienced for Individuals with Disease/Disability - Qualitative Data (in-depth
interviews + rich and textured description)
• Stigmatization (real and anticipated)
• Uncertainty and fear
• Strategies employed to avoid and neutralize these phenomena
• Discrimination + isolation within/outside workplace
• Adjusting to + living with different types of medical technologies
, 4
Bury's chronic illness as biographical disruption - takes place on many different levels
• Experience of chronic illness can lead to a fundamental rethinking of a person's biography and self-
concept
• Chronic illness involves a recognition of the worlds of pain and suffering, possibly even death (normally
only seen as distant possibilities or unfortunate)
• Unanticipated diseases = shatter hope + plans for future
o Disrupt relationships + material and practical affairs
o Biographical shift from perceived normal trajectory to one fundamentally abnormal and inwardly
damaging
o E.g. arthritis = growing physical dependency on others
• One's ability to mobilize physical and other resources may be crucial to the ways in which illness is
experienced
Charmaz's loss of self
• Loss of self = former self-images crumbling away without a simultaneous development of equally valued
new ones
o Patients with restricted lives, experienced social isolated (discredited by self + others), experience
humiliation of being a burden
• Move away from view of suffering = physical discomfort
o Draws attention to complex and overlapping ways of how illness experience may reinforce and
amplify one another
o E.g. stigma with chronic disease prompt people to experience low self-esteem + withdraw from
social activities (quit work, limit social engagements) = absence of opportunities for self-validation
• Restricted life = exacerbates feelings of loss of self
William's narrative reconstruction
• Conceptual strategies people employ to create sense of coherence, stability and order in aftermath of
biographically disruptive event of illness onset
• Able to explore longer-term effects of chronic disease on self-concepts
• Highlights ways in which narrative reconstruction can be used to reconstitute + repair ruptures between
body, self and world by linking and interpreting different aspects of biography in order to realign present
and past and self and society
o Participants chose to home in on particular models
o People's accounts of causation are not simply concerned with beliefs about disease etiology BUT
constitute an imaginative attempt to find a legitimate and meaningful place for the chronic illness in
their lives
Age, timing and biographies: rethinking 'biographical disruption'
• Importance of age and stage in life course of when a person becomes unwell = central theme for
concept of biographical disruption
• E.g. stereotype of certain diseases being applicable for certain age groups - RA disease of older people
o OA being normal and inevitable in later life - older people view symptoms of OA as being normal
and integral part of biographies (biologically anticipated event)
• Age and accumulated life experiences of their information appeared to mediate perception + response to
illness
o E.g. working class people elderly "hard earned lives" (familiar with worlds of pain, suffering, death -
background exposure to WW2) = although stroke have considerable impact of life (affect how they
walk, talk, wash) it was perceived as a "normal crisis" + not really biographically disruptive
• Already experienced multi-morbidities prior to stroke - already have restricted lives
• E.g. men who infected with HIV through gay sex view it as biographically disruptive BUT men
infect with HIV through hemophilia treatment view it as form of biographical reinforcement
Being infected led them to reinforce measures of the sort already taken = no disruption
• Important to look at person's whole biography when contracted with particular disease
• Bury concept scrutiny - implies that bodies and selves are always taken for granted before onset of
disease this can be disrupted
Table of Content
Module 1: .................................................................................................................................................... 2
1.Qualitative Research for Understanding Illness Experience ...................................................................................2
2.Finding research literature and understanding illness/lived experience ................................................................2
3.Some important concepts from illness/lived experience literature - Biographical disruption/loss of self/narrative
reconstruction/invisible diseases/stigma ................................................................................................................3
"Lay Experiences of health and illness: past research and future agendas" - Lawton ...................................................................... 3
Concept of stigma .............................................................................................................................................................................. 5
Experiences of Stigma and Discrimination among Adults Living with HIV in a Low HIV-Prevalence Context: A qualitative
Analysis. AIDs Patient Care and STDs................................................................................................................................................. 5
'I Just want permission to be ill': Towards a sociology of medically unexplained symptoms. (Nettleton) ....................................... 7
The Body Projects of University Students with Type 1 Diabetes (Balfe) ........................................................................................... 9
Module 2 ................................................................................................................................................... 11
1.Communication Micro-skills .............................................................................................................................. 11
Therapeutic Communication micro-skills (video) ............................................................................................................................12
Dadirri ..............................................................................................................................................................................................14
Nurse-Patient communication: An exploration of patients' experiences (McCabe).......................................................................14
1.Emotional Intelligence.......................................................................................................................................16
Nurses' resilience and the emotional labor of nursing work: An integrative review of empirical literature .................................17
2.Communication Challenges - communicating with people with dementia and with patients in ICU ..................... 18
Implementing Person-Centered Care in Residential Dementia Care ..............................................................................................18
A qualitative study into the lived experience of post-CABG patients during mechanical ventilator weaning ...............................20
3.Conceptualizing Nurse-patient relationships ......................................................................................................21
Mirror, Mirror on the Wall, 2014 Update: How the U.S. Health Care System Compares Internationally ......................................22
A theoretical framework for person-centered nursing. In McCormack, B. & Mc Cance, T., Person-Centered Nursing: Theory and
Practice.............................................................................................................................................................................................22
Conceptualizing the nurse-patient relationship. (Hagerty & Patusky) ............................................................................................24
4.Dealing with so called "difficult" patients ..........................................................................................................27
Challenging interpersonal encounters with patients. In Stein-Parbury, J., Patient and person: Interpersonal skills in nursing
(Stein-Parbury) .................................................................................................................................................................................27
Management of 'surplus suffering' in relapsing remitting multiple sclerosis to improve patient quality of life (Burke) ...............29
Nurses' experiences of cancer (Corner) ...........................................................................................................................................31
, 2
Module 1:
1.Qualitative Research for Understanding Illness Experience
Illness experience: term to describe the experiences of people with a physical illness
Lived experience: term to describe experience of people who are struggling with mental health issues
Modern Medicine Criticized - Objectify and Dehumanize Patients (Med and Bower)
• In medicine = patient's experience of illness = report of potential existence of disease
• Major Issues:
o Not all cases of illnesses/mental distress can be assigned the same conventional diagnosis
o Patients bring range of difficulties to consultation with health professionals OTHER THAN actual
physical symptoms or mental distress e.g. difficulty managing medications, suffering related to
disease/disability, desire for information and autonomy in decision making, family, cultural or social
issues that impact on health outcomes
o Same diagnosis of illness/distress does not mean same experience
• E.g. leg fracture may not be distressing for an office worker but it may end a career of an
athlete
o Treatments that are the 'same' may have different impacts
• E.g. impact of surgery - loss of a limb (below the knee amputation) is a very different
experience compared to a mastectomy for a woman with breast cancer
Patient more than the 'possessor of the body of disease' (Lawton) - care more important than delivery
of medical treatments
• To provide effective care = need to better understand patients actual experience + related needs -
RESEARCH ON ILLNESS/LIVED EXPERIENCE = QUALITATIVE
• Illness/lived experience literature explore common themes that occur for people who suffer a particular
illness/lived experience of mental distress
• Understanding common issues - help to connect with patients + build trust + help understand how to best
manage care
o E.g. if we understand that young people with diabetes are embarrassed about injecting insulin inn
public - we might consider other options for care
Person/Patient Centered Care (PCC)
• PCC: ideology of care and a process that privileges the patient's experience and narrative over a
clinician-centered or disease centered focus
• Connecting with the person and their family/carers
• Humanizes care - focus on person's physical, social and personal history + biography of illness and care
• Emphasize right of person to choose + to be active in their own care
• Support individual's rights, values and beliefs
• Correlated with:
o Better recovery from illness/pain
o Better emotional health 2 months later, and fewer diagnostic tests and referrals
o Person-focused approach meant that suicidal men were more likely to return to health services and
less likely to attempt suicide
2.Finding research literature and understanding illness/lived experience
Using keywords and subject headings?
• Keywords: terms that describe a topic, subject, or concept
o May be single word or phrase
o Most databases can be searched with keywords
o Will find exact terms in article field record (not whole article) e.g. title or abstract
o Not all articles may be relevant
o Important to include synonyms or alternate terms in keyword search
• E.g. cancer screening - can also use mammogram, cancer test
o When to use:
• when no subject heading available
• exploring emerging areas = large number of results (some will be irrelevant)
, 3
• Subject Headings: words or phrases assigned to articles as they are added to the database
o Describe contents of the article - make them easier to find
o Medline, Pubmed, Embase
o Check definition of subject heading using 'scope' button
o Arranged in hierarchy
o When to use:
• scoping out a topic
• have little time to search
• include as many synonyms as possible (includes international spelling variations) = fewer but
more relevant results
• Useful to use combination of keywords and subject headings when conducting comprehensive search
(particularly true for systematic reviews)
Search Smarter: creating searching strategies
• OR: used to group similar terms
• AND: used to connect words together to create search stream
• Use brackets to group similar words together
Searching health databases
• Two types of databases: Subject Heading and Keywords
• Three main differences between databases:
o Subject headings
o Search history
o Limits
• Can limit your search by age groups, publication type or clinical queries
Finding Qualitative Literature
• Three ways to limit search to qualitative:
o Filters
• Clinical queries: high sensitivity (broadest), high specificity (most targeted), best balance
(best balance between sensitivity and specificity)
o Subject headings
o Keywords
3.Some important concepts from illness/lived experience literature - Biographical disruption/loss of
self/narrative reconstruction/invisible diseases/stigma
"Lay Experiences of health and illness: past research and future agendas" - Lawton
Modern medicine objectifies + dehumanizes patients (Wallace Bologh)
• Alienating self from body
• Patient = possessor of the body or illness
• Professional dominance of medical system - physicians possess + monopolize medical knowledge =
alienates patients from decision-making
• Medical system alone that is responsible for the ways in which patients experience self and body during
illness
Wide Range Issues Experienced for Individuals with Disease/Disability - Qualitative Data (in-depth
interviews + rich and textured description)
• Stigmatization (real and anticipated)
• Uncertainty and fear
• Strategies employed to avoid and neutralize these phenomena
• Discrimination + isolation within/outside workplace
• Adjusting to + living with different types of medical technologies
, 4
Bury's chronic illness as biographical disruption - takes place on many different levels
• Experience of chronic illness can lead to a fundamental rethinking of a person's biography and self-
concept
• Chronic illness involves a recognition of the worlds of pain and suffering, possibly even death (normally
only seen as distant possibilities or unfortunate)
• Unanticipated diseases = shatter hope + plans for future
o Disrupt relationships + material and practical affairs
o Biographical shift from perceived normal trajectory to one fundamentally abnormal and inwardly
damaging
o E.g. arthritis = growing physical dependency on others
• One's ability to mobilize physical and other resources may be crucial to the ways in which illness is
experienced
Charmaz's loss of self
• Loss of self = former self-images crumbling away without a simultaneous development of equally valued
new ones
o Patients with restricted lives, experienced social isolated (discredited by self + others), experience
humiliation of being a burden
• Move away from view of suffering = physical discomfort
o Draws attention to complex and overlapping ways of how illness experience may reinforce and
amplify one another
o E.g. stigma with chronic disease prompt people to experience low self-esteem + withdraw from
social activities (quit work, limit social engagements) = absence of opportunities for self-validation
• Restricted life = exacerbates feelings of loss of self
William's narrative reconstruction
• Conceptual strategies people employ to create sense of coherence, stability and order in aftermath of
biographically disruptive event of illness onset
• Able to explore longer-term effects of chronic disease on self-concepts
• Highlights ways in which narrative reconstruction can be used to reconstitute + repair ruptures between
body, self and world by linking and interpreting different aspects of biography in order to realign present
and past and self and society
o Participants chose to home in on particular models
o People's accounts of causation are not simply concerned with beliefs about disease etiology BUT
constitute an imaginative attempt to find a legitimate and meaningful place for the chronic illness in
their lives
Age, timing and biographies: rethinking 'biographical disruption'
• Importance of age and stage in life course of when a person becomes unwell = central theme for
concept of biographical disruption
• E.g. stereotype of certain diseases being applicable for certain age groups - RA disease of older people
o OA being normal and inevitable in later life - older people view symptoms of OA as being normal
and integral part of biographies (biologically anticipated event)
• Age and accumulated life experiences of their information appeared to mediate perception + response to
illness
o E.g. working class people elderly "hard earned lives" (familiar with worlds of pain, suffering, death -
background exposure to WW2) = although stroke have considerable impact of life (affect how they
walk, talk, wash) it was perceived as a "normal crisis" + not really biographically disruptive
• Already experienced multi-morbidities prior to stroke - already have restricted lives
• E.g. men who infected with HIV through gay sex view it as biographically disruptive BUT men
infect with HIV through hemophilia treatment view it as form of biographical reinforcement
Being infected led them to reinforce measures of the sort already taken = no disruption
• Important to look at person's whole biography when contracted with particular disease
• Bury concept scrutiny - implies that bodies and selves are always taken for granted before onset of
disease this can be disrupted
