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Intra-Family Stressors Among Adult Siblings Sharing Caregiving for Parents

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AimThe aim of this study was to describe a Neuman Systems Model-guided study of perceptions of family stressors experienced by adult siblings who share caregiving for their parents and the influence of these stressors on adult siblings' relationships. Background The task of providing informal care for disabled parents is often shared by adult siblings. Family stressors experienced as part of caregiving may affect the sibling relationship. DesignA mixed-method study design was used. Methods Data were collected during 2013-2014 from 84 adult sibling caregivers. Seventy-two caregivers provided quantitative data for the Lifespan Sibling Relationship Scale and the Zarit Burden Scale and 79 provided qualitative data for the open-ended question. ResultsAdult siblings experienced mild-to-moderate levels of burden from family stressors when they share parental caregiving. The amount of burden from intra-family stressors was negatively related to the adult sibling relationship. Beneficial and noxious stressors were evident in the participants' responses to an open-ended question. Conclusion The health of the parents affected the lives of adult siblings in both negative and positive ways. Although the majority of the adult siblings expressed a willingness to care for their parent(s) in an attempt to reciprocate the care, they had received from them, challenges emerged from dealing with family stressors.
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ORIGINAL RESEARCH: EMPIRICAL RESEARCH – MIXED
METHODS
Intra-family stressors among adult siblings sharing caregiving for
parents
Pamela C. Ngangana, Bertha L. Davis, Dorothy P. Burns, Zina T. McGee & Arlene J. Montgomery
Accepted for publication 2 June 2016
Correspondence to P.C. Ngangana:
e-mail: pamela.ngangana@gmail.com
Pamela C. Ngangana PhD RN CNS CNE
Adjunct Faculty/Faculty/Adjunct Nursing
Faculty
Department of Nursing, Kent State
University, Twinsburg, Ohio, USA
Department of Nursing, Breckinridge School
of Nursing, Warrensville, Ohio, USA and
Cuyahoga Community College, Cleveland,
Ohio, USA
Bertha L. Davis PhD RN ANEF FAAN
Professor
Department of Nursing, Hampton
University, Virginia, USA
Dorothy P. Burns PhD RN
Associate Professor
Department of Nursing, Hampton
University, Virginia, USA
Zina T. McGee PhD
Professor
Department of Sociology, Hampton
University, Virginia, USA
Arlene J. Montgomery PhD RN
Professor
Department of Nursing, Hampton
University, Virginia, USA
NGANGANA P.C., DAVIS B.L., BURNS D.P., MCGEE Z.T. & MONTGOMERY
A.J. (2016) Intra-family stressors among adult siblings sharing caregiving for par-
ents. Journal of Advanced Nursing 72(12), 31693181. doi: 10.1111/jan.13065
Abstract
Aim. The aim of this study was to describe a Neuman Systems Modelguided
study of perceptions of family stressors experienced by adult siblings who share
caregiving for their parents and the influence of these stressors on adult siblings’
relationships.
Background. The task of providing informal care for disabled parents is often
shared by adult siblings. Family stressors experienced as part of caregiving may
affect the sibling relationship.
Design. A mixed-method study design was used.
Methods. Data were collected during 20132014 from 84 adult sibling
caregivers. Seventy-two caregivers provided quantitative data for the Lifespan
Sibling Relationship Scale and the Zarit Burden Scale and 79 provided qualitative
data for the open-ended question.
Results. Adult siblings experienced mild-to-moderate levels of burden from family
stressors when they share parental caregiving. The amount of burden from intra-
family stressors was negatively related to the adult sibling relationship. Beneficial
and noxious stressors were evident in the participants’ responses to an open-
ended question.
Conclusion. The health of the parents affected the lives of adult siblings in
both negative and positive ways. Although the majority of the adult siblings
expressed a willingness to care for their parent(s) in an attempt to reciprocate
the care, they had received from them, challenges emerged from dealing with
family stressors.
Keywords: adult siblings, caregivers, family stressors, informal care, mixed-
method, Neuman Systems Model, nursing, parents, relationship
©2016 John Wiley & Sons Ltd 3169
Introduction
The world population is rapidly becoming older. It is
reported that ‘between 2000 and 2050, the proportion of
the world’s population over 60 years will double from
11-22% and the number of people aged 80 years and older
is expected to quadruple to 395 million’ (World Health
Organization (WHO) 2014, p. 1). Inasmuch as the antici-
pated rise in the number of older adults will lead to an
expansion of demand for long-term health care for ageing
populations, it is essential that governments, policy makers,
planners and researchers of all nations address the issue of
ageing (Powell 2014). The need for provision of long-term
health care has led to a rise in the cost of health care, plac-
ing strain on federal, state and local governments (Kaye
et al. 2010). Consequently, majority (80%) of older adults
receive informal caregiving at home in the community, not
institutions (‘Rising Demand for Long-Term Services and
supports for Elderly People’ n.d.). Remaining in their homes
allows older adults to recuperate or die in familiar, com-
fortable surroundings, at considerably less cost than if they
had remained in the hospital (Kaye et al. 2010) and fosters
maintenance of social networks and quality of life (H
ebert
et al. 2001). However, when older adults remain at home,
their adult children often assist in their care because of eco-
nomic social or psychological reasons (Russo 2010, Wuest
et al. 2010, Stuifbergen & Van Delden 2011).
Although several researchers have studied caregiver bur-
den, many have focused on heterogeneous groups of care-
givers. However, it is important for researchers to also
examine homogeneous groups, as responses to caregiving
may differ between the two groups. Although other
researchers have studied the relationship between various
care recipients and caregivers, or caregivers of recipients
with specific diseases, few studies address effects of parental
caregiving on the adult sibling relationship. Furthermore,
many researchers have studied intrapersonal, interpersonal
and extrapersonal stressors from the perspective of the
Neuman Systems Model (NSM) experienced by individual
client systems, although no research about burden of family
stressors was located. Little is known about factors that
promote or impede adult sibling relationships while sharing
parental caregiving responsibilities. Inasmuch as parental
caregiving is associated with potential negative physical and
psychological outcomes (Perrig-Chiello & Hutchison 2010),
the types of stressors experienced by adult siblings parental
caregivers warrant study.
Background
Even though other nursing models were considered to guide
this study (King’s Conceptual System and Roy’s Adaptation
Model), the NSM was chosen because its concepts are more
congruent with research about stressors and the family as a
client system (Reed 1993, Fawcett & Gigliotti 2001). In the
NSM, client systems are individuals, families, groups, com-
munities or social issues (Neuman & Fawcett 2011). Each
client system consists of five interacting variables: (1) physi-
ological (bodily structure and internal function); (2) psycho-
logical (mental processes and internal function); (3)
sociocultural (combined effects of social-cultural conditions
and influences); (4) developmental (age-related development
processes and activities); and (5) spiritual (spiritual beliefs
and influences). The basic structure is metaphorically sur-
rounded by several circles, including the flexible line of
defence (FLD) (protective buffer to prevent or impede stres-
sor from invading the system), the normal line of defence
(NLD) (the wellness level of the client system) and lines of
resistance (LOR) (protects against stressors) (Fawcett &
DeSanto-Madeya 2013). The FLD, NDL and LOR protect
the client from the impact of stressors (‘tension-producing
stimuli or forces occurring within the internal and external
environment of the client system’) (Neuman & Fawcett
Why is the research or review needed?
The well-being of older adults and family stability may be
at risk because of the impact of family stressors that
emerge while adult siblings share caregiving for parents.
• Specific family stressors need to be identified to promote
maintenance of the supportive role that adult siblings play
in one another’s lives.
What are the key findings?
• Adult children experience mild-to-moderate burden when
they share caregiving for their parents with their siblings.
• Amount of burden of family stressors is negatively corre-
lated with the adult sibling relationship.
• Adult siblings who share care of their parents experience
both beneficial and noxious stressors.
How should findings be used to influence policy/
practice/research/education?
• Beneficial and noxious stressors identified in this study
should be considered when counselling adult siblings who
anticipate serving as parental caregivers.
Issues surrounding informal family caregiving found in this
study should inform politicians and other stakeholders as
they develop social policies that provide support for infor-
mal adult sibling parental caregivers.
3170 ©2016 John Wiley & Sons Ltd
P. C. Ngangana et al.
2011, p. 22). Stressors are intrapersonal (internal environ-
mental forces occurring within the boundaries of client sys-
tem), interpersonal (external environmental forces that
occur outside the boundaries of the client system at proxi-
mal range) and extrapersonal (external environmental
forces that occur outside the boundaries of the client system
at a distal range) (Neuman & Fawcett 2011).
Few, if any, nursing conceptual model-guided studies
include all concepts and propositions of a particular concep-
tual model, as conceptual models are comprehensive, whereas
most empirical research focuses on specific phenomena (Faw-
cett & Garity 2009, McEwen & Wills 2011). Accordingly,
four NSM concepts client system, stressors, sociocultural
variable and developmental variables guided this study.
The conceptual-theoretical-empirical (CTE) structure for
the study is illustrated in Figure 1. For the purposes of this
study, the client system was represented by family, includ-
ing adult siblings and their parents. In this study, parent is
defined as a recipient of care and is the biological parent,
parent-in-law or the adopted parent of two or more adult
children. An adult sibling is defined as a sibling who is bio-
logical, adopted or a sibling-in-law who has one or more
sisters or brothers and who is a provider of care to a par-
ent/s. Stressors were represented by family stressors, which
are defined as forces derived from within the family bound-
aries that have the potential to disrupt family stability, such
as illness of a family member (Neuman & Fawcett 2011).
The burden of family stressors, defined as the extent to
which a caregiver perceives emotional and physical health,
social life and financial consequences that impair the ability
to provide care (Zarit et al. 1986), was measured by the
Zarit Burden Scale (Zarit et al. 1987). The sociocultural
variable was represented by the sibling relationship, defined
as the description of the characteristics of interaction
between/among adult siblings (Neuman & Fawcett 2011)
and measured by the Lifespan Sibling Relationship Scale
(LSRS; Riggio 2000). The developmental variables were
represented by study respondents’ demographic data, as
measured by items on the researcher-developed Demo-
graphic Data Sheet and by selected items from the LSRS.
Many adult siblings provide care (‘Selected Caregiver
Statistics’ n.d.); indeed, taking care of ageing parents has
become one tasks performed by middle-aged adults (Nand-
wana & Katoch 2007). This is especially true in Asia and
African countries; it is primarily the adult children who
provide most of the care. In countries such as China, Thai-
land and India, moving older parents into institutions is
considered condemned because it is believed that caring for
older people is the responsibility of the family (Cheng &
Chan 2006, Knodel et al. 2013, Brinda et al. 2014).
Caregiving shifts from the spouse to the adult children as
advancing in age makes it impossible for older people to
care for their partners (Brodsky et al. 2003). According to
Colombo et al. (2011) across 16 European countries sur-
veyed, an average of 361% of caregivers provided care for
parents. In the United States, 42% of caregivers care for a
parent and an additional 7% care for a parent-in-law
(National Alliance for Caregiving and AARP 2015). Caring
for parents may be challenging because adult siblings have
competing responsibilities such as jobs, childrearing and
having a spouse (Tolkacheva et al. 2010). The amount of
help needed may be so great a burden that the children’s
normal family functioning and morale are affected (Cicirelli
1981). Adult siblings experience a great deal of burden
associated with caregiving stressors and problems with fam-
ily members caused by the caregiving situation than spouse
(Perrig-Chiello & Hutchison 2010).
Parent care may bring some sibling groups closer together
because participants have greater contact and cooperation
than before the parents’ need for care. However, parental
care may also result in conflicts among some siblings and add
stress to their relationships (Roff et al. 2007). Lashewicz and
Keating (2009) found that issues of equivalence are renegoti-
ated when adult siblings are tasked with the responsibility of
sharing care for parents and assigning parent’s assets because
siblings become dissatisfied when they perceived that other
siblings dominate decisions pertaining to parent care and
assets. They want to share care responsibilities and have
equal opportunity for influence in matters of parent care and
assets. Miller et al. (2008) found that at times a sibling may
prevent other siblings from offering help when they assume
that they are the only ones competent to provide care for par-
ents. Siblings who played the ‘competence role’ were often
found to feel stressed from the care.
Leinonen (2011) found that either the relationship
between adult siblings and parent(s) or the relationship
among the siblings influenced the division of care responsi-
bilities. They also found that a close relationship with sib-
ling(s) and sharing the care responsibilities was valuable for
managing the inter-generational ambivalence that the chil-
dren faced when they cared for their parents. Adult siblings
experiencing disagreements experience considerable burden,
and the impact of negative relationships in the informal
caregiving network has a greater impact on burden than the
impact of positive relationship (Tolkacheva et al. 2011).
Roff et al. (2007) found that some highly educated sib-
lings who resided distant geographically from parents com-
plained that the siblings who lived proximally and who
provided the majority of the daily care for the parents were
inadequate or deficient in their caregiving. These distant
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JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH MIXED METHODS Intra-family stressors among adult siblings
siblings also reported that they were irritated with the
hometown sibling’s behaviour but at the same time felt
frustrated that they could not do more, given their job and
family responsibilities. The researchers also found that sib-
ling groups were unlikely to have any discussions about
potential care plans or their parents’ wishes.
Checkovich and Stern (2002) found that adult siblings
influence both the amount and the method of the caregiving
provisions of their siblings. They found that provision of
parental long-term care by adult siblings has the potential
to cause both inter-sibling conflicts and emotional support.
Although many researchers have studied caregiver burden,
there is a paucity of studies addressing the effects of care-
giving on the adult sibling relationship. Little is known
about factors that promote or impede adult sibling relation-
ships while sharing parental caregiving responsibilities.
Therefore, this study was designed to extend knowledge
about caregiving by focusing on the experience of burden
of intra-family stressors of adult siblings sharing parental
caregiving and its impact on their relationships.
The study
Aim
The purpose of this NSM-guided study was to describe per-
ceptions of family stressors experienced by adult siblings
who share caregiving responsibilities for their parents and
the influence of the stressors on the adult siblings’ relation-
ships. This mixed-method study was designed to answer
three research questions and test two hypotheses.
Quantitative Research Questions
1What is the extent of the overall burden of family stres-
sors identified by adult siblings who share caregiving for
their parents?
2What is the relation between the overall burden of family
stressors identified by adult siblings who share caregiving
for their parents and the overall adult siblings’ relation-
ship?
Qualitative Research Question
3How would you describe your experience while sharing
caregiving for your parent with your sibling?
Hypotheses
H
1
: The extent of the overall burden of family stressors identified
by adult siblings who share caregiving for their parents will be
high. This hypothesis was based on earlier reports that informal
family caregivers usually experience high burden (Scharlach et al.
2006, Perrig-Chiello & Hutchison 2010).
Conceptual-theoretical-empirical structure
Neuman systems model
Client system Developmental variables Stressors Sociocultural variable
Adult siblings Sibling and parent Family Adult sibling relationship
Parents Demographics Stressors
Demographic Demographic ZBI LSRS
data form data form
Open-ended questions
Legend
ZBI = Zarit Burden Interview
LSRS = Lifespan Sibling Relationship
Scale
Figure 1 Conceptual-theoretical-empirical structure for the study of intra-family stressors among siblings sharing caregiving for parents
(investigator developed).
3172 ©2016 John Wiley & Sons Ltd
P. C. Ngangana et al.
H
2
: The greater the burden of family stressors, the poorer the adult
sibling relationship. This hypothesis was based on research by
Checkovich and Stern (2002) and Tolkacheva et al. (2011), who
found that negative encounters between family caregivers have
effects on their relationship.
Design
This was a concurrent mixed-method (QUAN +qual)
descriptive correlational design. For this design, both quan-
titative and qualitative components are implemented con-
currently before being mixed in the interpretation stage
(Leech & Onwuegbuzie 2011), with more emphasis placed
on the quantitative component and less emphasis on the
qualitative component. Descriptive research is a mode of
inquiry used to provide description or characteristics of the
features of a situation or a phenomenon. Correlational
designs are used to test explanatory middle-range theories
by providing answers to questions about relations between
concepts (Fawcett & Garity 2009). Mixed method was used
for significant enhancement, a design and data analysis
technique that maximizes the interpretation of the findings
of a study (Onwuegbuzie & Leech 2006).
Sample/participants
Purposive, self-selecting and snowball sampling were used
to recruit respondents. Letters and flyers distributed to
churches, adult senior day care centres, caregiver support
groups, barbershops and beauty salons to recruit respon-
dents. People interested in participating in the study con-
tacted the researcher by e-mail or telephone. Only adult
siblings who were sharing caregiving for their non-institu-
tionalized parents experiencing a chronic illness and/or a
disability were included in this study. Members of all racial
groups could be included. Adult sibling caregivers without
siblings and those whose parents lived permanently in insti-
tutions (i.e. nursing homes) were excluded from the study.
The initial sample consisted of 84 multi-racial adult sibling
caregivers of non-institutionalized parents who were experi-
encing chronic illness and/or a disability. Twelve respon-
dents were excluded from the quantitative study either
because they did not meet the criteria (n=2) or because of
incomplete data (n=10). A total of 84 participants were
recruited for the study; 72 participants provided complete
quantitative data and 79 participants responded to the
open-ended question. Power analysis using G*power 3.1
(Faul et al. 2009)indicated that 67 participants were
needed for alpha at 005, power at 080 and effect size of
030 for one-tailed Pearson product moment coefficients of
correlation.
Data collection
Quantitative and qualitative data were collected concur-
rently during 2013 and 2014.
Zarit Burden Interview
The Zarit Burden Interview (ZBI) is composed of 22 items
that assess the degree to which caregivers perceive their
responsibilities as having an adverse effect on their health,
personal and social life, finances and emotional well-being
(Zarit et al. 1987). ZBI has been used to measure stressors
associated with caregiving (Zarit et al. 1987). The total ZBI
score consist of scoring for five domains burden in relation-
ship (six items), emotional well-being (seven items), social
and family life (four items), finances (one item) and loss of
control over one’s life (four items) were used to determine
the amount of family stressor burden. The items are scored
from 0 (never)-4 (nearly always), with higher scores indicat-
ing higher levels of burden. Total scores range from 0-88.
Interpretation of the category of level of burden was based
on the ZBI means as well as number of items endorsed and
the mean score per item endorsed, as suggested by Zarit (per-
sonal communication, 13 July 2014). In addition, cut scores
identified by Brodaty et al. (2014, p. 758) were considered;
they maintained that ‘a score between 21-40 was used to
determine mild-to-moderate burden in caregivers and a score
of 41 or greater identified moderate to severe burden’.
Lifespan Sibling Relationship Scale
The Lifespan Sibling Relationship Scale (LSRS) was used to
measure attitudes towards the sibling relationship adult-
hood. The LSRS consists of 48 items divided into six sub-
scales of eight items that measure sibling relationship in
both childhood and adulthood. Child Affect (CA) and
Adult Affect (AA) measure feelings of love, affection, plea-
sure, etc. about the sibling. Child Cognition (CC) and Adult
Cognition measure cognitions or beliefs about the sibling
and the sibling relationship (closeness and importance of
the relationship). Child Behaviour (CB) and Adult Beha-
viour (AB) measure the degree of interactions through beha-
viours (phone call, visit and sharing secret) with and
towards the sibling (Riggio 2000, Jeong et al. 2013).
Items are rated on a 5-point Likert scale, indicating the
degree to which they agree or disagree with the statement
about their sibling relationship (1/5 =strongly disagree/
strongly agree; 3 =neither agree nor disagree; 2/4 =dis-
agree/agree). Eight items 7, 8, 12, 17, 22, 30, 39 and 48
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JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH MIXED METHODS Intra-family stressors among adult siblings
are reversed scored (1 =5, 2 =4, 3 =3, 4 =2, 5 =1).
The total LSRS score is the sum of the item scores. Possible
LSRS total scores range from a low of 44 to a high of 240.
Total scores between 192-240 are categorized as a positive
relationship; scores between 97-191 as a neutral relation-
ship; and scores between 96-44 as a negative relationship
(H. Riggio, personal communication, 17 March 2014). Sub-
scale scores range from a low of 1 to a high of 40. Internal
consistency reliability ranged from 086-092 for all items,
with subscale intercorrelations for Child scores ranging
from 068-087, from 076-087 for Adult scores and from
040-053 for Child/Adult scores (Riggio 2006).
Interview schedule
An investigator-developed interview schedule was used to
ask adult siblings, How would you describe your experi-
ence while sharing caregiving for your parent with your
sibling?
The interview schedule was based on consultation with
an expert researcher and review of caregiver literature. The
interview schedule was initially sent to 20 respondents,
who were instructed to call the researcher if there were any
concerns. After the 20 respondents returned the completed
interview schedule without any calls about concerns or
questions, the same interview schedule was distributed to
other respondents as they were recruited.
The ZBI, LSRS and the interview schedule were mailed
to each respondent. Respondents answered the questions in
writing and returned the forms to the researcher in a self-
addressed stamped envelope.
Ethical considerations
A university institutional review board approved the study.
Consent forms were mailed to respondents along with the
data collection forms. Respondents’ confidentiality was
maintained by separating the signed informed consent
forms from the data collection forms when returned.
Data analysis
Quantitative and qualitative data were analysed separately
and then compared and contrasted in the discussion (Klas-
sen et al. 2012). SPSS 20.0 (IBM, Armonk, NY, USA) was
used to analyse the quantitative data. Descriptive statistics
were used to summarize the demographic data and the ZBI
and LSRS data. Hypothesis
1
was tested using total ZBI
scores. The scores were categorized as positive, neutral and
negative, using the cut scores provided by H. Riggio (per-
sonal communication, 17 March 2014).
Hypothesis
2
was tested by Pearson’s product moment
coefficient of correlation to examine the relation between
the ZBI total score and the total LSRS total score.
Open-ended question
Qualitative data were analysed using content analysis to
identify common themes and similarities and differences.
The goal of content analysis is to create a comprehensive
‘word picture’ that is as multifaceted and complicated as
life in today’s world (Kearney 2007, as cited in Fawcett &
Garity 2009, p. 227). Responses to the interview question
were read and similar words and phrases were highlighted
and grouped into categories. A tally of how many times
each theme appeared was calculated. In the context of the
NSM, stressors may be perceived as beneficial or noxious.
Therefore, in this study, family stressors identified by the
adult siblings were classified according to the themes identi-
fied, with positive stressors considered a beneficial stressor
and negative stressors considered a noxious stressor.
Validity and reliability/rigour
The ZBI and LSRS have been widely used in research
reports of which indicate adequate reliability and validity
estimates (H
ebert et al. 2000, Riggio 2000, B
edard et al.
2001, Bachner & O’Rourke 2007, Jeong et al. 2013). Bach-
ner and O’Rourke (2007) indicate that the ZBI is reliable
for caregivers of patients with physical illnesses. The 22-
item format of the ZBI was observed to be the most reliable
format compared with other versions, and therefore, this
version was recommended for use in research (Bachner &
O’Rourke 2007). Cronbach’s alpha internal consistency
reliability is estimated at 092 (H
ebert et al. 2001). ZBI
validity for a global rating of burden is estimated at 066-
074 (B
edard et al. 2001). Internal consistency reliability
estimates for the LSRS range from 086-092; intercorrela-
tions for Child scores ranged from 068-087, from 076-
087 for Adult scores and from 040-053 for Child/Adult
scores (Riggio 2006). Testretest reliability (1 month apart)
is 091 for the total LSRs score (Riggio 2000). LSRS valida-
tion indicated a coherent factor structure and convergent
and discriminant validity (Riggio 2006).
Lifespan Sibling Relationship Scale validation indicated a
coherent factor structure and convergent and discriminant
validity (Riggio 2006). Internal consistency reliability for
the ZBI (total score and domains) and LSRS (total score
and subscales) for the study sample was calculated using
Cronbach’s alpha (Table 1).
Rigour of the qualitative data was estimates by disserta-
tion committee members and two other nurse educators
3174 ©2016 John Wiley & Sons Ltd
P. C. Ngangana et al.
with qualitative research experience reviews of the themes
extracted from open-ended question responses. Once con-
sensus was reached between reviewers and researcher, any
multiple themes addressing the same issues were collapsed.
Findings
Parents were mothers or fathers of the adult sibling care-
giver. Sibling caregivers were sons or daughters. Respon-
dents’ ages ranged from 26-74 years (mean =5290 SD
1132). Approximately two thirds (669%, n=48) were
between 50 and 74 years old. The majority of the respon-
dents were women (833%, n=60) and Black (79%,
n=57). Most respondents had some college (278%;
n=20) or were college graduates (250%, n=18). The
majority of respondents (389%, n=28) had more than an
undergraduate college degree. The vast majority were
employed (817%, n=58). More than one-half of the
respondents (542%, n=39) had been giving care for 6 or
more years and more than one third (361%, n=26) had
given care for 15 years. Only seven (97%, n=7) respon-
dents had given care for less than 1 year (Table 2).
Hypothesis
1
The mean ZBI overall burden score was 3289 (SD 1529,
range =10-63). On average, respondents indicated a mild-
to-moderate level of overall of burden for caring for their
parents. Therefore, Hypothesis
1
was rejected (Table 3).
Hypothesis
2
Hypothesis
2
was supported. Hypothesis
2
was tested with
the data-generating sample using the Pearson’s product
moment coefficient of correlation to examine the relation
between the ZBI total score (burden) and the total LSRS
total score (adult sibling relationship). The ZBI overall bur-
den score was negatively correlated with the total LSRS
score, and the correlation was relatively moderate in
strength (r=0286, P<005) (Table 4). Therefore,
Hypothesis
2
was supported.
Qualitative data results
Themes extracted from respondents’ answers to the open-
ended question indicate that the caregiving experience
Table 1 Reliability statistics for the ZBI and LSRS (N=72).
Scale Cronbach’s alpha
ZBI Burden in Relationship 062
Emotional well-being 078
Social and Family Life 069
Loss of Control Over One’s Life 077
Finances
Overall ZBI 091
LSRS Child Affect 080
Child Behaviour 086
Child Cognitions 090
Adult Affect 092
Adult Behaviour 094
Adult Cognitions 088
Total 096
Table 2 Demographic characteristics of the participants.
Frequency %
Gender
Male 12 167%
Female 60 833%
Race
White 12 167%
Black 57 792%
Asian 3 42%
Educational level
Less than high school 1 14%
High school 5 69%
Some college 20 278%
College 18 250%
More than college 28 389%
Employment status
Not employed 13 183%
Employed 58 817%
Years of caregiving
Less than 1 7 97%
1212167%
3514194%
6 or more 39 542%
Table 3 Descriptive statistics for the ZBI total and subscale
scores (N=72).
Subscales MSD
Obtained
range
Possible
ranges
Cronbach’s
alpha
Burden in
Relationship
1043 425 218 024 062
Emotional
Well-being
988 517 221 028 078
Social and
Family Life
533 311 014 016 069
Loss of Control
Over
One’s Life
557 379 015 016 077
Finances 168 130 0404...
Total ZBI 3289 1529 1063 088 091
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JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH MIXED METHODS Intra-family stressors among adult siblings
affected the lives of adult siblings in negative and positive
ways. Three overall themes and related subthemes were
identified: (1) Parental Care Rewards; (2) Parental Care
Challenges; and (3) Sibling Help. Tables 57 display the
thematic analysis results.
Parent Care Rewards
Parent Care Rewards included six subthemes; all classified
as beneficial stressors (Table 5). The greatest number of
respondents, 34 (43%), was for the subtheme, To Give
Back ‘Being able to give back to her what was done for
me as a child’. The least number of responses, five (63%),
was for the subtheme, Sense of Being Appreciated by Par-
ents ‘The most rewarding part is that my parents appreci-
ate me for every little thing I do for them and it makes me
happy a lot’. Of the 79 respondents, 16 (202%) provided
data that were categorized as the subtheme, Historical
Reflection ‘She tells me stories that I had no knowledge
about, i.e. family history, jokes’. ‘Hearing stories from her
childhood’.
Parent Care Challenges
Parent Care Challenges included nine subthemes (Table 6).
The majority of respondents, 23 (29%), reported responses
that were associated with the Sense of Imbalance subtheme
‘Not having enough time to commit to care 24 hours a
day. Working full-time and caring for my own family is a
challenge’. Fourteen (177%) respondents reported
responses that were consistent with the subtheme Loss of
Self-Regulation of Personal Time ‘Having my parent live
with me. Everything I do their care must be factored in. I
feel as if I no longer have my own life, I cannot do What I
want, How I want, When I want’. Twenty respondents
(252%) provided responses for the subthemes Sibling Prob-
lem Behaviour (SPB) and Parent Problem Behaviour (PPB).
SPB ‘Not being able to have that sibling’s unity that is
very much needed at this time; and in these last days of my
mother’s life, she is dealing with not only her disease but
also the fact of her children not being able to get along
with each other’. ‘Lack of sibling emotional support. Not
feeling appreciated by siblings. The negative relationship
Table 4 Correlation between ZBI burden and LSRS sibling relationship scale (N=72).
LSRS Child Affect Child Behaviour Child Cognitions Adult Affect Adult Behaviour Adult Cognitions
ZBI 0286* (0015) 0160 (0178) 0248* (0036) 0229 (0053) 0211 (0076) 0265* (0025) 0235* (0047)
*P<005.
Table 5 Open-ended questions (N=79 responses) related to overall theme 1: Parent Care Rewards.
Subthemes and quotes Number Per cent Stressor type
1. Giving Back
‘Responsibility to do what they did for me’.
‘Being able to give back to her what was done for me as a child’.
34 43 Beneficial
2. Ability to Provide for Parent’s Needs
‘Being there to help where she needed me most and being able to do what she wanted’.
‘The fact that I can be there for my mother when she needs me the most,
and show her how much I love her’.
24 303 Beneficial
3. Historical Reflection
‘She tells me stories that I had no knowledge about, i.e. family history jokes’.
‘Hearing stories from her childhood’
16 202 Beneficial
4. Enabling Parent Contentment
‘I have been able to spend more time with her and keeping her happy’.
‘Making parent comfortable’.
‘Knowing that I can help them and love them’
8101 Beneficial
5. Knowing Parent is Safe/At Home
‘Knowing she is safe. Knowing she desires to stay home’.
‘Keeping the parent out of the healthcare facility (nursing home).
Contribute to the comfort of the parent, observing, providing
good personal grooming, hygienic care and safe environment’.
789 Beneficial
3176 ©2016 John Wiley & Sons Ltd
P. C. Ngangana et al.
that developed with my siblings’. ‘My siblings distance
themselves from me and act as though I have done some-
thing wrong’.
Parent Problem Behaviour ‘Another difficult part is
doing my best and not feeling appreciated by my Mom.
She accuses me of trying to kill her’. ‘It appeared that
Table 6 Overall theme 2: Parent Care Challenges (N=79 responses).
Number Per cent Stressor type
1. Sense of Imbalance:
‘Not having enough time to commit to care 24 hours a day.
Working full-time and caring for my own family is a challenge’.
‘Adjusting to a new lifestyle, where sometimes I had to make a
decision between my family (household and my parent)’.
23 294 Noxious
2. Loss of Sense of Self-Regulation of Personal Time:
‘Having my parent live with me. Every time I do their care must
be factored in. I feel as if I no longer have my own life,
I cannot do What I want, How I want, When I want’.
...disregard for the time I have available’.
14 177 Noxious
3. Watch Parent’s Decline/Prospects of Death:
‘To watch my mother dying is hard’.
‘Also seeing the decline and difference in what my parents was and has become’.
17 215 Noxious
4. Caregiving Overload:
‘I have no vacation from her. I feel exhausted from the care’.
‘The most difficult part is how my siblings treat our parent and myself.
They have left the care or responsibility on me. Being that I am the
oldest girl, loving and kind, they allow me to be the only caregiver.
Since I have to do it all alone, it makes me tired, angry and frustrated most of the time’.
563 Noxious
5. Parent Problem Behaviour
‘Another difficult part is doing my best and not feeling appreciated
by my Mom. She accuses me of trying to kill her’.
‘It appeared that she is never satisfied with my efforts of caring
for her. She always felt that I wasn’t putting in my very best.
It is so difficult to please her. I felt unappreciated and discouraged’.
‘Contending with personality disorder of my parent and her tendency
to manipulate situations such that there is constant contention
between me and my siblings. My parent disregard and lack of
recognizing my personal family and work obligations, disregard for
the time I have available. Making me feel like no matter what I do, it is never enough’.
‘She is unforgiving and vindictive. She is very difficult to please’.
12 151 Noxious
6. Sibling Problem Behaviour:
‘Not being able to have that sibling’s unity that is very much needed at
this time; and in these last days of my mother’s life, she is dealing with
not only her disease but also the fact of her children not being able to
get along with each other’.
‘Lack of sibling emotional support. Not feeling appreciated by siblings.
The negative relationship that developed with my siblings’.
‘My siblings distance themselves from me and act as though
I have done something wrong’.
8101 Noxious
7. Financial Constraints
‘The most difficult part of caring for my parent is when I am
working and earning is not enough to sustain my family but I am obligated
to administer to them makes it difficult’. ‘Meeting demands when resources are low’.
338 Noxious
8. Physical Care
‘Having to bathe my mother and change her clothing. I felt she knew it
was uncomfortable for me’.
‘Physically moving her’.
563 Noxious
9. Nothing
‘Joy’
113 Beneficial
©2016 John Wiley & Sons Ltd 3177
JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH MIXED METHODS Intra-family stressors among adult siblings
she is never satisfied with my efforts of caring for her.
She always felt that I wasn’t putting in my very best. It
is so difficult to please her. I felt unappreciated and dis-
couraged’.
Three respondents’ (38%) responses reflected the Finan-
cial Constraints subtheme ‘The most difficult part of car-
ing for my parent is when I am working and earning is not
enough to sustain my family but I am obligated to adminis-
ter to them makes it difficult’ One respondent (13%)
answered that taking care of the parent was a ‘joy’, which
was classified as the Nothing subtheme and considered a
beneficial stressor. All other subthemes were regarded as
noxious stressors.
Sibling Help
Sibling Help included eight subthemes (Table 7). Responses
were regarded as beneficial or noxious stressors or both.
The greatest number of respondents, 22 (27%), provided
data that as categorized as the subtheme, Shared Responsi-
bility [Equally] ‘They are willing to do whatever it takes.
We all work together collectively as a team’. The least
number of responses, four (506%), was for the subtheme,
Everything ‘I make all the doctor appointments and take
the parent, give emotional support, providing shelter, com-
fortable bed and secure, proper environment, is kept safe
and warm. Assist with the care and grooming. Take care of
Table 7 Overall theme 3: Sibling Help (N=79 responses).
Number Per cent Stressor type
1. Shared Responsibilities (Equally)
‘They are willing to do whatever it takes. We all work together collectively as a team’.
‘My sibling takes turn in the care of our parent. My sibling takes our parent for medical and
other appointments. My sibling is also, almost always, around when needed’.
22 278 Beneficial
2. Nothing
‘Nothing!!!!!
‘Nothing, they don’t come to visit her. They make themselves unavailable. Do not give any
financial help. Don’t call our mother’.
‘Absolutely nothing. They have their own families and majority what they are earning cannot
permit them to give our parent anything except during special occasions’.
14 177 Noxious
3. Offer Respite Time:
‘She sits with her so I can go out’.
‘My sibling will watch my mom sometimes when I need to go out for something or if I need
time to myself’.
788 Beneficial
4. Does not Live Nearby/Can’t Help/Help when Can but Live Far Away/Geographical
Distance from Care Recipient
‘They lived in different states and out of the country, and there was not much they could do
other than call to encourage me to be strong’.
‘One sibling visits us every year to help with her care. We don’t live in the same state but are
in touch daily by phone. Parent feels happy when she can talk on the phone with her children
and love ones’.
563 Mixed-beneficial
and noxious
5. Everything/A Lot/Primary Caregiver
‘Make all the doctor appointments and take the parent, give emotional support, providing
shelter, comfortable bed and secure, proper environment, is kept safe and warm. Assist with
the care and grooming. Take care of the medication, when it is ordered, hand prepared meds
to parent. Assist with meal preparation, providing clothing, food, etc. make bed, do laundry,
change linen and given some time off for myself’.
‘He oversees my mother’s medical care, handles my mother’s financial obligations, does the
necessary prep work for her taxes to be done, arranges for home healthcare assistance and
visits my mother periodically’.
4506 Noxious
6. Emotional Support
‘Support, being able to talk about caregiving difficulties’.
‘Give emotional support’.
8101 Beneficial
Inasmuch as some study participants gave more than one response to the question, the subtheme numbers exceed 79 and the per cents
exceed 100%.
3178 ©2016 John Wiley & Sons Ltd
P. C. Ngangana et al.
the medication, when it is order, hand prepared meds to
parent. Assist with meal preparation, providing clothes,
food, etc. make bed, do laundry, change linen and give
some time off for myself’.
Discussion
Study findings indicated that the majority of adult siblings
who share caregiving for parents were older, Black,
employed females, who had college education. Findings
about stressors are consistent with NSM beneficial and nox-
ious stressors. Positive and negative consequences of the
caregiving experience were reflected in themes extracted
from qualitative data. Findings of negative and positive
caregiving effects are also consistent with findings by Schulz
and Sherwood (2008), who found that caregiving may
result in stress and positive outcomes that may be beneficial
and strengthen family relationships.
Quantitative data revealed adult siblings experienced
mild-to-moderate burden when caring for parents. This
finding is consistent with that of the study by Iecovich
(2008). Inasmuch as the present study, qualitative data indi-
cate that respondents provided care to their parents to ‘give
back’, it is conceivable that they would not be inclined to
perceive caregiving for their parents as high burden as was
hypothesized. However, open-ended question responses
indicated experiences of high burden related to loss of self-
regulation for time, parent problem behaviour, financial
constraints and caregiver overload, as evident in some nega-
tive responses.
The majority of the respondents were females, burden
experienced may relate to the multiple female roles and
other gender-related challenges, such as spending more time
with the care receivers (Lai 2012).
Hypothesis
2
findings indicated that the higher the bur-
den of family stressors experienced, the poorer the adult
sibling relationship. This finding is consistent with find-
ings by Tolkacheva et al. (2011). They found that adult
siblings who were experiencing disagreements experience
considerable burden. The negative correlation between
burden and adult sibling relationship might be associated
with the dynamics of the caregiving role that adult sib-
lings played, which was corroborated in the qualitative
data.
Qualitative data corroborated qualitative data; for exam-
ple, Parent Care Challenges related to the ZBI domains of
Loss of Control Over One’s Life, Emotional Well-Being
and Burden in Relationship. Furthermore, the subthemes,
Sibling Problem Behaviour and Parent Problem Behaviour,
signified burden and a strained relationship and thus
corroborated the inverse relation between caregiving burden
and adult sibling relationship found in the quantitative
study. Knowledge gained from this study provides informa-
tion that adult siblings who share caregiving for parents
can use to promote positive experiences, thus maintaining
the family as a stable unit.
Limitations
This study did not include data for the age, gender or acu-
ity of the parent. Such data would be useful for enhanced
understanding of the burden of family stressors. Further-
more, inasmuch as all data were self-reported, the effect of
social desirability reflected in the participants’ responses
cannot be discounted (LoBiondo-Wood & Haber 2006).
Generalizability is limited because the number of racial
groups was uneven. Future research with larger samples of
Asians and Whites is recommended
Conclusion
The study findings revealed that most adult siblings sharing
caregiving for their parents reported that the reason for giv-
ing care to parents was to give back. However, they experi-
enced mild-to-moderate burden, which affected their sibling
relationships negatively. This study has provided knowledge
about noxious and beneficial family stressors that nurses
can use to develop anticipatory guidance educational mod-
ules for adult siblings who are undertaking a parental care-
giving role. Community leaders, politicians and other
stakeholders should be made aware of the dynamics
involved in parental caregiving, so that appropriate
resources can be allocated to promote well-being of older
adults who remain at home.
Acknowledgements
We are grateful to Dr. Jacqueline, FAWCETT, RN, ScD
(hon), FAAN, Professor, Department of Nursing, University
of Massachusetts Boston, for her altruistic guidance and
consultation during this research process.
Funding
This research received no specific grant from any funding
agency in the public, commercial or not-for-profit sectors.
Conflicts of interest
No conflict of interest has been declared by the authors.
©2016 John Wiley & Sons Ltd 3179
JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH MIXED METHODS Intra-family stressors among adult siblings
Author contributions
All authors have agreed on the final version and meet at
least one of the following criteria [recommended by the
ICMJE (http://www.icmje.org/recommendations/)]:
substantial contributions to conception and design,
acquisition of data, or analysis and interpretation of
data;
drafting the article or revising it critically for important
intellectual content.
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JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH MIXED METHODS Intra-family stressors among adult siblings
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... We are not here explaining why respondents develop expectations of their siblings abroad-for example, why they develop similar reactions to different situations or different responses to the same circumstances. Such variation could be related to many issues-gender, finances, parent-child relations, attitudes of spouses, family structure and history, availability of local kin, assumptions about emigrants' destination countries, or even personality (Hequembourg and Brallier 2005;Ngangana et al. 2016;Suitor et al. 2013). Explaining the ways these factors affect transnational family relations is beyond our scope here. ...
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This article offers the concept of “economies of recognition” to analyze the moral frames that siblings caring for left-behind parents in China use to negotiate intimate connections to their emigrant brothers and sisters. We argue that the impact of family dislocation on sibling relations is shaped by family members’ co-constructed relational infrastructure. Our findings identify four types of relational infrastructure—collaboration, intrusion/interference, voluntary takeover, and feeling left behind—that mediate the impact of geographic proximity on parental caregiving. We suggest that the interplay between physical distance and elder care is emotionally experienced, interactionally evaluated, and symbolically understood. Understanding solidarity, conflicts, and ambivalence in the contexts of family crisis requires a close examination of how members of a care network attribute each other’s roles and contributions to power symmetry or asymmetry. This explains why the advice, information, money, people, and emotions that are circulated are thought of as helpful resources in some cases but perceived as constraints in others.
... Siblings who take on more care responsibilities report more negative effects on their health (e.g. stress and burden) and disruptions to their lifestyles compared to their siblings (13,23,24). Female caregivers are more likely to report that caregiving interferes with their other roles than their male counterparts (25). ...
... Our findings are consistent with current literature regarding consequences of shared caregiving on sibling relationship quality. Two studies found that adult siblings experiencing family conflict and disagreements with sharing care also experienced more burden and more negative effects on the sibling relationship (24,42). Our findings added to the literature by considering the interaction between caregivers' initial expectations that care would be equally shared, factors that affect siblings' abilities to share care, and, ultimately, their acceptance of these factors. ...
Article
Background: Siblings often share in the care of parents with dementia, but little is known about how care is shared. Research suggests that in comparison with their brothers, sisters provide the majority of care to a parent with dementia and this can contribute to the sisters experiencing poorer health outcomes. There is limited knowledge about how to guide siblings who share in the care of a parent with dementia. Aim: Our qualitative descriptive study sought to explore the experiences of adult daughters sharing care responsibilities with their siblings. The study protocol was approved by institutional (University of Toronto and Baycrest Health Sciences) research ethics boards. Materials & methods: Thirty-four daughters participated in an online qualitative survey. Data were analysed using Braun and Clarke's (Qualitative Research in Psychology, 3, 2006, 77) 6-step process. Results: In an overarching theme, daughters expected shared caregiving with their siblings. They conceptualised this to be a practice of being equitable in dividing care responsibilities and fulfilling a supportive role for a parent with dementia; however, this expectation was not met by most daughters. Two subthemes were identified: (a) factors facilitating/constraining shared caregiving and (b) consequences of sharing care. The findings highlight the importance of understanding shared caregiving among siblings when caring for a parent with dementia. Discussion: Results from this study suggest that although shared caregiving is often the goal, factors such as gender roles, geographical proximity, caregiver expertise/skill set and work schedules affect caregivers' abilities to share caregiving. These factors affected whether daughters viewed the caregiving situation as being shared equitably or inequitably, and this led to feelings of acceptance or resentment of their sibling's contribution to the care of their parent. Conclusions: Healthcare providers can utilise these findings to better support adult-child caregivers negotiating care with their siblings.
... The relationship is likely complex. A main caregiver arrangement is common among siblings and perceived inequity, poor sibling relations and lack of sibling involvement is linked to higher care-giver stress, yet equal sharing is not a necessity as occasional respite, emotional support and encouragement from siblings have also been cited as beneficial (Ingersoll-Dayton et al., 2003;Leinonen, 2011;Leopold et al., 2014;Ngangana et al., 2016). One Canadian study found half of parent-carers felt they had a choice to provide care and, aligned with the framework of Pearlin et al. (1990), this was related to higher life satisfaction and reduced psychological symptoms (Li and Lee, 2020). ...
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Adult children with siblings can share caring for older parents but adult only children face this responsibility alone. Given increased longevity and reliance on informal care-giving, as well as an increase in one-child families, there is a need to investigate only children's care-giving further. Using data from three large-scale British birth cohorts, this paper investigates patterns of parent-care, care intensity and wellbeing at ages 38 and 42 (N = 17,255, N = 16,703; born 1970), 50 and 55 (N = 12,775, N = 11,339; born 1958) and 63 (N = 2,364; born 1946), how sibling composition intersects with gender in relation to care-giving and whether different care-giving patterns are associated with wellbeing. Only children are more likely to provide parent-care and the pattern is consistent with an interpretation that differences by sibling status might increase with age. Provision is gendered, and the sibling group composition matters for involvement. Although care-giving is related to wellbeing, we found no evidence that this differs between only children and those with siblings. The literature on only children has hitherto focused largely on childhood, suggesting that on some outcomes they benefit from a concentration of parental resources. Our results suggest that in middle adulthood parental care needs may instead be concentrated for the only child without the ‘resource’ of siblings. This indicates a need to develop further our understanding of this growing demographic subgroup.
... Awadalla et al. [89] attribute this positive impact to family cohesion, and an attitude of hopefulness. Adult siblings caring for their parents reported that they see caregiving as a way of giving something back to parents [90]. Although the health status of family members with caring experience was lower than that of non-carers in an Australian study, the difference in scores did not reach the minimal important difference (MID) magnitude for either the mental or physical domains of SF-12, suggesting that caregivers might be satisfied in their caring roles [91]. ...
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Background A person’s chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures. Methods The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument. Results Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference. Conclusions Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.
... The most common type of nonprofessional caregiver is a family member, althought there is an increase in the number of caregivers contracted by families or the person being cared for who are not trained health care professionals [3,4]. According to the national and international literature, there is a consensus that people who take on the role of nonprofessional caregivers-continuously and/or over a long period of time-must carry out multiple and/or complex tasks, which often leads to feelings of discouragement and stress [5,6]. Evidence suggests that nonprofessional caregivers may experience negative symptoms such as sleep disturbance, fatigue, depression, and anxiety [7,8]. ...
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Background While nonprofessional caregivers often experience a sense of fulfillment when they provide care, there is also a significant risk of emotional and physical burnout. Consequently, this can negatively affect both the caregiver and the person being cared for. Intervention programs can help empower nonprofessional caregivers of people with chronic diseases and develop solutions to decrease the physical and psychological consequences resulting from caregiving. However, most clinically tested intervention programs for nonprofessional caregivers require face-to-face training, and many caregivers encounter obstacles that hinder their participation in such programs. Consequently, it is necessary to design internet-based intervention programs for nonprofessional caregivers that address their needs and test the efficacy of the programs. Objective The aim of this study was to evaluate the effectiveness of a smartphone app–based intervention program to increase positive mental health for nonprofessional caregivers. Methods This study was a randomized controlled trial of 3 months’ duration. A total of 152 caregivers over 18 years of age with a minimum of 4 months’ experience as nonprofessional caregivers were recruited from primary health care institutions. Nonprofessional caregivers were randomized into two groups. In the intervention group, each caregiver installed a smartphone app and used it for 28 days. This app offered them daily activities that were based on 10 recommendations to promote positive mental health. The level of positive mental health, measured using the Positive Mental Health Questionnaire (PMHQ), and caregiver burden, measured using the 7-item short-form version of the Zarit Caregiver Burden Interview (ZBI-7), were the primary outcomes. Users’ satisfaction was also measured. Results In all, 113 caregivers completed the study. After the first month of the intervention, only one factor of the PMHQ, F1–Personal satisfaction, showed a significant difference between the groups, but it was not clinically relevant (0.96; P=.03). However, the intervention group obtained a higher mean change for the overall PMHQ score (mean change between groups: 1.40; P=.24). The results after the third month of the intervention showed an increment of PMHQ scores. The mean difference of change in the PMHQ score showed a significant difference between the groups (11.43; P<.001; d=0.82). Significant changes were reported in 5 of the 6 factors, especially F5–Problem solving and self-actualization (5.69; P<.001; d=0.71), F2–Prosocial attitude (2.47; P<.001; d=1.18), and F3–Self-control (0.76; P=.03; d=0.50). The results of the ZBI-7 showed a decrease in caregiver burden in the intervention group, although the results were inconclusive. Approximately 93.9% (46/49) of the app users indicated that they would recommend the app to other caregivers and 56.3% (27/49) agreed that an extension of the program’s duration would be beneficial. Conclusions The app-based intervention program analyzed in this study was effective in promoting positive mental health and decreasing the burden of caregivers and achieved a high range of user satisfaction. This study provides evidence that mobile phone app–based intervention programs may be useful tools for increasing nonprofessional caregivers’ well-being. The assessment of the effectiveness of intervention programs through clinical trials should be a focus to promote internet-based programs in health policies. Trial Registration ISRCTN Registry ISRCTN14818443; http://www.isrctn.com/ISRCTN14818443 International Registered Report Identifier (IRRID) RR2-10.1186/s12889-019-7264-5
... 'followed a thread' of new concepts from the qualitative data back to the quantitative data. Similarly,Ngangana, Davis, Burns, McGee, and Montgomery (2016) state that the qualitative and quantitative components of their study were mixed in the interpretation stage, but they do not outline the process.In their review of 294 MMR studies in nursing, published between 1998-2015, Beck and Harrison (2016) found that integration of the qualitative and quantitative components was minimal. Their assertions compare to those of O'Cathain et al. (2008) who stated that: Judgements about integration could rarely be made due to the absence of an attempt at integration of data and findings from different components within a study (p. ...
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Aims: To consider the scope and quality of mixed methods research in nursing. Design: Focused mapping review and synthesis (FMRS). Data sources: Five purposively selected journals: International Journal of Nursing Studies, Journal of Nursing Scholarship, Journal of Advanced Nursing, Worldviews on Evidence-Based Nursing, and Journal of Mixed Methods Research. Review methods: In the target journals, titles and abstracts from papers published between 2015-2018 were searched for the words or derivative words 'mixed methods'. Additional keyword searches were undertaken using each journal's search tool. We included studies that investigated nursing and reported to use a mixed methods approach. Articles that met the inclusion criteria were read in full and information was extracted onto a predetermined pro forma. Findings across journals were then synthesized to illustrate the current state of mixed methods research in nursing. Results: We located 34 articles that reported on mixed methods research, conducted across 18 countries. Articles differed significantly both within and across journals in terms of conformity to a mixed methods approach. We assessed the studies for the quality of their reporting as regard the use of mixed methods. Nineteen studies were rated as satisfactory or good, with 15 rated as poorly described. Primarily, a poor rating was due to the absence of stating an underpinning methodological approach to the study and/or limited detail of a crucial integration phase. Conclusions: Our FMRS revealed a paucity of published mixed methods research in the journals selected. When they are published, there are limitations in the detail given to the underpinning methodological approach and theoretical explanation.
Article
Relationships between siblings have been described as the longest lasting an individual can have, yet siblings both can and do become estranged from one another in adulthood. An online survey was disseminated to individuals who had sought support from the charity Stand Alone, which supports individuals who are experiencing family estrangement. Individuals estranged from one full genetic sister and/or brother were asked to describe the relationship in their own words. Open-text responses were thematically analysed from 291 respondents. Family systems were described as being characterised by estrangements, alliances and conflicts; there was variation in the participant’s preferences regarding reconciliation; and most respondents focused on describing their sibling’s challenging or disappointing characteristics and behaviour. The fact that siblings both can and do become estranged challenges commonly held assumptions about family relationships, confirming that they are not necessarily or always life-long, significant or supportive.
Article
The Neuman Systems Model was developed to create a structure to depict nursing clients as complex systems, in constant energy exchange with their environments, comprised of multiple interrelated parts. It has been widely used in practice, education, research, and administration. An analysis of the theory, based upon Meleis’ methods, was conducted. The theory has high utility and a large circle of contagiousness despite its complexity, lack of teleology, and level of abstractness. Based upon this analysis, a new model entitled the Neuman Systems Model Perspective of Nurse-Led Interprofessional Collaborative Practice has been created to provide a framework for the care of community-dwelling older adults. As a first step in its development, this new model will be used to guide a mixed-methods study evaluating an interprofessional collaborative practice intervention for community-dwelling older adults.
Article
As the population ages, siblings more frequently assume the role of filial caregiver. Siblings often avoid communication about caregiving, and this topic avoidance can be detrimental to well-being. Framed in the communication privacy management theory (CPM), the current study tests the associations between privacy rule criteria and siblings’ caregiving topic avoidance and the impact of topic avoidance on relationship satisfaction and depression. A sample of 415 caregivers, including 242 primary caregivers and 173 secondary caregivers, completed an online survey regarding their caregiving communication with a sibling. Topic avoidance about both parent well-being and sibling caregiving were positively associated with privacy rule criteria of parent health, liking, and risk-benefit ratio and negatively associated with trust. Parent well-being topic avoidance was associated positively with primary caregivers’ depression and negatively with relationship satisfaction for both primary and secondary caregivers. Sibling caregiving topic avoidance was associated positively with depression and negatively with relationship satisfaction for both primary and secondary caregivers.
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This article locates an understanding of comparative grounding of aging through the theory of globalization. It reviews the trends of aging in various countries across the continents and points out important policy issues facing nation states with decreasing sovereignty in the face of various challenges brought about by globalization. The need to reconsider theorizing aging by exploring and integrating theories of globalization is highlighted. © Canadian Journal of Sociology/Cahiers canadiens de sociologie.
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The purpose of this paper is to discuss the development of research questions in mixed methods studies. First, we discuss the ways that the goal of the study, the research objective(s), and the research purpose shape the formation of research questions. Second, we compare and contrast quantitative research questions and qualitative research questions. Third, we describe how to write mixed methods research questions, which we define as questions that embed quantitative and qualitative research questions. Finally, we provide a framework for linking research questions to mixed methods data analysis techniques. A major goal of our framework is to illustrate that the development of research questions and data analysis procedures in mixed method studies should occur logically and sequentially.
Article
Future cohorts of older Thais will have fewer and more dispersed children. This will result in a continuing decline in coresidence with children that has been the lynchpin of the traditional familial system of old age support. The aim of the present study is to examine how parents who are approaching old age and their adult children view these changes and how they intend to deal them. A mixed method approach is used combining analysis of national survey data and open-ended interviews and discussions. The results reveal widespread awareness of reduced family size, increased migration, and lowered chances that aging parents live with or near adult children. Many near elderly parents express concerns about becoming a burden to their children and thus wish to maintain their independence as long as possible. At the same time, however, strong normative support persists for coresidence or proximal living arrangements and for children to be main care providers when the need eventually arises. Adult children generally proclaim willingness to live with and care for parents but it remains an open question if these intentions will be carried out especially if they have established themselves and their own conjugal families elsewhere. Thus a major disjuncture exists between norms and the changing empirical reality. Several potential solutions to meeting the challenges are assessed in the conclusions including relying on paid caregivers, using community based volunteers, and promoting economic activity of older persons.
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PART I. OVERVIEW OF RESEARCH AND EVIDENCE-BASED PRACTICE Research Vignette: Improving Supportive Care for Cancer Patients and Their Families * Integrating Research, Evidence-Based Practice, and Quality Improvement Processes * Research Questions, Hypotheses, and Clinical Questions * Gathering and Appraising the Literature * Theoretical Frameworks for Research New! PART II. PROCESSES AND EVIDENCE RELATED TO QUALITATIVE RESEARCH Research Vignette: Program of Research on Substance Use Disorders * Introduction to Qualitative Research * Qualitative Approaches to Research * Appraising Qualitative Research PART III. PROCESSES AND EVIDENCE RELATED TO QUANTITATIVE RESEARCH Research Vignette: From Pressure Ulcer Prediction to Preventive Interventions * Introduction to Quantitative Research * Experimental and Quasi-Experimental Designs * Nonexperimental Designs * Systematic Reviews and Clinical Practice Guidelines New! * Sampling * Legal and Ethical Issues * Data Collection Methods * Reliability and Validity * Data Analysis: Descriptive and Inferential Statistics * Understanding Research Findings * Appraising Quantitative Research PART IV. APPLICATION OF RESEARCH: EVIDENCE-BASED PRACTICE Research Vignette: Incorporating Information and Communication Technology Tools for HIV into Practice * Strategies and Tools for Developing an Evidence-Based Practice* Developing an Evidence-Based Practice* Quality Improvement New! APPENDICES