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Social status and living with a chronic illness: An exploration of assessment and meaning attributed to work and employment

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BACKGROUND Traditional measures of social status are predicated on position in the labour market. There has been less attention directed to the meanings of social position for people with a long-term condition whose relationship to employment is precarious. Previous research has demonstrated that the MacArthur scale is capable of capturing contextualised aspects of social status, which makes it a useful tool for exploring changes in meaning.AimsThe paper explores the meanings and experiences of social status of people living with a long-term condition with particular reference to employment status. METHODSA sample of 300 participants was drawn from diabetes and chronic heart disease registers of General Practices in North West England. A cross-sectional survey with nested qualitative interviews was used in collecting and analysing the data.FindingsHaving financial independence and participating in valued activities are more important for people with chronic illness than power and status mediated through the labour market. Income and the lack and loss of employment were given a central role in respondents' narratives reflecting the absence of acceptable alternative routes through which social status for those with a long-term condition can realistically be rebuilt outside of participation in the labour market. CONCLUSION Social participation, where people with chronic illness feel valued and of tangible utility to other people, might offer some opportunities for rebuilding social status outside the labour market. Chronic illness management interventions need to focus on improving people's engagement with such activities.
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Journal Title: Chronic Illness (CHI)
Article Number: 521641
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Article
Social status and living with
a chronic illness: An
exploration of assessment
and meaning attributed
to work and employment
Ivaylo Vassilev,
1,2
Anne Rogers,
2
Caroline Sanders,
1,3
Sudeh Chraghi-Sohi,
1,3
Christian Blickem,
1,3
Helen Brooks,
1,4
Dharmi Kapadia,
1
David Reeves,
1,3
Tim Doran
5
and Anne Kennedy
1,2
Abstract
Background: Traditional measures of social status are predicated on position in the labour
market. There has been less attention directed to the meanings of social position for people with a
long-term condition whose relationship to employment is precarious. Previous research has
demonstrated that the MacArthur scale is capable of capturing contextualised aspects of social
status, which makes it a useful tool for exploring changes in meaning.
Aims: The paper explores the meanings and experiences of social status of people living with a
long-term condition with particular reference to employment status.
Methods: A sample of 300 participants was drawn from diabetes and chronic heart disease
registers of General Practices in North West England. A cross-sectional survey with nested
qualitative interviews was used in collecting and analysing the data.
Findings: Having financial independence and participating in valued activities are more important
for people with chronic illness than power and status mediated through the labour market. Income
and the lack and loss of employment were given a central role in respondents’ narratives reflecting
the absence of acceptable alternative routes through which social status for those with a long-term
condition can realistically be rebuilt outside of participation in the labour market.
Chronic Illness
0(0) 1–18
!The Author(s) 2014
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DOI: 10.1177/1742395314521641
chi.sagepub.com
1
Greater Manchester Collaboration for Leadership in
Applied Health Research and Care, University of
Manchester, Manchester, UK
2
Faculty of Health Sciences, University of Southampton,
Southampton, UK
3
Centre for Primary Care, Institute of Population Health,
University of Manchester, Manchester, UK
4
School of Nursing, Midwifery & Social Work, University of
Manchester, Manchester, UK
5
Department of Health Sciences, University of York, York,
UK
Corresponding author:
Ivaylo Vassilev, Faculty of Health Sciences, University of
Southampton, Southampton, SO17 1BJ, UK.
Email: I.I.Vassilev@soton.ac.uk
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Conclusion: Social participation, where people with chronic illness feel valued and of tangible
utility to other people, might offer some opportunities for rebuilding social status outside the
labour market. Chronic illness management interventions need to focus on improving people’s
engagement with such activities.
Keywords
Health inequalities, social status, long-term conditions, capabilities, social networks
Received 13 October 2013; accepted 28 December 2013
Introduction
Income, education and occupation are
proxies for life chances influenced by
material resources and social position pri-
marily mediated through the labour
market. Objective measures of social
status (socio-economic status (SES)
1) pre-
dicated on personal income, education and
occupation have been widely used in
health research and convincingly demon-
strated that people who are better off tend
to be healthier.
1
However these measures
may not capture the fine-grained nuances
of social status for specific groups such as
those with a long-term condition (LTC).
Medical anthropologists have argued that
social status is defined differently across
cultural groups implying the need to
develop measurement tools adapted to
specific social situations and cultural
settings.
2
People with LTCs share a set of life
experiences that set them apart from the
general population. Having an LTC disrupts
people’s everyday life and requires changes
to familiar and valued practices (e.g. to
lifestyle or in relations at home, with
family members, friends or at work).
Living with an LTC requires on-going adap-
tion, and resilience.
3–5
The latter includes
the introduction of activities such as regular
monitoring, which needs to be undertaken in
the face of decreasing energy, mobility,
6,7
physical capacity and independence.
8
This
complexity suggests the need to explore
existing ways of measuring social status for
those with an LTC.
Subjective and objective measures
of social status
The MacArthur scale, developed as a meas-
ure of subjective social status (SSS),
9
has the
capacity to capture a wide range of influ-
ences in the assessment of social status
beyond the traditional items of income,
education and occupation 2
. These include
health, well-being, life satisfaction, social
trust, satisfaction with standard of living,
feeling financially stable, beliefs, values,
preferences, dispositions and contextual
expressions of people’s unequal access to
material resources and opportunities.
10–16
Previous research has also identified vari-
ation in subjective assessment of social
status over time,
17
in relation to gender,
6
ethnicity,
18,19
point in the life course
20
and
type of health outcomes.
13,14,21–25
These
findings suggest that the MacArthur scale
is a sensitive tool through which to explore
the social status of people with LTCs.
There is however at present lack of
agreement as to how SSS, as measured by
the MacArthur scale, should be interpreted.
Some authors have argued that SSS captures
non-material aspects of social status such as
hopelessness, general life control, beliefs,
values, preferences and dispositions.
13,15
This would indicate that SSS has more to
do with personal qualities and a subjective
sense of self-worth than with objective
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markers of social status. In contrast, other
authors have suggested that SSS is a sensi-
tive measure that captures the diverse mech-
anisms through which inequalities work or
the range of resources that people might be
able to draw on (e.g. social capital). SSS
measures are therefore best understood as
measures that are more context sensitive
than objective measures. The latter suggests
that SSS may capture subtle aspects of social
hierarchy, lifetime achievement or may be
an assessment of current and future
prospects.
10,11
The contrasting interpretations of SSS
are not necessarily incompatible. We argue
that they can be partially reconciled by
drawing on Amartya Sen’s notion of cap-
abilities. Capabilities are defined as the real
opportunities that people have to accom-
plish what they value, including actual
achievements and the opportunities that
have been available to them but have not
been taken.
26,27
Thus, while SES is primarily
to do with the question: What resources
does this person have? SSS, as measured by
the MacArthur scale, primarily addresses
the question: Is this person able to do what
she values? In particular, SES measures do
not directly address the question ‘resources
for what?’, and thus treat what people value
as a black box. However, inequalities in
access to resources (e.g. money) are only
relevant if they restrict people’s access to
things they value (e.g. one’s health).
We suggest that it is plausible to presume
that the MacArthur scale is a concrete
measure of social status capable of reflecting
a contextualised assessment by individuals
of their actual access to (material and non-
material) resources, as well as capturing
respondents’ capability to do what they
value. Furthermore, the capabilities
approach makes the assumption that expres-
sions of valued activities are not reducible to
subjective preferences, beliefs and values,
but that it is possible to make generalisable
statements about ways of life that are valued
by all. The latter might include being able to
live a ‘good enough’ life in reasonable
health, engage in critical reflection about
the planning of one’s life, having the bases of
and being treated with respect and having
control over one’s environment.
28,29
Subjective status and chronic illness
The capacity of the MacArthur scale to
capture the influence of material and non-
material factors, as well as to reflect the
contextual specificity of access to resources,
is likely to be an asset in illuminating the
meaning of social status for people with
LTCs. For example, the complex demands
associated with living with an LTC can
induce feelings of powerlessness, which in
turn can threaten people’s sense of security
and identity. Trying to ‘hold on’ to previous
roles and self-representations while needing
to ‘let go’ of these can lead to stress and a
sense of losing control over one’s life.
30
LTCs are more likely to develop later in
life impacting disproportionately on people
who are no longer part of the formal labour
market or have had to abandon paid work
due to poor health. Those who are socio-
economically disadvantaged are also more
likely to suffer from multiple LTCs, and
experience symptoms with greater intensity
and frequency.
31
The combination of these
factors is likely to create a vicious cycle, with
deprivation, lack of opportunities and dis-
advantage leading to more physical and
mental ill-health,
32
and less access to sup-
port than those in better socio-economic
circumstances.
33–35
There is also evidence that the amount of
social network support rises in response to
peoples’ declining health.
36
While this is
likely to have a positive effect on people’s
health,
37
it may also lead to a sense of
powerlessness and loss of autonomy.
38,39
Growing dependence on network members
can make people with LTCs feel they are a
burden to others, and can damage their
Vassilev et al. 3
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sense of self-worth. This is especially likely
where network members are resource poor
and where the person with an LTC is unable
to reciprocate.
40–42
Living with an LTC has
implications for peoples’ perceived and
actual life chances, sense of control over
their lives, perception of dignity and worth
in relation to others, and social position.
43,44
Here we draw on an empirical study of
people with LTCs, selected from general
practitioner (GP) practices located in
deprived areas in Greater Manchester. We
were interested to find out how respondent’s
discussions about the MacArthur scale can
inform understanding of the meanings
attributed to social status by people with
an LTC. We aimed to explore the interpret-
ative meanings that respondents gave to the
SSS measure, and to consider the implica-
tions for policy in terms of the development
of targeted interventions for people with
LTCs.
Methodology
Setting, sampling and data collection
A cross-sectional survey was undertaken in
2010 in Greater Manchester, North West
England. This is a region, which has the
lowest life expectancy in England and car-
diovascular diseases are the single most
important source of morbidity and prema-
ture mortality in the conurbation. A rando-
mised sample of 300 patients with diabetes
and heart disease were recruited from the
GP registers of 19 GP practices most of
which were located in deprived areas of the
Greater Manchester. A postal questionnaire
including questions on socio-demographic
background, medical conditions, health
status, health care utilisation, social capital
and social support was distributed. This was
followed by face-to-face semi-structured
interview that was conducted in partici-
pants’ homes. The face-to-face interviews
included questions about the patient’s per-
sonal social networks implicated in
providing support with a chronic illness
such as the perceived support provided by
carers, relatives, friends, neighbours, and
statutory and voluntary services. Networks
of support were mapped using a diagram of
three concentric circles reported elsewhere.
45
In total, 2001 letters were sent and 314 reply
slips were returned (15.69% response rate).
Fourteen participants were excluded from
the analysis because they did not have a full
dataset (postal and network interview). The
final analysis included 300 participants and
the sample characteristics are presented in
Table 1. In the MacArthur scale, respond-
ents were asked to place themselves on
the ladder in terms of wealth, education
and occupation, in relation to other people
in the UK. The question was worded,
namely:
Think of this ladder as representing where
people stand in our society. At the top of
the ladder are the people who are the best
off – those who have the most money, most
education and best jobs. At the bottom are
the people who are the worst off – who
have the least money, least education, and
the worst jobs or no jobs. The higher up
you are on this ladder, the closer you are to
the people at the very top and the lower
you are, the closer you are to the people at
the very bottom. Please mark a cross on the
rung of the ladder where you would place
yourself.
In another section of the questionnaire
respondents were asked to assess the social
status of each of their network members in
relation to themselves. Respondents were
given five options: a lot higher, higher, same
as myself, lower and a lot lower.
Ethics
The Collaboration for Leadership in
Applied Health Research and Care for
Greater Manchester is a partnership
between the Greater Manchester NHS
Trusts and the University of Manchester
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and is part of the National Institute for
Health Research.
Ethical approval was obtained from the
Greater Manchester Research Ethics
Committee in February 2010 (ref: 10/
H1008/1). Written informed consent was
obtained from respondents and all collected
data were treated in accordance with all the
requirements of the ethics committee,
including confidentiality and anonymity.
Mixed methods approach to analysis
The use of mixed methods, combining quali-
tative and quantitative techniques, for data
collection and analysis is predicated on the
premise that different techniques can com-
plement each other and comprehensively
address a specific research question. Using
a mixed methods approach can potentially
lead to a deeper understanding of the topics
under investigation by bringing together the
strengths of qualitative and quantitative
techniques.
46,47
The quantitative analysis
was aimed at testing the relationships of
three sets of predictors of the MacArthur
scale: (1) SES and material resources, (2)
network resources and social capital and (3)
capabilities to do things that are valued. The
qualitative analysis was aimed at identifying
the key themes illuminating the meaning of
social status. The qualitative phase of the
Table 1. Sample characteristics.
5
N(%)
Age
Mean ¼65.3
(SD ¼12.62)
Sex
Male 193 (64.3)
Female 107 (35.7)
Tenure
Owns 187 (62.3)
Rents 113 (37.7)
Income (total annual household)
>¼£5199 17 (5.7)
£5200–£10,399 82 (27.3)
£10,400–£15,599 79 (26.3)
£15,600–£20,799 49 (16.3)
£20,800–£25,999 27 (9.0)
£26,000–£31,999 19 (6.3)
£32,000–£51,999 18 (6.0)
£52,000þ9 (3.0)
Occupational class (NS-SEC)
Higher managerial 33 (11.0)
Lower managerial 57 (19.0)
Intermediate occupations 38 (12.7)
Small employers 43 (14.3)
Lower supervisory 37 (12.3)
Semi-routine occupations 37 (12.3)
Routine occupations 55 (18.3)
Education
No qualifications 131 (43.7)
GCSEs 40 (13.3)
A Levels and other qualifications 38 (12.7)
NVQ, HNC or HND 35 (8.3)
First degree or professional
qualification
53 (17.7)
Higher degree 13 (4.3)
Employment
Retired 148 (49.3)
Long-term sick 52 (17.3)
Looking after home and family 19 (6.3)
Seeking employment 6 (2.0)
In paid work 62 (20.7)
Voluntary work 1 (0.3)
In full time education 1 (0.3)
None of the above 11 (3.6)
MacArthur scale (from
lowest to highest)
1st rung 10 (3.33)
2nd rung 15 (5.0)
(continued)
Table 1. Continued
N(%)
Age
Mean ¼65.3
(SD ¼12.62)
3rd rung 25 (8.33)
4th rung 39 (13.0)
5th rung 64 (21.33)
6th rung 78 (26.0)
7th rung 32 (10.67)
8th rung 27 (9.0)
9th rung 3 (1.0)
10th rung 7 (2.33)
Vassilev et al. 5
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study was used to extend and help explain-
ing the findings from the quantitative phase.
Quantitative analysis
The primary measures of SES were house-
hold income, individual occupational class
and level of education. The study also
collected data on other variables associated
with access to material resources, most
notably home ownership, employment
status and an area-based measure of depriv-
ation (indices of multiple deprivation
(IMD)). Social support (social capital) was
measured through a set of health-related
measures including: the size of the support
network, number of people who provide
extensive and wide ranging support and a
broader set of questions about access to
everyday forms of support (‘resource gener-
ator’),
48
the presence of proximate children
and the number of people who are contacted
frequently. While the questionnaire was not
specifically designed to measure capabilities,
we used as proxy questions about health,
sense of normality (in relation to health) in
everyday life, burden to others, integration
and involvement with social activities,
neighbourhood safety, subjective perception
of happiness and well-being, and fatalism.
Detailed definitions of the measures used are
provided in Table 2.
We used univariate regressions (Table 3)
to examine the relationship between partici-
pants’ reported SSS as the dependent factor
and each separate measure of material and
social resources and capabilities. A series of
multivariate regression analyses followed.
Model 1 used income, occupational class
and education – our primary measures of
SES – as joint predictors of SSS. Model 2
added variables associated with access to
material resources, namely IMD, employ-
ment status and home ownership. We added
all measures of social support and capabil-
ities that had a univariate relationship with
SES at a p-value of 0.1 or less (we used
p<0.1 rather than p<0.05 to avoid exclud-
ing potentially important multivariate rela-
tionships prematurely). Backwards ‘stepwise
removal’ was then applied to reach a final
model (Model 3) in which all variables were
associated with SES at p<0.05 or less.
Qualitative analysis
The qualitative analysis was organised in
two stages. In Stage 1, all interviews were
audio recorded and the sections where
respondents spontaneously initiated a dis-
cussion about the two ladder questions were
transcribed verbatim. There were 130 inter-
views in which respondents made comments
in response to the MacArthur scale, and
there were 109 interviews in which respond-
ents discussed social status in relation to
members of their networks. There were 176
interviews (out of the 300) where the two
social status questions were followed by a
discussion. A thematic analysis was under-
taken of the transcribed interview sections.
The sections were first coded independently
by CS, SCS and CS and then the researchers
met to discuss, examine and agree on emer-
gent codes and themes. During these meet-
ings a list of final themes and the frequency
table of their occurrence was produced (see
Table 4). In order to gain more interpret-
ative depth as to how respondents under-
stood social status we looked, in Stage 2 of
our analysis, at the broader context of
people’s life trajectories and their experi-
ences of living with an LTC. In Stage 2, a
thematic analysis was undertaken of a
subset of 35 interviews that represented
people who scored across the range of the
MacArthur scale. The interviews were tran-
scribed verbatim and thematic analysis was
undertaken. The researchers coded tran-
scripts independently (SC, SCS, CB and
IV) and then met to examine, discuss and
agree on emerging codes. A list of final
themes was produced. The results of the
quantitative and qualitative stages of the
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Table 2. Description of measured used.
Description (variable coding)
SES and material resources
Income What is your household’s total income from all sources?
(1: low – 8: high)
Occupational class Occupational class based on job title using ONS socio-
economic classification (1: professional – 8: manual)
Education Highest qualification achieved based on national qualifi-
cations framework (1: no qualifications – 8: higher
qualifications)
Home ownership Participants were allocated to one of two categories:
own home or rent (1: Own, 2: Rent)
Employment Status Employment status (0: not in employment, 1: in
employment, education or voluntary work)
Area characteristics
IMD Score on IMD (2007) (higher scores indicate areas that
are most deprived)
Health-related support
Size of support network Number of network members with a non-zero score on
any work dimension within the whole network
Illness work The total amount of illness specific work (health man-
agement, taking medications, regimen work, inter-
preting measurements, understanding symptoms,
making appointments) done within the network
across all network members
Practical work The total amount of practical everyday tasks (house-
keeping, repairing, child rearing, generic support
related to diet and exercise, shopping, personal care)
done within the network across all network members
Number of superhelpers A network member was defined as a superhelper if they
scored above threshold scores across different types
of work. These were then aggregated per network to
give a total number of ‘superhelpers’ per network
Broader social support
Proximate children Number of own children cohabiting, within a short walk
or within a short car or bus journey within the total
network
Frequent contact Number of network members in the support network
contacting the ego at least daily or weekly
Local amenities and neighbourliness Satisfaction with local amenities and neighbourliness
based on factor analysis of larger neighbourhood scale
Resource generator Based on scale derived by Webber and Huxley
48
Capabilities/ Capacities/ Valued activities
General health (self-rated) Self-rated general health (taken from SF-12) (1: poor
health – 5: excellent health)
Number of conditions Total number of health conditions the respondent has
Satisfaction with social involvement Satisfaction with opportunities to participate in local
activities
(continued)
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analysis were compared and a synthesis of
findings was discussed in relation to theories
of SSS and the capabilities approach. The
analysis of the findings informed the discus-
sion of the key questions raised in the paper.
Results
Quantitative findings
The univariate analyses of SSS with each
resource and capability measure are sum-
marised in Table 3. This indicates statistic-
ally significant (p<0.05) first-order
relationships with five of the six material
resource measures: income, occupational
class, education, home ownership and
IMD. SSS was related (p<0.05) to a
number of the indicators of capabilities
associated with: general health, number of
LTCs, number of social activity types, nor-
malisation, well-being/happiness and neigh-
bourhood. There were no significant
relationships with the social support
measures.
In the initial multivariate model (Model 1;
Table 5) SSS was significantly associated
with income; but after controlling for
income the (first-order) relationships with
education and occupational class were no
longer statistically significant. This model
explained relatively little of the variation in
SSS between respondents (adjusted
R
2
¼0.10). In Model 2, both income and
home ownership were significantly asso-
ciated with SSS, but again the model
explained relatively little of the variation in
SSS (adjusted R
2
¼0.13).
Model 3 introduced the social support
and ‘valued things’ (capabilities) measures.
We used backwards elimination to arrive at
the most parsimonious set of predictors,
which resulted in a final model consisting of
five variables: income, home ownership,
practical work, social involvement and hap-
piness. This model explained more of the
variation in SSS than the models based on
material resource variables alone (adjusted
R
2
¼0.20).
Table 2. Continued
Description (variable coding)
Social involvement The number of social activities
Normalisation New scale measuring the normalisation of the condition
and the work associated with the illness (higher score
indicates that the illness is more normalised for that
person)
Happiness Based on two questions: Taking all things together, how
happy would you say you are? All things considered,
how satisfied are you with your life as a whole
nowadays? (1: extremely dissatisfied – 10: extremely
satisfied).
Perception of safety within
local neighbourhood
Satisfaction with perceived safety of local neighbourhood
based on factor analysis of larger neighbourhood scale
Help given to others The total amount of support or help given to others
Burden The percentage of work done by the network member
who does the most work in the network
Fatalism The extent to which a person thinks that their illness is
due to chance or fate (0: low– 10: high)
SES: socio-economic status; IMD: indices of multiple deprivation.
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Qualitative findings
The qualitative analysis illuminated further
the central role that income and wealth play
in how people with chronic illness identify
their social status. Narratives of coping with
life with chronic illness were centred on two
broad themes, employment and wealth, and
emotional well-being and sense of control.
Employment and wealth
Although income, education and occupa-
tion were all explicitly introduced during the
interview as markers of SES, it was income
that was most prominently discussed (see
Table 4). The lower prominence of educa-
tion and occupation in respondents’
Table 3. Univariate relationships with SSS scores.
a
P-value
Individual characteristics
Age 0.095 0.101
Gender 0.010 0.864
SES and material resources
Income 0.262 <0.001
Occupational class 0.205 <0.001
Education 0.196 0.001
Home ownership 0.286 <0.001
Employment status 0.054 0.351
Area characteristics
IMD 0.187 0.001
Health-related support
Size of support network 0.029 0.618
Illness work 0.097 0.093
Practical work 0.120 0.038
Number of superhelpers
One superhelper 0.047 }0.357
Two or more superhelpers 0.095
Broader social support
Proximate children 0.096 0.096
Frequent contact 0.052 0.368
Local amenities and neighbourhood 0.138 0.812
Resource generator 0.033 0.574
Capabilities/ Capacities/ Valued activities
General health 0.283 <0.001
Number of conditions 0.166 0.004
Social involvement 0.217 <0.001
Satisfaction with social involvement 0.089 0.124
Normalisation 0.232 <0.001
Happiness 0.284 <0.001
Neighbourhood safety 0.178 0.002
Help to others 0.009 0.872
Burden 0.304 0.600
Fatalism 0.094 0.105
SSS: subjective social status; SES: socio-economic status; IMD: indices of multiple deprivation.
a
Standardised coefficient from univariate regression.
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Table 4. Frequency of themes discussed in relation to the MacArthur scale.
Ego
a
Alters
b
Ego or Alters
c
N(%) N(%) N(%)
Socio-economic status
Wealth/Income 82 (63.1) 51 (46.8) 110 (62.5)
Education 25 (19.2) 23 (21.1) 40 (22.7)
Occupation 19 (14.6) 27 (24.8) 41 (23.3)
‘Class’/’Status’ 12 (9.2) 7 (6.4) 17 (9.6)
Other resources
Employment 21 (16.2) 23 (21.1) 41 (23.3)
Home ownership 8 (6.2) 10 (9.2) 16 (9.1)
Locality 3 (2.3) 4 (3.7) 7 (4.0)
Family as a financial burden/resource 0 (0) 2 (1.8) 2 (1.1)
Language 0 (0) 1 (0.9) 1 (0.6)
Capabilities to do valued things
General capabilities 38 (29.2) 12 (11.0) 49 (27.8)
Happiness 17 (13.1) 4 (3.7) 20 (11.4)
Prospects 8 (6.2) 6 (5.5) 13 (7.4)
Satisfaction with occupation 8 (6.2) 1 (0.9) 9 (5.1)
Family as fulfilment 4 (3.1) 1 (0.9) 5 (2.8)
Emotional well-being 2 (1.5) 0 (0) 2 (1.1)
Health and physical capabilities
Health 10 (7.7) 8 (7.3) 17 (9.6)
Physical capability 4 (3.1) 5 (4.6) 9 (5.1)
Restricted resources and capabilities
Being retired 11 (8.5) 12 (11.0) 23 (13.1)
Age 2 (1.5) 6 (5.5) 7 (4.0)
Feeling/being worth/valued
Mental capability 4 (3.1) 11 (10.1) 15 (8.5)
Social worth 5 (3.8) 8 (7.3) 13 (7.4)
Matter to others 4 (3.1) 4 (3.7) 8 (4.5)
Moral behaviour or self-reliance 5 (3.8) 1 (0.9) 6 (3.4)
Motivated to better him/herself 3 (2.3) 3 (2.6) 6 (3.4)
Dignity/respect 3 (2.3) 0 (0) 3 (1.7)
Prestige 0 (0) 2 (1.8) 2 (1.1)
Hard work 0 (0) 1 (0.9) 1 (0.6)
Comparisons between past and present
16 (12.3) 4 (3.7) 19 (10.8)
Relativist perceptions about value and moral worth
Everyone is equal 1 (0.8) 2 (1.8) 3 (1.7)
It is subjective 2 (1.5) 1 (0.9) 3 (1.7)
Personal (dis)like 0 (0) 3 (2.6) 3 (1.7)
Adapting is in the mind 1 (0.8) 0 (0) 1 (0.6)
Total number of cases (out of 300) 130 (43.3) 109 (36.3) 176 (58.7)
SSS: subjective social status.
a
Discussion in response to the MacArthur scale only.
b
Discussion related to network members only (where they stand on the ladder compared with the respondent).
c
Discussion related to standing on the SSS ladder of the respondent or his/her network members.
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assessments may reflect the fact that many of
the respondents were retired and/or unem-
ployed as a result of their LTC. The latter
suggests a breaking of the link between
participation in the labour market and
access to resources. A loss of meaning
could also accrue from one’s history of
migration. However, it was the divide
between being employed or not that was
most central to respondents’ social status
assessment narratives.
When he [network member] was working
he would have been equal or above, but
I would say he is lower [on the social
ladder] now.
(Male, 50, income equal to mean, 3rd rung
of ladder)
If you had come to me 12 months ago,
I would have been three-quarter up
there ...We are not doing too badly. We
are not at a poverty state.
(Male, 61, income above mean, 5th rung of
ladder)
Being employed was associated with a
source of income, but of more salience was
the content of work, social environment,
personal satisfaction and sense of achieve-
ment of the work done, introducing a
dimension of quality and value in the
assessment.
Well, I certainly didn’t earn top money but
I earned enough to live on and I don’t
think money is everything. I think enjoying
your work and doing your work to the best
of your ability is what gives you satisfac-
tion ...I couldn’t go and do a job for seven
and a half hours a day not enjoy it.
Table 5. Summary of multivariate regression models.
Explanatory variables
Model 1 Model 2
a
Model 3
b
P-value
b
P-value
b
P-value
Individual characteristics
Age 0.16 0.012 0.14 0.030
Gender 0.03 0.546 0.04 0.501
SES and material resources
Income 0.24 <0.001 0.19 0.004 0.18 0.001
Occupational class 0.08 0.164 0.06 0.348
Education 0.11 0.063 0.11 0.065
Employment status <0.01 0.969 0.02 0.711
Home ownership 0.20 0.001 0.19 0.001
Area characteristics
IMD <0.01 0.992
Health-related support
Practical work 0.15 0.005
Capabilities/Capacities/Valued activities
Social involvement
c
Happiness
0.15
0.21
0.005
<0.001
Explained variance (%)
d
9.96 12.84 19.79
SES: socio-economic status; IMD: indices of multiple deprivation.
a
Final model after backwards elimination of non-significant variables.
b
Standardised regression coefficient.
c
Derived from face-to-face interviews.
d
Based on the adjusted R
2
for the model.
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Okay there are days when you don’t feel
like it, but you’ve got to enjoy what you’re
doing to do the best haven’t you, and
fortunately I did. I am middle of the road
I suppose.
(Female, 77, income equal to mean, rents
home, 5th rung of ladder)
In contrast, the lack of employment, or the
threat of losing it, due to chronic illness, was
linked to experiencing loss of status and lack
of future prospects restricting life chances.
I’ve no job; I can’t see me having prospects
of a job, due to my illness. Obviously, with
no job, there’s no money, I’m just on
benefits so that keeps you at a certain
level anyway, it keeps you at the
bottom ...You can’t go up on benefits.
(Male, 56, income below mean, 1st rung of
ladder)
Respondents experienced considerable diffi-
culty in rebuilding meaningful activities
outside employment. This was in part due
to living with a chronic illness and experien-
cing declining physical capacity, and was
illustrated by a 63-year-old retired woman,
on a very low income, who put herself at the
bottom of the ladder. She spoke a lot about
work, which she was forced to give up
because of her deteriorating health and she
now really missed it. She felt much better
when working. Work gave her a sense of
meaning, but she also thought that ‘work
makes you independent’, which she no
longer felt she had. She was also limited in
what she could do due to low income as she
got a ‘hundred and odd quid per week which
is crap’. This only allowed her to have a ‘ride
out’ in the car once a month as otherwise she
could not afford to pay for petrol. The sense
of value she attributed to being at work has
not been restored in her current life. The
restriction imposed by poor health was
made worse by a sense of having become a
burden: her doctor tells her she is an expen-
sive patient. Although she was aware of
local community groups that could
potentially offer such links, she did not join
as she thought they were ‘for old people’.
The only things that kept her going were
smoking and putting bets on the horses.
The central role given to lack of employ-
ment reflects the unconducive circumstances
within which respondents were unable to
enact processes of restorative action regard-
ing status. The latter might have indicated
the absence of good alternative routes
through which social status could be rebuilt
outside of the labour market. Where this has
been possible was achieved through the
availability of substantial amount of finan-
cial resources.
We don’t have a lot of money now because
I’ve chosen to give up my job, but we had a
decent amount of disposable income to
have holidays with, and just not have too
many worries and things.
(Female, 42, income above mean, 7th rung
of ladder)
Emotional well-being and sense of control
Social status was also associated with peo-
ple’s sense of control over their life, leading
to feelings of stress and depression. For
those who put themselves at the bottom of
the ladder this tended to be linked to stories
of lifelong struggles, coping with death or
terminal illnesses of close relations, or a
history of abuse. One of our respondents
had a history of abuse in childhood, but also
talked about being overweight and lacking
respect for himself.
I can be talking to you normal and the next
minute I sink into such despair that all I see
around me is just clawing up a mud pit
[...] I wake up with the black dog and I go
to bed stroking the black dog and it’s been
the bane of my life. I can be as happy as a
pig in a poke but it still comes, and I’m not
blaming no-one. I mean I’m not blaming
no-one, what happened to me when I was a
kid happened to thousands and perhaps
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they coped with it. I mean I am physically,
mentally, emotionally, I’ve not been able
to cope with it. I’ve hid it, I’ve put it to one
side, but the black dog has always been
there. He will always come out and no
matter what medication I take; it will
always raise its ugly muzzle.
(Male, 57, income below mean, bottom of
ladder)
A female respondent (65, income below
mean, bottom rung of ladder) reported a
stressful upbringing with some of her sibling
dying at an early age and her parents in
deprived conditions. This pattern was
repeated in her later life. She had an abusive
husband who she divorced and then brought
up the children by herself. She was the main
carer for her grown up children one of who
has health problems. She did not like the
area where she lived as her next door
neighbour was murdered in the house. Life
around her was chaotic and she felt con-
stantly stressed out. She linked having had a
stroke to stress, and her deteriorating health
added to her difficulties to cope. Going to
bingo was her main outlet, but she found it
difficult to maintain.
I: Have you always been a bingo goer?
Have you always gone to bingo?
R1: No, only in the later years, because I
don’t drink, I don’t go anywhere, so when I
did start going out I didn’t know where to
go. Then I went to bingo one evening and
thought oh well, even if it’s only once a
week it’s somewhere to go, you look
forward
to it.
[...]
R2:And then when she does manage to get
out she likes bingo, and they’ll ring her at
bingo, ‘what are you doing there? You
shouldn’t be at bingo.’
R1:‘What are you doing out? What are you
doing at bingo?’ And ringing right in the
middle of it, and you turn the phone off
and then there’s, ‘you turned the phone
off on me.’ That’s because I went to bingo.
R2: They’re telling her she shouldn’t go to
bingo ...She doesn’t go to pubs, or
anything ...Like they have social activities
what they do round here, and they’ve
asked you to go, like they’ve had one up to
now, haven’t they? ...But she doesn’t go
anywhere else, she just likes her bingo, but
then they moan about her wanting to go to
bingo ...So it’s just stressful for her all the
time.
Feelings of depression were also linked to
isolation. A 69-year-old male (retired,
income lower than mean, 2nd rung of
ladder), for example, discussed his experi-
ence of decline in physical capacity, pain and
low income, which made it difficult to keep
existing social contact and valued activities.
He had no friends and family nearby and
‘doesn’t speak to anybody’. Because he felt
very isolated he kept a diary with the
people who came to the house. He used
to meet friends in the pub, but could not do
this anymore and lamented the loss of his
social life. It was his faith that kept him
going.
Lack of capacity for maintaining social
contact could be made even more difficult
when linked to an ideology of self-reliance
and translated into values of independence
and pride where one ‘would hate to trouble
anyone for anything’ (female, 62, employed,
income below mean, 3rd rung of ladder).
However, deteriorating health required sup-
port from others, leading to a sense of losing
personal autonomy and social status. Thus,
a 46-year-old man talked about the decline
in physical ability since he became ill as the
‘end of the good ole days’! He used to have a
high pressure job (was a chef and there were
200 sittings in 2 hours), which he contrasted
with the present: he had arthritis in the
spine, he frequently had to stop when
walking, felt down and depressed because
he could not do things. He linked this to a
sense of decline in masculinity as he had
been head of the family, but now had to
depend on his wife and daughters.
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When asked about his position on the ladder
he said ‘I fell of it! – I’m not even on the
bleeding ladder, I’d be holding it’!
Discussion
The main aim of this paper was to explore
the meanings that people with chronic illness
attributed to social status as measured by
the MacArthur SSS scale. Our findings
indicate that access to material resources
plays a central role to how people with LTCs
assess their social status, income and wealth
being the most important factors. Thus,
having financial independence (associated
with higher income and the security of
owning one’s home, as well as being able
to live in a safe neighbourhood) took prece-
dence over factors such as education and
occupation. In the latter case, power and
prestige were more immediately mediated
through access to the labour market.
Employment was not identified as an
objective predictor of SSS (see Table 3).
However, the qualitative analysis under-
taken indicated that employment was a key
subjective marker and reference point
through which people construct narratives
about value, worth and capabilities in the
present context of life with an LTC. The
central role given to lack of employment
indicated the absence of routes through
which social status could be rebuilt outside
of the labour market. Assessment of social
status was therefore connected to past prac-
tices and collective identity,
49
but might also
reflect an unsubstantiated (according to our
findings) belief that employment improved
life chances. Such belief might be due to
employment operating as an ideology
according to which having just any job
would be preferable to having no job at all.
In addition, there is also stigma attached to
being unemployed.
50
However, bad jobs
(e.g. poorly paid, irregular, with high level
of uncertainty) would be unlikely to signifi-
cantly improve one’s health and life
chances.
51,52
The narratives about money
and employment were indicative of the
difficult circumstances, which many
respondents faced and the near impossibility
to enact processes of restorative action
regarding status.
Our findings also showed that access to
social capital has a more complex relation to
the SSS of people with LTCs than their
access to material resources. Specifically, we
found negative association between the
amount of practical work done by network
members and SSS. This might suggest that
while the support by network members can
be a valuable resource, as it can partly offset
the restrictions imposed by poor health,
accepting such support comes with the
awareness of the financial, time and emo-
tional pressures that this puts on network
members. Additionally, having to rely on
others for support with familiar everyday
tasks in particular is likely to be associated
with loss of independence and control over
one’s life. It is therefore an option that is
likely to only be used when absolutely
necessary and therefore might indicate
restricted physical capacity. Thus, network
support constitutes a specific type of
resource for people with LTCs, which
while relevant for their social position fol-
lows logic different to socio-economic fac-
tors such as income and wealth.
Our data also indicate that the meanings
that people attribute to social status are not
reducible to access to resources, and tran-
scend the boundaries of personal achieve-
ment and income. While variables such as
life satisfaction have been found to predict
SSS in previous studies such findings have
tended to be interpreted as primarily relating
to psychological factors and individual
traits. However as our qualitative analysis
demonstrated, people tended to be ‘happy’
or ‘unhappy’ because they had good reasons
to be ‘happy’ or ‘unhappy’ (e.g. life events
and opportunities), indicating that ratings of
happiness reflect actual life circumstances,
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and the presence of conditions that people
place value on.
53,54
This interpretation of
happiness is consistent with an underlying
assumption where subjective evaluations are
seen to carry an objective element which is
not reducible to individual emotions, pref-
erences or traits.
29
Thus, we found that assessments of pos-
ition on the social ladder were made in
relation to whether the people in our study
had a sense of control over their lives, and
how happy, stressed or depressed they felt as
a result; whether they felt physically inde-
pendent, valued by others and able to do
something worthwhile. Our findings indicate
that the possibility of achieving these values
was closely linked to having high income
and it also appeared to our respondents that
achieving them outside of the formal labour
market was unlikely. However, there was an
indication that social participation and
engagement with one’s social network
might offer some such opportunities. We
found a positive association between SSS
and social participation. This indicated that
weak and less visible ties such as member-
ship and regular involvement with social
groups and local organisations
55
might play
an understated role for the health and well-
being of people with LTCs.
56,57
For exam-
ple, weak ties have been found to be more
durable and less liable to loss over time than
strong ties. Weak ties also make it easier to
construct a sense of reciprocal exchange
than is the case with other health-related
relationships.
58
Given that SSS was asso-
ciated with a sense of worth, being respected
and mattering to others, social participation
can be seen as an indication of the import-
ance of feeling valued by others.
59,60
It is
also a potential avenue for establishing
meaningful and rewarding relationships
that are both outside of the formal labour
market and are not over-determined by the
cash nexus.
Involvement with social groups may be
an indication of a relatively good health that
makes such engagement possible. Good
health both as a value in its own right and
also as mediating access to the labour
market, social participation and personal
independence plays a central role to how
people with LTCs define their position on
the social ladder. This finding suggests that
health status is best seen as a predictor of
SSS, which is at odds with the main thrust of
the current use of the MacArthur scale
primarily using SSS as a predictor of
health outcomes. Drawing on our findings
it could be argued that objective and sub-
jective measures of social status offer differ-
ent perspectives on health inequalities, and
therefore are best used in conjunction with
rather than as alternatives to each other.
The potential importance of social par-
ticipation for introducing a sense of valued
social status has implications for policy as it
indicates that self-management approaches
need to be supplemented by a clearer recog-
nition of the role that social networks play in
the management of LTCs.
36
A cautionary
note is that while support by network mem-
bers and building social capital can partly
offset the restrictions imposed by declining
physical capacity accepting such support
might also be seen as a challenge to one’s
independence
61
and as imposing restrictions
of others.
62,63
Therefore interventions may
need to consider placing a stronger emphasis
on understanding social context and on
creating environments where people with
chronic conditions could be involved in
meaningful activities and feel valued and of
tangible utility to other people.
Limitations and future research
The qualitative findings of this study are
based on spontaneously generated discus-
sions prompted by the MacArthur scale and
the themes generated in a subset of the
interviews, which limits the interpretative
scope that such an analysis allows. Our
experience of using mixed methods in this
Vassilev et al. 15
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study indicates that the MacArthur scale can
be a useful heuristic device in exploring the
relationship between identity, class and
health, which tends to be a latent topic in
initial lay accounts of people who are most
exposed to disadvantaging environments.
64
The spontaneously generated reflections
around social status suggest that if the
scale is purposefully used for in-depth inter-
viewing it is likely to encourage reflections
that extend beyond public accounts of social
status, identity and health. Such research
could lead to the development of more
refined measures of capabilities and social
status.
Authors’ contributions
AR and CS developed the framework for the
project, DK, HB, CB, IV, SCS and AK were
involved with recruitment and data collec-
tion for the study, CS, SCS, IV, CB and AK
contributed towards the analysis of the
qualitative data, DK, HB, DR, TD and IV
contributed towards the analysis of the
quantitative data, AR, CS, SCS, CB, DR,
TD and IV interpreted the results, IV wrote
the first draft of the manuscript, AR, CS,
SCS, CB, DR, TD, IV and AK reviewed and
edited drafts of the manuscript. AR is the
principal investigator supporting the grant.
All authors have contributed to and
approved the final manuscript.
Conflict of interest
The authors do not have any competing interests
directly pertaining to this work.
Funding
This research has been funded by the
Collaboration for Leadership in Applied Health
Research and Care (CLAHRC) for Greater
Manchester. CLAHRC Greater Manchester is a
partnership between the Greater Manchester
NHS Trusts and the University of Manchester
and is part of the National Institute for Health
Research. All authors with the exception of Tim
Doran are members of the Patient Theme of
CLAHRC for Greater Manchester.
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18 Chronic Illness 0(0)
... In particular, chronic illness has an ever changing perspective that challenges patients to give meaning to their experience [2]. The person with a chronic illness lives in a double dimension of remembered health and current disease, so that the measure of wellness is determined by comparing the experience of what is known and understood about illness and vice versa [2][3][4]. Consequently, such a perspective of chronic disease contains elements of both illness and wellness. It involves beliefs, perceptions, attitudes and experience of what it means to be permanently ill in a particular context [2][3][4][5]. ...
... Consequently, such a perspective of chronic disease contains elements of both illness and wellness. It involves beliefs, perceptions, attitudes and experience of what it means to be permanently ill in a particular context [2][3][4][5]. For a patient needs to monitor his/her own health status, take the medication prescribed, interact with healthcare providers and manage the impact of illness on physical, psychological, and social levels. ...
... As the reality of such experience and its personal and social context changes, people's perspectives shift to the degree in which illness is in the foreground or background of their world. The perception of reality, not reality itself, is the essence of how people interpret and respond to their chronic illness [2][3][4][5]. Patients are always shocked by the deafening silence of those around them. Healthy people cannot gauge a form of anguish so alien to everyday experience. ...
... These definitions acknowledge the psychosocial position of service-users, particularly in terms of LTCs (Joachim and Acorn, 2000); where ill-health leads to a sudden change selfperception, body-image and identity, for example obesity or fatness (DeJong, 1980, Charmaz, 1983, Radley and Green, 1987, Radley, 1989, Goffman, 1990, Bircher, 2005, Jäger, Doller and Roth, 2006, Synofzik, Vosgerau and Newen, 2008, Vassilev, Rogers, Sanders et al., 2011, Backstrom, 2012, Vassilev, Rogers, Sanders et al., 2014, Fricker, 2019; and "biographical disruption" (Bury, 1982, p.167); with no hope of cure (Robertson, 2019).This potentially influences service-user behaviour (and coproduction of care) regarding prescribed medications, treatments, and recommended health and lifestyle changes (Hockey, Dilley, Robinson et al., 2014). ...
Article
Introduction Coproduction is a term which refers to how customers and service-users contribute to the planning, design, delivery, and implementation of goods and services, with service providers. Contemporary coproduction literature reflects a paternalistic perception of service-users with lower socioeconomic status and their interactions and relationships with specialist and non-specialist health professionals. Background Within the contemporary coproduction literature there is a suggestion that that individuals living within a context of socioeconomic deprivation are less equipped to coproduce care. Whilst service-users living with LTCs may have the knowledge, skills to manage their LTC despite socioeconomic disadvantage, there is a lack of research exploring these experiences. This study explored how coproduction is operationalised, and the impact of socioeconomic position and social capital, within the context of ongoing care across hospital and home settings. Theories of coproduction were applied, to explore shared-decision making, the implementation of care “at home”, and the dynamics of power between service-providers and service-users living with long-term conditions (LTC). Methods A mixed methods study was undertaken using, in-depth, face-to-face interviews of service-users from two Lymphoedema Clinics (City and rural) within a regional service; overt non-participant observations within the clinics, to observe the dynamic between the service-users and specialist health professionals. Service-users, partial postcodes and the addresses of General Practitioner” (GPs) were documented to identify the distribution of service-users attending the clinic 1, and to contextualise socioeconomic position of the study setting. NHS ethical approval for the study was obtained through the Regional Ethics Committee, and permission was gained to access all study Sites within the NHS organisations. Findings The findings of this study indicate that socioeconomic status does not prevent service-users from coproducing their care, in terms of their skills and knowledge or the “operant resources” they uses to engage in shared-decision making. However, a lack of economic resources and social capital, or “operand resources”, makes the coproduction of care more challenging for service-users; especially when treatment options are limited, and the implementation of care is within the “home”. In addition, service-users often perceived that non-specialist health professionals lacked the skills, knowledge and expertise to meet their care needs. Care was described by the participants as based upon a traditional, hierarchical and often biomedical model of care. This approach did not always align with the daily life of the participants, which involved balancing condition management against the desire to maintain normality, and achieve the goals that they identified as important The mitigating factor for many of the participants was the social capital and network of support they developed with the SHPs and their significant others; this evolved as an “operand resource”, in terms of trust and reciprocity and the tangible effect of co-implementing and co-delivering care. Conclusion This study addresses the research gaps related to exploration of coproduction for people with LTC, between hospital and home, and the need for more research to empirically evidence service-users’ experience. Social capital, trust, accountability, responsibility, and reciprocity are perceived as essential to operationalise the coproduction of care and actualise a more equitable partnership between service-users and service-providers.
... We included the MacArthur scale in the MS questionnaire to assess the patient's own perception of socioeconomic position in society. This tool has hardly been used in MS-research so far, but variants of it have been used in assessment of other chronic and autoimmune diseases (Rafiee et al., 2020, Vassilev et al., 2014. We found that self-perceived SES was just as associated with fatigue as were the objective measures of socioeconomic factors, as shown in Fig. 6. ...
Article
Objectives: Fatigue is one of the leading causes of reduced quality of life and inability to work in people with multiple sclerosis (pwMS). Currently, no treatment effectively ameliorates fatigue. We still know little about what causes fatigue and which factors may contribute to fatigue. Knowledge about socioeconomic factors’ role in fatigue might help us recognize strategies for the management of fatigue. Our aim was to explore whether socioeconomic factors are associated with the presence or level of perceived fatigue. Methods: This is a cross-sectional study of the MS population in three Norwegian counties. We used the Fatigue Scale for Motor and Cognitive Functions to assess self-reported fatigue, and obtained socioeconomic data from Statistics Norway and questionnaires. To assess self-reported anxiety and depression, we employed the Hospital Anxiety and Depression Scale. Clinical data were gathered from the hospital record system. Results: The response rate was 64 % (1599/2512). Seventy percent of the respondents were female, and the mean age was 52 years. Higher levels of education were associated with lower levels of fatigue. Receiving a disability pension, being divorced and having children were all factors associated with higher levels of fatigue, as were low parental education, low income, current smoking, and autoimmune comorbidities. We found a higher prevalence of anxiety and depression in pwMS with fatigue compared to those without fatigue Conclusion: Female sex, high level of disability, anxiety, depression and socioeconomic factors were independently associated with fatigue in contemporary patients with MS. These factors should be considered when devising management strategies.
... We included the MacArthur scale in the MS questionnaire to assess the patient's own perception of socioeconomic position in society. This tool has hardly been used in MS-research so far, but variants of it have been used in assessment of other chronic and autoimmune diseases (Rafiee et al., 2020, Vassilev et al., 2014. We found that self-perceived SES was just as associated with fatigue as were the objective measures of socioeconomic factors, as shown in Fig. 6. ...
Article
Full-text available
Objective Several studies report an impact of socioeconomic factors on access to disease modifying treatment (DMT) in multiple sclerosis (MS), with a trend of less access to more deprived persons. We investigated the impact of socioeconomic status (SES) on access to treatment in a well-defined Norwegian MS cohort. Methods This is a study of a population-based Norwegian MS cohort. We collected detailed information on disease development, progression, and DMT administered. Socioeconomic data was obtained from Statistics Norway and a questionnaire. Results We included 1314 persons with relapsing remitting MS at the prevalence date 01/01/2018. The population ever treated with DMTs is younger at onset, has shorter time from onset to diagnosis and lower expanded disability status score (EDSS) at diagnosis. The persons with MS (pwMS) with the highest levels of education, and those who are married are more likely to be ever treated with DMT. In the subgroup treated with a high efficacy DMT as a first drug, the pwMS are younger at prevalence date (39.9 years (SD 12.1)) compared with those who are not treated with a high efficacy DMT as first drug (43.8 years (SD 10.3)). The subgroup treated with a high efficacy DMT as a first drug have a 0.5 point higher EDSS at diagnosis compared to those not treated with a high efficacy DMT as a first drug. The level of education, household income and marital status are inversely related to access to high efficacy DMT as a first drug. None of the above differences persist when analyzing the subgroup diagnosed within the last six years (2012-2017). Conclusions Since 2012, the pwMS in this Norwegian cohort are treated equally with DMT in terms of different measures of socioeconomic position.
... Living with any long-term condition can affect people's lives, and change people's roles and responsibilities, financial situation and housing needs. 1 These changes can affect the individual, their families and their relationships and for all involved they can be difficult to accept and adapt to. It is known that living with diabetes has a negative effect on people's experiences and their emotional well-being, with higher levels of depression and other mental health problems than the general population. 2 Having a diagnosis of diabetes also reduces people's health-related quality of life. ...
Article
Full-text available
Aims Charcot neuroarthropathy (CN) is a complication of neuropathy, in people with diabetes. Treatment requires the prolonged wearing of an offloading device, which can be challenging. The importance of understanding people’s perspectives for promoting their engagement in self-management is well known. However, no such studies have been done in CN. This qualitative study aimed to understand people’s experiences of CN. Methods Semi-structured interviews with a purposive sample of 14 participants with CN, recruited from a randomised controlled trial. We gathered opinions, thoughts, and the meanings participants attributed to their experiences of CN and its physical, socio-economic, and physiological effects and how this affected their families, and relationships. We analysed the interviews using Inductive Thematic Analysis. Results Four analytic themes were identified: 1) ‘Trapped at home isolated and missing social life and daily life routines’; 2) ‘Disruption to people’s roles, responsibilities, relationships, and mobility, which people adapted to try and address and manage’; 3) ‘Pain which participants related to the direct or indirect consequences of wearing the cast or boot’; 4) ‘Blame for developing CN, attributed to themselves and healthcare professionals’. Participants described guilt about needing more support, expressing frustration, low mood, and low self-esteem. Conclusion This study highlights experiential aspects of the previously unrecognised burden of CN. Its physical, social, and emotional impact on participants and their families is substantial and sustained. There is a need to raise clinical awareness of CN and its wider effects.
... According to COR theory, individuals invest resources in a way that protects them against future resource losses. Chronic medical conditions often require long-term adaptations as they affect, and possibly even disrupt, everyday life (Vassilev et al., 2014). For many people with chronic illnesses, disease management is a vital part of their life and requires the interaction of clinical, social, and personal resources (Ørtenblad et al., 2018). ...
Preprint
Full-text available
Epidemiological data suggest that the prevalence of autoimmune diseases is increasing. Although evidence implies that people with chronic illnesses experience higher levels of burnout, there are few available insights for developing preventative interventions. This paper builds on the job-demands resources model (JD-R) to investigate the association between impaired health, burnout, and work engagement. In two longitudinal studies, we test the effects of job demands and resources among employed people with autoimmune diseases and identify individual health status as a personal resource within the JD-R model to investigate the incremental effects of autoimmune illness severity on burnout. Study 1 investigated the effects of illness severity amongst 87 employees with inflammatory bowel diseases. Controlling for job characteristics, perceived illness severity was the strongest predictor of e burnout and predicted the vigor subdimension of work engagement. In study 2, we analyzed the effects of illness severity amongst 129 employees with multiple sclerosis and found similar effects of illness severity on both outcomes. Our studies provide important insights for employees with chronic illnesses and the organizations in which they work and give indications for theory development, future research, and the development of interventions.
... According to COR, individuals invest resources in a way that protects them against future resource losses. Chronic medical conditions often require long-term adaptations as they affect, and possibly even disrupt, everyday life (Vassilev et al., 2014). For many chronically ill people disease management is a vital part of their life and requires the interaction of clinical, social, and personal resources (Ørtenblad, Meillier, & Jønsson, 2018). ...
... According to COR, individuals invest resources in a way that protects them against future resource losses. Chronic medical conditions often require long-term adaptations as they affect, and possibly even disrupt, everyday life (Vassilev et al., 2014). For many chronically ill people disease management is a vital part of their life and requires the interaction of clinical, social, and personal resources (Ørtenblad, Meillier, & Jønsson, 2018). ...
Conference Paper
Although chronic illnesses are prevalent and increasing among the workforce in the US and Europe, their consequences are rarely attended to in theoretical considerations and empirical analyses on work and health. In this paper, we analyze the impact of chronic illnesses and their perceived severity on employee burnout in two studies including employees with multiple sclerosis, rheumatoid arthritis, and inflammatory bowel diseases. In the first study, we show that people with a chronic illness report more higher burnout levels compared to employees without any chronic medical conditions. Furthermore, we show that the perceived severity of the illness is associated with higher levels of exhaustion burnout in two cross-sectional analyses. In the second study, we show that the perceived severity of the illness predicts exhaustion burnout 6 months later. Our results strongly imply the inclusion of health status and chronic illness into occupational health research and practice.
... Work can also be applied as a ''subjective marker and reference point through which people construct narratives about value, worth and capabilities" (p. 286) [15]. ...
Article
Aims: The aim was to understand diabetes-related barriers and successes that people with diabetes (PWD) have in the context of work outside the home. Methods: The DAWN2 survey of adults with type 1 or type 2 diabetes mellitus contained open-ended items about living with diabetes. All responses to these questions were reviewed and references to worklife were extracted for analysis. An emergent coding schema was developed and validated by two independent coders (kappa = 0.875). Results: In total, 328 PWD wrote about work, 93 (28%) with type 1 and 235 (72%) with type 2, of whom 90 took insulin. Analysis generated five themes: (1) Work as context for learning about diabetes; (2) Work as an arena for personal achievement and self-identity with diabetes; (3) The demands of work conflict with the demands of diabetes self-care; (4) Discrimination and stigma in the context of work; and (5) Social support in the context of work. Several of these themes identify challenges relating to the impact of diabetes upon work, and vice-versa. However, coping strategies and supportive social relations generated affirmative psychosocial experiences. Conclusion: The challenges that diabetes, its treatment, and its complications can have for working adults highlights the importance of social support in the work environment.
... In order to fully understand the role of different network members in relation to illness management, we need to conceptually understand the impact of living with a chronic illness and how illness management is enacted in everyday life. In order to do this, we will draw on the notions of "illness work" which are associated with the management of chronic conditions (Corbin & Strauss, 1985Vassilev et al., 2011;Vassilev, Rogers, Sanders, et al., 2014). For the purposes of presentation here, work categories have been combined into three categories: emotional, practical, and biographical (definitions provided in Fig. 1). ...
Article
Full-text available
One of the ideological foundations of the modern welfare states is the belief that people can be made happier by providing them with better living conditions. This belief is challenged by the theory that happiness is a fixed 'trait', rather than a variable 'state'. This theory figures both at the individual level and at the societal level. The individual level variant depicts happiness as an aspect of personal character; rooted in inborn temperament or acquired disposition. The societal variant sees happiness as a matter of national character; embedded in shared values and beliefs. Both variants imply that a better society makes no happier people. Happiness can be regarded as a trait if it meets three criteria: (1) temporal stability, (2) cross-situational consistency, and (3) inner causation. This paper checks whether that is, indeed, the case. The theory that happiness is a personal-character-trait is tested in a (meta) analysis of longitudinal studies. The results are: (1) Happiness is quite stable on the short term, but not in the long run, neither relatively nor absoloutely. (2) Happiness is not insensitive to fortune or adversity. (3) Happiness is not entirely built-in: its genetic basis is at best modest and psychological factors explain only part of its variance. The theory that happiness is a national-character-trait is tested in an analysis of differences in average happiness between nations. The results point in the same direction: (1) Though generally fairly stable over the last decades, nation-happiness has changed profoundly in some cases, both absolutely and relatively. (2) Average happiness in nations is clearly not independant of living conditions. The better the conditions in a country, the happier its citizens. (3) The differences cannot be explained by a collective outlook on life. It is concluded that happiness is no immutable trait. There is thus still sense in striving for greater happiness for a greater number.
Article
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In this interpretive study, the authors aimed to describe family responses to type 2 diabetes in Chinese Americans as reported by persons with diabetes (PWD) and spouses. Twenty participants representing 16 families completed multiple group interviews. The authors elicited positive and difficult diabetes care narratives and conducted narrative and thematic analysis of transcribed interview texts. Accommodation, the key family response, comprised the enactment of social concerns and practices to balance quality of life for individuals and families with quality of diabetes care. PWDs' accommodation included negotiating disease disclosure, protecting the family's meals, and maintaining ease in family relations despite diabetes symptoms. Accommodation by family members included developing shared diabetes care practices and indirect approaches to disagreements about diabetes management.
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The idea that social inequality has deleterious consequences for population health is well established within social epidemiology and medical sociology (Marmot and Wilkinson, 2001; Scambler, 2012). In this article, we critically examine arguments advanced by Wilkinson and Pickett in The Spirit Level (2009) that in more unequal countries population health suffers, in part, because of the stress and anxiety arising from individuals making invidious or shame-inducing comparisons with others regarding their social position. We seek to extend their arguments, drawing on sociologically informed studies exploring how people reflect on issues of social comparison and shame, how they resist shame, and the resources, such as ‘collective imaginaries’ (Bouchard, 2009), which may be deployed to protect against these invidious comparisons. We build on the arguments outlined in The Spirit Level, positing a sociologically informed account of shame connected to contemporary understandings of class and neoliberalism, as well as inequality.
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The distribution of the roles and responsibilities of long-term condition management (LTCM) outside of formal health services implicates a wide set of relationships and activities of involvement. Yet, compared to studies of professional implementation, patient systems of implementation remain under-investigated. The aim of this paper is to explore the work, meaning and function attributed to 'weaker' ties relative to other more bonding relationships in order to identify the place of these within a context of systems of support for long-term conditions. This is a mixed methods survey with nested qualitative study. A total of 300 people from deprived areas in the North West of England with chronic illnesses took part in a survey conducted in 2010 to 2011. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. Notions of 'work' were used to describe activities associated with chronic illness and to identify how weaker ties are included and perceived to be involved through social network members (SNM) contributions. The results provide an articulation of how SNMs are substantially involved in weak tie illness management. Weaker ties constituted 16.1% of network membership involved in illness work. The amount of work undertaken was similar but less than that of stronger ties. Weaker ties appeared more durable and less liable to loss over time than stronger ties. The qualitative accounts suggested that weak ties enabled the moral positioning of the self-managing 'self' and acted on the basis of a strong sense of reciprocity. Weak ties act as an acceptable bridge between a sense of personal agency and control and the need for external support because it is possible to construct a sense of moral acceptability through reciprocal exchange. Access to weak tie resources needs to be taken into account when considering the ways in which systems of health implementation for chronic illness are designed and delivered.
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