Impact of patient suering on caregiver well-being: The case

of amyotrophic lateral sclerosis patients and their caregivers

Kathrin Boerner
a
* and Steven E. Mock
b
a
Research Institute on Aging, Jewish Home Lifecare/Brookdale Department of Geriatrics &
Palliative Medicine, Mount Sinai School of Medicine, New York, USA;
b
Department of
Recreation & Leisure Studies, University of Waterloo, Ontario, Canada
(Received 26 April 2011; nal version received 9 August 2011)
The impact of patient suering on family caregivers is an understudied but
important topic. This study of patients with amyotrophic lateral sclerosis (ALS)
and their caregivers examined the associations of two components of patient
suering: patient physical symptoms, and mental distress, as well as the patients
support for the caregiver, with caregiver well-being. The sample consisted of 52
patients with ALS and their caregivers. Patients and caregivers each completed a
structured survey assessing multiple domains including demographics, health, and
well-being. Specically, patients rated their own physical symptoms and mental
distress. Caregivers rated their own daily aect, and the extent to which they
perceived the patient as supportive. Caregivers also reported whether or not they
had found any benet in dealing with the patients illness. Regression analyses
yielded signicant associations of patient distress with caregiver negative aect;
patient support was associated with greater caregiver positive aect, and patient
symptoms and support were associated with greater likelihood of caregiver
benet nding. There was a signicant two-way interaction of patient symptoms
by support, namely, benet nding was not only more likely with greater physical
suering and patient support, but it was also the case that caregivers who
perceived the care recipient as unsupportive could only nd benet when this
person experienced intense physical suering. Support interventions for ALS
patients and their caregivers should devote particular attention to how caregivers
may be aected by witnessing their loved ones suerings, as well as identify and
address challenges in support exchanges between caregivers and patients.
Keywords: suering; amyotrophic lateral sclerosis; caregiving; support
Introduction
Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease that causes
severe physical disability, the eventual loss of functioning of all limbs, speech,
swallowing, and breathing, and has a median survival time of 3.5 years (e.g.
Rowland & Schneider, 2001). With little realistic hope for a cure, adjusting to the
progressive deterioration of the disease represents a serious challenge for patients
and caregivers (Young & McMicoll, 1998). ALS caregiving tends to be an intensive
task; and primary caregivers spend a median of 11 hours per day caring for patients,
even with homecare assistance (Krivickas, Shockley, & Mitsumoto, 1997).
*Corresponding author. Email: kboerner@jhha.org
Psychology, Health & Medicine
Vol. 17, No. 4, August 2012, 457466
ISSN 1354-8506 print/ISSN 1465-3966 online
2012 Taylor & Francis
http://dx.doi.org/10.1080/13548506.2011.613942
http://www.tandfonline.com
However, the physical aspects of the illness or degree of impairment are not
necessarily what impacts caregivers the most. Although consistent associations have
been found between mental distress and various aspects of psychological well-being
of ALS patients and their caregivers (e.g. Olsson, Markhede, Strang, & Perrson,
2010; Pagnini et al., 2011; Rabkin, Albert, Rowland, & Hiroshi, 2009), associations
of caregiver outcomes with patient symptoms or impairment are less clear. Some
studies have found signicant positive relationships between patients loss of
physical functioning and poorer caregiver outcomes (e.g. Pagnini et al., 2010), but
others have found no such relationships (e.g. Olsson et al., 2010; Rabkin et al.,
2009). The type of symptoms being considered is also critical. For example, Chio`
et al. (2010) found that more severe neurobehavioral symptoms in patients were
associated with poorer caregiver outcomes. However, the type of symptoms
described (e.g. apathy and disinhibition) seems to reect behavioral and mood
problems more than physical functioning, which means that they probably represent
mental health as well as physical status. It is possible that patient physical symptoms
and distress could act in concert in their impact on the caregiver. For example, in a
study of cancer patient-caregiver dyads, patient symptoms aected caregiver
depression indirectly via patient depression (Kurtz, Kurtz, Given, & Given, 1995).
What is clear is that the concordance between caregiver and patient distress tends to
be high, and that caregiver mental status can have a great inuence on patients. This
suggests that attention to the mental health needs of caregivers may not only have
the benet of relieving the caregivers distress but also alleviate patient distress (e.g.
Olsson et al., 2010; Rabkin, Wagner, & Del Bene, 2000). Thus, planning regarding
ALS care should take into account caregivers well-being, their coping abilities,
and needs.
In the more general caregiving literature, patient psychological distress and
physical symptoms and their impact on both patients and caregivers have recently
been discussed in terms of manifestations of patient suering and what it may mean
for caregivers to witness this suering. In their groundbreaking review paper on
patient suering and caregiver compassion, Schulz et al. (2007) noted that while
patient suering has been an important topic of interest in research on chronic illness
for a long time, there is a paucity of studies directly addressing the impact of patient
suering on family caregivers. The authors draw on existing literature to identify
three possible components of suering physical (e.g. pain), psychological (e.g.
depression), and existential manifestations (e.g. spiritual well-being). They further
propose a heuristic framework linking patient suering and caregiver compassion/
outcomes to guide research in this area. The dierent types of suering are each
expected to inuence elements of caregiver compassion. Compassion is thought to
consist of positive and negative emotions experienced by the caregiver toward the
patient, and is expected to aect helping behavior as well as the mental and physical
health of the caregiver. Finally, aspects pertaining to the nature and quality of the
relationship between the patient and the caregiver are thought to moderate the
association between patient suering and caregiver reactions.
Recent research has highlighted the importance of patient support for caregivers
in ALS patientcaregiver relationships. Rabkin et al. (2009) reported that, in
addition to patient distress, patients degree of supportiveness inuenced caregiver
mood (perception that care recipient was not supportive was related to more
negative caregiver aect). These ndings suggest that patients play an important role
in providing positive feedback to caregivers. However, the study examined neither
458 K. Boerner and S.E. Mock
dierential eects of patient suering and support nor explored possible moderator
eects among these predictors.
Thus, we draw on the model by Schulz et al. (2007) and previous ALS research to
examine the main eects of two distinct suering components, patient symptoms and
distress, as rated by the patient, as well as perceived patient support, as rated by the
caregiver, with an interest in the relative strength of these eects in their impact on
caregiver outcomes. For example, it is possible that having a supportive patient has a
greater impact on caregiver well-being than the degree of the patients suering itself.
In addition, we explore the idea of moderators in the association between patient
suering and caregiver outcomes. According to the Schulz et al. (2007) model, the
impact of patient distress on caregiver outcomes may be moderated by patient
support; also, the impact of patient symptoms on caregiver outcomes may be
magnied by (i.e. moderated) either patient distress or support.
We focus on three caregiver outcomes for the following reasons. We chose aect
rather than depression because extensive work on the emotional impact of ALS
caregiving has shown that the predominant picture is distress rather than psycho-
pathology in the caregiver (Rabkin et al., 2009). Moreover, we include both positive and
negative aect because these distinct aspects of a persons daily emotions are known to
coexist even under the most challenging life conditions (Folkman & Moskowitz, 2000).
We also include benet nding among caregivers as an outcome because research
evidence has demonstrated that it is an adaptive coping strategy (Pakenham, 2007), and
that it seems important to learn more about factors that may promote or impede a
caregivers ability to nd benet in ALS caregiving (Rabkin et al., 2000).
Regarding the role of physical and psychological suering for caregiver
outcomes, the conceptual framework by Schulz et al. (2007) purports that both
components of suering should impact caregiver aect negatively. At the same time,
they should trigger compassion, which is thought to involve positive feelings toward
the patient and the care situation. Such positive thoughts related to the illness,
patient, and care needs have also been found in reports of benet nding among
caregivers of ALS patients (Mock & Boerner, 2010). We thus predict a negative
impact of patient symptoms and distress on caregiver aect, and a positive impact on
caregiver benet nding, which means that exposure to greater suering should be
associated with a higher likelihood of benet nding. We further explore whether
patient symptoms and distress act in concert to have an impact on caregiver well-
being. Specically, we examine whether patient distress moderates the eect of
patient symptoms on the caregiver. Finally, we expect that patient support to the
caregiver will generally have a positive impact on caregiver outcomes, and that it will
moderate the eect of both patient symptoms and distress on these outcomes.
Method
Participants
Participants were recruited in Canada from a specialized ALS clinic that operates as a
regional care facility. Inclusion criteria were based on English prociency and
judgment of the supervising physician about whether patients were well enough to be
approached about the study, excluding 30 clinic patients. Sixty patient and caregiver
pairs were invited to participate and surveys were returned by 52 pairs. Structured
surveys were completed at the time of a scheduled out-patient hospital visit or in the
participants own home and returned by mail to the ALS clinic. The survey took
Psychology, Health & Medicine 459
approximately 45 min to complete; patients and caregivers completed it on their own
unless ALS-related impairment prevented patients from writing, in which case they
completed the survey with the assistance of someone other than the primary caregiver.
Measures
Patient physical symptoms were assessed with the ALS Functional Rating Scale
(ALSFRS; The ALS CNTF Treatment Study Phase III Study Group, 1996).
Patients rated ten items associated with bulbar, limb, and respiratory function, each
on a ve-point scale, recoded such that low values indicated fewer symptoms and
higher values indicated greater symptom severity (0 normal functioning, no symp-
toms to 4 no functioning or most severe symptoms). An overall score of 0 indicated
best functioning and 40 indicated poorest functioning (Cronbachs a 0.87).
Patient mental distress was measured with patient ratings of a modied version of
the Center for Epidemiologic Studies Depression Scale (CES-D; Radlo, 1977). The
CES-D is a 20-item scale that assesses mood, somatic issues, and social functioning
with a higher score indicating greater impairment. Because items in this scale related
to somatic issues are confounded by ALS symptom severity, for the present study,
three items closely related to ALS symptoms (I felt that everything I did was an
eort, I talked less than usual, and I could not get going) were removed from
the CES-D, leaving 17 items. This method of removing somatic items is consistent
with previous research with ALS patients (Ganzini, Johnston, & Homan, 1999).
The range of possible scores on the CES-D in this study was 051, with a score of
13.6 being an approximate equivalent to the commonly used score of 16 or above for
risk of depression (Cronbachs a 0.89).
Patient support was measured with three items from the social support subscale
of the quality of relationships inventory (QRI; Pierce, Sarason, & Sarason, 1991),
which assesses dierent facets of current relationship quality. Caregivers rated the
extent to which they perceived the care recipient as supportive (e.g. To what extent
can you turn to this person for advice about problems?) on a ve-point scale
(1 very slightly or not at all to 5 very much) (a 0.88).
Caregiver aect was measured with the positive and negative aect schedule
(PANAS; Watson, Clark, & Tellegen, 1998). Six items assessed positive aect (e.g.
enthusiastic, inspired; a 0.87) and six items assessed negative aect (e.g. scared,
irritable; a 0.85). Caregivers rated the degree to which they felt each emotion
during the past few days on a ve-point scale from 1 (very slightly) to 5 (very much).
Caregiver benet nding was assessed with an open-ended question Sometimes
people who have a serious illness or disability nd some positive aspect in the
experience. For example, some people feel they learn something about themselves or
others. Have you found anything positive in this experience, in particular, as a
caregiver? (Davis et al., 1998). The authors independently coded the open-ended
responses to this question in terms of whether or not they indicated benet nding
(yes 1, no 0). Inter-rater reliability was high (k 0.96) (Mock & Boerner, 2010).
Analysis plan
Analyses began with the calculation of basic descriptive and bivariate associations of
main study variables. To examine the association of patient suering components
and patient support with caregiver aect, linear regression analyses were conducted.
460 K. Boerner and S.E. Mock
Due to the limited sample size, the regression models were kept as parsimonious as
possible while still maintaining the focus on the primary variables of interest. The
rst regression model included control variables of caregiver age, gender, the patient
suering components of patient symptoms and distress, as well as patient support.
Next, a patients symptoms by distress interaction was added to test the possibility
that multiple suering components may have a compounded impact on caregiver
mood, followed by patient symptoms by patient support and patient distress by
patient support interactions to test the potential role of the nature of the patient
caregiver relationship in caregiver response to suering. The same pattern of models
was used to test the associations of patient suering components and patient support
with likelihood of caregiver benet nding in two logistic regression analyses. To
generate the input required to interpret signicant interactions, all continuous
variables in the regression models were mean-centered.
Results
Descriptive information for patients and caregiver characteristics is displayed in
Table 1. On average it had been 44 months since patients received their diagnoses
(SD 49.75). Nearly all patients (92%) showed some degree of impairment; 15% of
the patients had lost speech or needed to use some non-vocal communication, 16%
could not write, 35% needed some or substantial help with dressing and personal
hygiene, and 65% either could not climb stairs or required assistance. Forty-one of
the caregiver were married to the patient they were caring for, eight were either a
patients parent or adult child, two caregivers were nursing aides, and the exact
nature of one relationship is unknown.
Bivariate associations between major study variables are depicted in Table 2.
Greater patient support was signicantly associated with higher levels of positive
caregiver aect. Greater patient distress was signicantly related with higher levels of
negative caregiver aect. Negative and positive caregiver aect were moderately and
signicantly associated.
Table 1. Means and frequencies for demographics, patient suering components, and patient
support by patient and caregiver.
Patient Caregiver
Variable M/Percent SD M/Percent SD
Demographics
Age 58.00 12.59 55.94 12.70
Female
a
37.30 71.20
Patient suering
Patient symptoms 13.69 8.26
Patient distress 12.79 9.56
Moderator
Patient support 3.80 1.04
Caregiver outcomes
Positive aect 3.20 0.93
Negative aect 2.04 0.89
Benet nding
a
63.46
Note:
a
Percentage.
Psychology, Health & Medicine 461
Table 3 displays results from linear regression models. In the rst pair of models,
there was only one signicant main eect for patient support. Greater patient
support was signicantly associated with higher levels of positive caregiver aect
(Model 1). None of the interaction terms was statistically signicant (Model 2). The
second pair of models also showed only one signicant main eect, but in this case
the inuential variable was patient distress. Greater patient distress was associated
with higher levels of negative caregiver aect (Model 1). Again, none of the
interaction terms showed a signicant eect (Model 2).
Table 4 displays results from the logistic regression models. Greater patient
symptom severity and greater patient support were signicantly associated with a
Table 2. Correlation of patient and caregiver demographics, patient suering components,
and patient support with caregiver outcomes.
Caregiver outcomes
Study variables Positive aect Negative aect Benet nding
1. Patient age 0.03 7.33* 70.08
2. Caregiver age 0.03 7.23 70.11
3. Patient female 70.03 0.15 0.16
4. Caregiver female 70.04 70.11 70.22
5. Patient symptoms 70.05 0.23 0.26{
6. Patient distress 70.26{ 0.59*** 0.14
7. Patient support 0.37** 70.18 0.16
8. Caregiver positive aect 70.35* 0.27{
9. Caregiver negative aect 70.35* 70.16
10. Caregiver benet nding 0.27{ 70.16
Notes: {p 5 0.10, *p 5 0.05, **p 5 0.01, ***p 5 0.001.
Table 3. Standardized regression coecients for association of positive and negative
caregiver aect with demographics, patient suering components, and patient support.
Caregiver outcome variables
Positive aect Negative aect
Model 1 Model 2 Model 1 Model 2
Predictor variables Beta Beta Beta Beta
Demographics and suering
Caregiver age 70.15 70.14 70.01 70.02
Caregiver gender 70.03 70.05 70.08 70.05
Patient symptoms 0.11 0.12 0.17 0.16
Patient distress 70.29 70.28 0.63*** 0.63***
Patient support 0.42* 0.40* 0.08 0.10
Interactions
Symptoms6distress 70.11 0.18
Symptoms6support 0.02 0.02
Distress6support 70.10 0.11
R
2
Change 0.24 0.01 0.44 0.02
F value (for change) F(5,41) 2.61* F(3, 38) 0.15 F(5,41) 6.50*** F(3, 38) 0.49
Notes: *p 5 0.05, ***p 5 0.001.
462 K. Boerner and S.E. Mock
greater likelihood of caregiver benet nding (Model 1). In addition, Model 2
showed a signicant interaction of patient symptoms by patient support of
caregiver. Probabilities of caregiver benet nding at high and low levels of
patient symptoms and patient support were calculated to help interpret the nature
of this interaction (Jaccard, 2001; see Figure 1). At high levels of the moderator
(patient support), caregivers were more than twice as likely to report benet
nding when patient symptom severity was high (p 1.00) compared to when
patients symptom severity was low (p 0.37). At low levels of patient support,
caregivers were almost ten times as likely to report benet nding when the
patient symptom severity was high (p 0.88) compared to low symptom severity
(p 0.01).
Table 4. Logistic regression coecients for association of caregiver benet nding with
demographics, patient suering components, and patient support.
Model 1 Model 2
Predictor variables B SE Wald B SE Wald
Constant 1.73 1.06 2.66 0.71 1.26 0.32
Demographics and suering
Caregiver age 70.04 0.03 1.39 70.08 0.05 2.45
Caregiver gender 70.90 0.76 1.42 70.37 0.89 0.17
Patient symptoms 0.12* 0.05 5.85 0.23** 0.09 6.90
Patient distress 70.09 0.05 3.49 70.19* 0.09 4.72
Patient support 0.83* 0.40 4.32 1.12* 0.50 4.99
Interactions
Symptoms 6 distress 0.00 0.01 0.01
Symptoms 6 support 0.23* 0.11 4.11
Distress 6 support 0.17 0.10 2.76
Nagelkerke R
2
0.38 0.49
Notes: *p 5 0.05, **p 50.01.
Figure 1. Association of symptom severity with probability of reporting benet nding
moderated by patient support.
Psychology, Health & Medicine 463
Discussion
This study of ALS patients and their caregivers explored the associations of two
components of patient suering, patient symptoms and distress, as well as the
patients support for the caregiver, with three distinct caregiver indicators of
caregiver adaptation, positive and negative aect, as well as nding benet in dealing
with the illness. Although we found evidence for the notion that both components of
patient suering and patient support of caregiver play an important role for
caregiver outcomes, our ndings indicated a unique predictive pattern for each of the
three outcomes. Patient support was the only indicator with a signicant main eect
for positive aect, showing that caregivers who perceived the care recipient as
supportive of them experienced more positive mood. This suggests that relative to
the other variables, including caregiver characteristics and patient suering, patient
support was consistently important for caregivers positive aect. In contrast, patient
distress was the strongest and only signicant predictor for negative aect, which is
in keeping with previous research in the context of ALS as well as other chronic
illnesses. The nding for the impact of patient support was partially consistent with
prior work (Rabkin et al., 2009), in the sense that we found an important role of this
variable for only one aspect of caregiver mood (positive but not negative aect). It is
possible that this partial lack of convergence is related to methodological aspects
such as the use of dierent measures to represent the overlapping constructs.
However, if that is the case, it is even more remarkable that both studies
demonstrated a strong association between patient support and caregiver mood,
even if this association was not necessarily found for the same facet of mood.
Patient symptom severity was not associated with either of the aect variables.
Although this nding is consistent with previously reported evidence that witnessing
the physical suering of the patient may not be primarily what aects caregiver
mood (e.g. Gauthier et al., 2007; Olsson et al., 2010), the literature remains mixed on
this issue, and because of the variety of symptoms or functioning indicators used
across studies (e.g. neurobehavioral versus physical symptoms), it is not unlikely that
at least some of the inconsistencies in ndings may be due to methodological
dierences. However, we extended previous research by establishing that the lack of
impact of patient symptoms, as measured with the ALSFRS, remains when the
combined eects of symptoms and distress or support are considered.
As predicted based on the heuristic framework advanced by Schulz et al. (2007),
we did nd positive main eects for both patient symptoms and support on benet
nding, as well as a signicant interaction of patient symptoms by support associated
with benet nding. These ndings provide support for the notion that more severe
physical suering may trigger positive thought around the illness and care situation,
and that perceiving the patient as supportive is additionally helpful in this respect.
The interaction eect further suggests that caregivers who perceive the care recipient
as supportive are able to engage in benet nding regardless of the intensity of
physical suering experienced by the patient. In contrast, caregivers who perceive the
care recipient as unsupportive seem to only nd benet in the situation if the patient
experiences severe physical suering. Finally, caregiver benet nding was prac-
tically nonexistent when the patient was perceived as unsupportive and seemed to
experience a relatively mild degree of physical suering. This suggests that feelings of
compassion or related positive feelings about the patient, illness, or care situation are
dicult to maintain, when one is confronted with an unsupportive patient whose
464 K. Boerner and S.E. Mock
level of suering is not at its worst. In this scenario, the lack of support from the
patient is probably harder for the caregiver to tolerate.
Several limitations of the present study should be kept in mind when interpreting
the reported ndings. Due to the limited sample size, we had to keep our regression
models parsimonious and therefore, could not include a wider range or caregiver or
patient characteristics that may have explained additional variance in the outcomes.
The cross-sectional nature of our study precludes causal claims. We did not have
direct measures for all the key components of the heuristic framework (e.g.
existential suering; Schulz et al., 2007). However, recent work demonstrated
signicant associations of ALS patients existential well-being with caregiver burden
and quality of life, suggesting that all three suering components dened in the
model play a role in the prediction of caregiver outcomes. Finally, some of the
associations found may be unique to the context of ALS, limiting generalizability to
other serious, progressive health conditions. However, the convergence of our
ndings with predictions derived from the Schulz model certainly suggests that
similar patterns could emerge in other caregiving contexts as well. Importantly and
despite the noted limitations of the present study, our ndings contribute to the
literature by providing further support to the observation that, due to the high
concordance in caregiver and patient distress, attention to caregiver needs is likely to
not only benet the caregiver but also the patient (Olsson, et al., 2010; Rabkin et al.,
2000). In addition, our ndings underscore the idea that patients can actively
contribute to the well-being of their caregivers, and that encouraging eorts in this
direction, or identifying challenges in support exchanges between caregivers and
patients should be considered as an important element of support interventions for
both patients and their caregivers.
Acknowledgements
This research was supported by grants to the second author from the College of Human
Ecology, Cornell University and the Cornell Applied Gerontology Research Institute, Dr.
Karl Pillemer, and Dr. Elaine Wethington, Co-Directors, an Edward R. Roybal Center for
Translational Research, funded by the National Institute on Aging (5 P50 AG011711-10). We
are grateful to the study participants who shared their experiences, and the supervising
physician and clinic coordinator for their assistance with this project. We would also like to
thank Verena Cimarolli and Brent Gibson for their helpful comments on earlier versions of
this manuscript.
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