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EMPIRICAL STUDIES
Children with ill parents: extent and nature of caring
activities
Ellen Katrine Kallander MSc (PhD candidate)
1,2
,Bente M. Weimand RN, RPN, PhD (Researcher)
1
,
Saul Becker PhD (Professor, Pro-Vice-Chancellor and Head of the College)
3
,Betty Van Roy MD, PhD (Head of
Department)
4
,Ketil Hanssen-Bauer MD, PhD (Head of Department and Associate Professor)
1,2
,Kristin
Stavnes MD (PhD candidate)
2,5
,Anne Faugli MD, PhD (Consultant)
6
,Elin Kufa
˚sSW, MSc (Adviser)
6
and
Torleif Ruud MD, PhD (Professor emeritus)
1,2
1
Division Mental Health Services, Akershus University Hospital, Lørenskog, Norway,
2
Institute of Clinical Medicine, University of Oslo,
Oslo, Norway,
3
College of Social Sciences, University of Birmingham, Birmingham, UK,
4
Department of CAMHS, Clinic of Children and
Adolescent Medicine, Akershus University Hospital, Lørenskog, Norway,
5
The Research Department, Nordland Hospital Trust, Bodø,
Norway and
6
Vestre Viken Hospital Trust, Drammen, Norway
Scand J Caring Sci; 2017
Children with ill parents: extent and nature of caring
activities
Rationale: Previous studies have shown that children may
take on higher extents of caring activities if their parents
are affected by severe illness or disability, especially when
their parents lack access to formal and informal care.
Aims and objectives: This study examined the extent and
nature of caring activities done by patients’ children; dif-
ferences in caring activities between different types of
parental illness; factors associated with caring activities.
Design: An explorative cross-sectional multicentre study.
Methods: Parents as patients in specialised healthcare ser-
vices, and their children, were recruited from five health
trusts in Norway. The sample included 246 children aged
8–17 years and their 238 parents with severe physical ill-
ness (neurological disease or cancer) (n =135), mental
illness (n =75) or substance abuse (n =28).
Main outcome measure: Multidimensional Assessment of
Caring Activities (MACA-YC18).
Results: A large number of children with ill parents are
performing various caring activities. Increased caring
activities among children due to their parent’s illness
were confirmed by their parents, especially with regard
to personal care. We found no significant differences in
the extent of caring activities between illness types, but
there were some differences in the nature of these activi-
ties. Factors significantly associated with the extent and
nature of caring activities were as follows: better social
skills and higher external locus of control among the
children; and poorer physical parental health. Parent’s
access to home-based services was limited.
Study limitations: In recruitment of participants for the
study, a sampling bias may have occurred.
Conclusion: To promote coping and to prevent inappropri-
ate or extensive caring activities among children with ill
parents, there is a need for increased access to flexible
home-based services adapted to the type of parental
illness.
Keywords: young caregivers, young carers, coping,
children, adolescents, parental severe physical illness,
parental mental illness, parental substance abuse, cross-
sectional study.
Submitted 22 May 2017, Accepted 28 June 2017
Introduction
Children and adolescents may take on higher extents of
caring activities when parents are affected by severe ill-
ness or disability, especially in the absence of formal and
informal support (1–11). Young carers may be defined as
children younger than 18 who provide or intend to pro-
vide care and/or support to another family member and
regularly perform significant or substantial caring tasks
by assuming adult-associated responsibilities’ (12). Stud-
ies about ‘young carers’ show that they are at risk for
poorer physical health (8, 13), poorer mental health (2, 9,
14, 15), lower well-being (8, 16–19) and limitations in
possibilities for higher education (7, 20, 21), than their
age-matched counterparts. Positive outcomes, such as
resilience and self-esteem, seem to be positively related
Correspondence to:
Ellen Katrine Kallander, Division Mental Health Services,
Akershus University Hospital, Box 1000, 1478 Lørenskog, Norway.
E-mail: Ellen.Katrine.Kallander@ahus.no
1©2017 Nordic College of Caring Science
doi: 10.1111/scs.12510
to social recognition of the caregiving role and support
from friends or family (3, 22–26).
Increasing focus on young carers has contributed to the
development of effective interventions, and to increased
awareness of these caregivers in several countries
(7, 27–29). In 2010, Norway introduced a legislative
amendment requiring healthcare personnel to ask patients
whether they have children, and to ensure children’s
needs for information and follow-up, including referral to
appropriate services, are met. This amendment included
children with parents with severe physical illness and/or
mental illness (PI and MI, respectively), and/or substance
abuse (SA) (30). There is governmental awareness that
these children might be or become young carers. However,
legal rights for young carers, such as those practiced in the
UK since the early 1990s, have not been implemented
within the Norwegian health services (29).
Studies in Europe, Australia and the United States
(US) indicate that between 2% and 8% of children
younger than 18 were young carers (7, 27, 29, 31). In a
Swedish population study of young carers, a total of 7%
reported very high extent of caring activities (32). A Nor-
wegian population time use survey showed that 1% of
children aged 9–15 years and 2% of adolescents aged 16–
24 years provided care for ill, elderly or adult family
members (33). The use of different research methods and
definitions of young carers contributes to differences in
prevalence (21, 29, 31). Young carer studies show that
they spent more time on a greater variety of caring activ-
ities, than their counterparts in the general population
(13, 23, 32, 34).
A variety of demographic variables related to children
and parents have been shown to be associated with the
extent and nature of caring activities done by children.
Mothers with illness received more caring activities than
fathers (6, 13, 20, 28, 35). Some studies of young carers
found that children reported higher extents of caring
activities, specifically domestic and personal care, as their
ages increased (20, 28). Low family income and single-
parent households have been found to predict higher
extents of caring activities (2, 7, 13, 17, 27, 36); how-
ever, a recent study found no significant influences for
single-parent households (13).
Illness-related characteristics such as the parent’s illness
type, severity, and duration were associated with higher
extents of caring activities in children (2, 8, 37). Children
with PI parents performed more caring activities than
children with MI parents (28, 35), and even more when
parents experienced a combination of PI and MI (28).
Provisions for a parent’s personal care seemed common
when the parent had a severe PI (10, 17), compared to
children with MI (28, 35). One recent study found no
significant differences in extent and nature of children’s
caring activities among the three illness groups PI, MI
and PA (2).
Lack of access to formal care such as home-based ser-
vices, or informal care within the family or network, was
other significant factors described in several studies
(1–11, 20, 27, 38–41). Essentially, children were placed
into the role of caring when there were no other alterna-
tives (7, 29, 42).
Most studies on young carers have been qualitative;
there are only a few quantitative studies with validated
questionnaires (13, 28, 29). To our knowledge, no studies
of young carers have quantitatively explored children’s
own perceptions of their social skills or locus of control
(LoC), which are factors that may possibly be related to
children’s caring activities during periods of parental ill-
ness. Children with high external LoC may perceive that
outcome of events is controlled by external circumstances,
while children with high internal LoC may perceive that it
is under their control (43, 44). High levels of social skills
may indicate the ability to successfully complete social and
other tasks (45, 46). Furthermore, studies on young carers
have rarely included data on the ill parent’s perspectives
on their children’s caring activities, perceived parental
capacity to care for the children during illness, and the par-
ent’s access to formal and informal care.
There is a need for more quantitative studies on young
carers, which includes well-established questionnaires
aimed at both children and their ill parents, and which
compare young carers caring activities across subgroups
of parental illnesses (29).
Research questions
In the present study we had the following research
questions:
1 What are the extent and nature of caring activities
undertaken by children with ill parents?
2 Are there differences in the patterns of caring activities
in relation to different types of parental illnesses?
3 Which factors are associated with the extent and nat-
ure of caring activities?
Methods
Design
The paper reports from a Norwegian explorative and
cross-sectional multicentre study.
Sample
The sample consisted of 246 children age of 8–18 years
and 238 of their parents, recruited during treatment of
one parent and from five Norwegian health trusts. Eight
parents were not able to complete the questionnaire due
to their illness. Inclusion criteria for the patients included
several factors: inpatient or outpatient within specialised
2E.K. Kallander et al.
©2017 Nordic College of Caring Science
health services; having at least one biological or adoptive
child; providing parental care for the child at least every
second weekend; and understanding the Norwegian lan-
guage. The families were chosen in accordance with leg-
islation requirements regarding children as relatives,
which applies to children of parents with severe physical
illness (PI), mental illness (MI) and/or substance abuse
(SA). PIs in the current study were limited to cancer
(active or palliative treatment) or severe neurological dis-
eases. This project aimed to recruit a representative sam-
ple of patients with children from two, outpatient and
two inpatient units randomly selected for each of the
three patient groups at each health trust, using randomly
assigned recruitment days or weeks at each unit, and bal-
ancing the inclusion of outpatient to inpatient in a 4:1
ratio in accordance with annual national statistics on dis-
tribution of patients in contact with the specialised health
services during a year.
Instruments and measures
The selection of instruments and measures in this study
was based on validation for assessing the extent and nature
of caring activities, and for factors indicated as significant
for children’s caring activities: sociodemographic variables;
type and severity of illness; parental capacity and function-
ing; social support within the family or network, and
formal care like home-based services (1, 4–8, 10, 15, 36).
Children/adolescents. Multidimensional Assessment of Caring
Activities (MACA-YC18) is a self-report 18-item measure
of extent and nature of caring activity by young people,
with a total score ranging from 0 to 36, and six subscales
for domestic tasks, household management, financial/
practical management, personal-, emotional-, and sibling
care, with a range from 0 to 6 (25). An additional sub-
scale, health care, included three items from the extended
MACA-YC42 version (26). The items are answered on a
three-point scale. Reliability measured by Cronbach’s
alpha has been 0.78 for the original English version and
0.70 for the Norwegian version in our study.
We also measured hours spent by the children on car-
ing activities in an ordinary week, answered on a five-
point scale (1–4, 5–9, 10–19, 20–49 hours, or more than
50 hours).
Locus of control (LoC) was measured with a short ver-
sion with 14 items from the Nowicki-Strickland Chil-
dren’s Locus of Control Scale (44). The eight and six
items of internal and external LoC, respectively, were
answered with dichotomous response categories, No
(scored 0) or Yes (scored 1). The total score with items
on internal control reversed ranges between 0 and 14,
and a higher score indicating higher external LoC. Relia-
bility measured with Cronbach’s alpha has been shown
to be 0.66 for LoC (44), and was 0.37 in our study.
Social skills were measured with 34 items from Social
Skills Rating System [SSRS] (47–50) with four subscales:
co-operation, assertion, self-control and responsibility.
The Norwegian version is identical to the US version,
except for an increase from a three to a four-point scale
(Never =0, Sometimes =1, Often =2, Almost always =
3). Reliability measured by Cronbach’s alpha for the Nor-
wegian SSRS version has been shown to be 0.64 (50). In
our study, it was 0.92 for the version for children age of
8–13 years (N =151) and 0.90 for the version for chil-
dren age of 14–18 years (N =95).
Patient parents. Three questions on the parents’ percep-
tion of increased caring activities by their children were
designed for our study: (i) ‘Has your child had to under-
take caring activities at home, because of your illness?’
(ii) ‘Has your child helped you out with personal care
you usually would have done yourself, because of your
illness?’ and (iii) ‘Has the child taken on caring activities
because health care or home-based services have not per-
formed these activities?’. These were answered using a
four-point scale (Never =0, Some =1, Often =2, A
lot =3).
Health status was measured by Health Survey SF-8, a
shorter form of SF-36 (51, 52) with a 4 item physical
component scale (PSC, including physical functioning,
role limitations due to physical health problems, bodily
pain, general health) and a four-item mental component
scale (MCS, including vitality, social functioning, role
limitations due to emotional problems and mental
health), with a one-week recall period. Each item has a 5
or 6 point response range. SF-8 is proven to be sensitive
to changes. Total scores in our study ranged from 25 to
55 with higher scores indicating better health. Reliability
measured by Cronbach’s alpha for SF-8 was 0.87 in our
study.
Mental health status was measured by Hopkins Symptom
Check List 10 (SCL-10) (53), with four questions on anx-
iety and six on depression, with a 1-week recall period
on a four-point scale (from 1 =Not at all to 4 =
extremely), with mean score above 1.85 indicating signif-
icant symptoms. Cronbach’s alpha was 0.88 in another
Norwegian study (53), and 0.91 in our study.
Parental capacity for taking care for his/her child was
measured by eight study questions to assess the parent’s
capacity to perform several functions: do practical work
at home; ensure that the child arrives at school in time;
follow-up on the child’s school work; emotionally sup-
port the child; maintain structure in everyday life; fol-
low-up on his/her child’s leisure time activities; organise
social activities for the family; and participate in social
activities with his/her child outside the home. The items
were answered on a four-point scale (No =1, a little =2,
some =3, a lot =4). Reliability assessed by Cronbach’s
alpha was 0.91.
Extent and nature of caring activities 3
©2017 Nordic College of Caring Science
Informal care within the family was measured by Family
cohesion, with the 10 item cohesion subscale of the Family
Adaptability and Cohesion Evaluation Scale [FACES III]
(54–57). The items were answered on a five-point scale
(almost never =1 to almost always =5), with higher
scores indicating more cohesion. Cronbach’s alpha has
been shown to be 0.77 (55) and was 0.93 in our study.
Informal care within the network was assessed by Social
support with Interpersonal Support Evaluation List-12
(ISEL-12), a short form of the longer 40 item version
(58). The items have a four-point respond scale (defi-
nitely false =0 to definitely true =3), and the total sum
score ranges from 0 to 36; higher scores indicated more
social support. Cronbach’s alpha has been shown to be
0.70 (59) in a previous study and was 0.48 in our study.
Formal care was assessed with the patients home-based ser-
vices by two items designed for our study: ‘Do you receive
home-based service to ensure your own needs?’ and ‘For
how many hours a week do you receive home-based ser-
vices for practical help and/or emotional support?’
Data collection
Data were collected over a period of 20 months (May
2013–January 2015) in five health trusts, in three out of
four Norwegian health regions. The patient and family
were given written and oral information about the study,
and written informed consent was obtained from chil-
dren and parents. In accordance with The Norwegian
Health Research Act, both parents gave consent for chil-
dren between the age of 8 and 15 years, while children
16 years or older gave consent by themselves.
Two trained personnel met the family at a time and
location chosen by the family, which was usually in the
family’s home. The personnel were available for clarifica-
tions, while the parent and the child answered online
questionnaires on separate tablets without cooperation.
Only one randomly selected child from each family was
included in the study. The mean time for completion was
45 minutes for the children and 60 minutes for the par-
ents. The family received two cinema tickets as compen-
sation for their time.
Data analyses
Data analyses were performed using SPSS 23 (60).
Descriptive analyses describe the sample characteristics,
and extent and nature of caring activities; PI, MI and SA
(Table 1–3). Analysis of variance (ANOVA) with the Bon-
ferroni post hoc test was used to examine differences in
patterns of caring activities in relation to the three paren-
tal illness subgroups (Table 4). Multiple linear regressions
were performed to examine factors associated with the
extent and nature of caring activities (Table 5).
Results
Extent and nature of caring activities
The extent and nature of caring activities reported by
the children are presented in Table 2 and 3. Under
practical caring categories domestic activities and household
tasks were performed by a majority of the children, and
more than one in ten performed financial and practical
management. Under more intimate activities, one in 10
took on personal care, and emotional care for the ill par-
ent was reported by six in 10. Three in 10 provided
sibling care.Health care was performed by two in 10
children.
A moderate extent of caring activities (total scores) was
reported by more than two in 10, and high or very high
extent by one in 10 (Table 3). More than one in 10
reported caring for more than 10 hours a week on
average.
Increased caring activities among children due to their
parents’ illness were reported by more than two in 10
parents, and one in 10 reported that the child had helped
them with personal care that they usually would have
done themselves. Only six out of 10 parents reported
access to home-based services, which was equal to the
number reporting that the child did not have to do caring
activates because healthcare- or home-based services per-
formed these activities.
Patterns of caring activities for different types of parental
illness
Children with MI and SA parents reported lower MACA
total scores compared to children with PI parents
(Table 3). Twenty-five per cent of children with MI and
SA parents reported more than 10 hours caring activities
a week, compared to 4% children with PI parents.
Increased caring activities by children because of par-
ent’s illnesses were reported by 28% and 21% of PI and
MI parents, respectively, compared to 3% of parents with
SA. Help with personal care that they usually would
have done themselves were reported by 14% and 7% of
PI and MI parents, and none of the parents with SA.
Only 9% and 4% of PI and MI parents, respectively,
reported that the child did not have to do caring activates
because healthcare- or home-based services performed
these activities, compared to none of the parents with
SA.
ANOVA (Table 4) showed that children with PI parents
scored significantly higher on domestic activities and emo-
tional care for their parents than children with SA par-
ents. However, there were no significant differences
between the parental illness groups in the total extent of
caring activities and other types of activities.
4E.K. Kallander et al.
©2017 Nordic College of Caring Science
Factors associated with nature and extent of caring activities
The regression analysis (Table 5) of the total extent of car-
ing activities showed that significantly associated factors
were higher external (LoC) and better social skills among
the children, and poorer physical health among the
parents.
Regression analyses for the different types of caring
activities showed different patterns of significantly associ-
ated factors. For financial and practical activities and sibling
care, none of the factors were significantly associated,
except for the number of siblings being associated with
higher extents of sibling care. However, these two models
had no explanatory power. For the more practical types
of caring activities, the significantly associated factors
among the children for domestic activities were being
female, older and better social skills. For household man-
agement, a higher external (LoC) and better social skills
among the children and poorer physical health among
the parents were the significant factors. For the more
intimate caring activities, the significantly associated fac-
tors were younger children’s age and higher external
(LoC) for personal care and better social skills among the
children for emotional care. There were significantly lower
extents of emotional care among children with MI par-
ents vs. children with PI parents. The health care model
had low power, but associated with the children’s higher
external (LoC) and lower parental income. Both models
for more practical and more intimate caring activities still
had a low explanatory power.
Table 1 Descriptive statistics for characteristics of the children and patient/parents
Variable Total Physical illness (PI) Mental illness (MI) Substance abuse (SA)
Children’s characteristics (N) 246 140 76 30
Age 12.45 (2.85) 12.74 (2.61) 11.97 (3.05) 12.33 (3.32)
Gender (Female %) 56.9% 56.4% 60.5% 50%
Number of siblings 1.63 (0.93) 1.49 (0.90) 1.76 (0.95) 1.90 (0.96)
External Locus of control 4.33 (2.08) 4.31 (2.12) 4.16 (2.02) 4.87 (2.04)
Social skills (standardised) 0.00 (0.99) 0.09 (0.84) 0.17 (1.20) 0.01 (1.07)
Patient/Parents demographic (N) 238 135 75 28
Age 42.62 (5.81) 44.25 (5.61) 40.08 (5.17) 41.57 (5.85)
Ethnicity (Norwegian %) 93.3% 94.8% 88% 100%
Gender (Female %) 72.7% 71.1% 85.3% 46.4%
Education
High 43.7% 54.8% 32% 21.4%
Middle 40.8% 34.8% 48% 50.0%
Low 15.5% 10.4% 20% 28.6%
Family income a year (NOK) 820 366.8 1 009 031.8 618 000.0 452 785.7
Very high 30.3% 39.3% 24.0% 3.6%
High 24.8% 28.9% 22.7% 10.7%
Middle 17.6% 15.6% 14.7% 35.7%
Low 16.0% 11.1% 21.3% 25.0%
Very low 11.3% 5.2% 17.3% 25.0%
Single-parent family (%) 17.2% 11.9% 20.0% 35.7%
Patients illness characteristics
Duration of illness (Years) 7.86 (10.9) 4.96 (11.25) 10.41 (8.80) 15.00 (9.60)
Perceived unpredictability (Yes %) 74.4% 81.5% 76.0% 35.7%
Health status (SF-8) 42.31 (6.26) 42.74 (6.05) 40.42 (6.14) 45.28 (6.18)
Physical Component Scale (PCS) 40.27 (10.10) 39.43 (10.52) 40.24 (9.76) 44.40 (7.95)
Mental Component Scale (MCS) 42.00 (11.67) 44.45 (10.16) 36.56 (12.33) 44.79 (12.13)
Mental health (SCL-10) 0.97 (0.73) 0.70 (0.58) 1.46 (0.76) 0.96 (0.65)
Anxiety 0.32 (0.28) 0.24 (0.23) 0.47 (0.30) 0.33 (0.25)
Depression 0.65 (0.49) 0.46 (0.38) 0.99 (0.51) 0.63 (0.42)
Parental capacity 1.25 (0.84) 1.28 (0.86) 1.43 (0.76) 0.67 (0.73)
Patients formal and informal care
Family cohesion (FACES) 40.83 (7.10) 42.08 (5.35) 39.40 (8.83) 38.61 (8.24)
Social support (ISEL) 25.88 (7.64) 26.66 (7.70) 24.01 (7.75) 27.41 (5.77)
Home-based services (%) 6.3% 8.1% 4.0% 3.6%
Hours practical help 1.73 1.45 3.33 0
Hours emotional support 0.53 0.36 1.00 1.00
Unless otherwise noted, estimates are mean (standard deviation).
Extent and nature of caring activities 5
©2017 Nordic College of Caring Science
Sample differences across parental illness groups
The descriptive data (Table 1) shows differences between
the three parental illness subgroups. Overall, the parents
were highly educated with high-income levels. However,
PI parents had significantly higher levels of education
and income, compared to MI and SA parent. MI parents
had significantly higher income compared to SA parents.
SA parents reported single-parent status significantly
more frequently than the other two illness groups.
MI parents reported significantly poorer mental health
compared to those with PI and SA. No significant differ-
ences in physical health were reported. SA parents
reported significantly higher parental capacity to take
care of their own children’s needs compared to PI and
MI parents.
The three illness groups also reported differences in
access to formal care such as home-based services and
informal care such as family cohesion and social support.
PI parents reported significantly higher extents of family
cohesion and social support from the network, compared
to MI and SA parents. PI parents also received formal
care such as practical home-based services more often
compared to parents in the other two illness groups.
Overall, 6% of the parents as patients received home-
based services for an average of 1.5 hours a week.
Table 2 Descriptive statistics of Extent and Nature of caring activities (N =246)
Items
a
Never N (%)
Some of the
time N (%)
A lot of the
time N (%)
Domestic activity
1. Clean your own bedroom 23 (9.3) 133 (54.1) 90 (36.6)
2. Clean other rooms 88 (35.8) 132 (53.7) 26 (10.6)
3. Wash up dishes or put dishes in a dishwasher 32 (13.0) 127 (51.6) 87 (35.4)
Household management
4. Decorate rooms 37 (15.0) 141 (57.3) 68 (27.6)
5.Take responsibility for shopping for food 116 (47.2) 110 (44.7) 20 (8.1)
6. Help with lifting or carrying heavy things 36 (14.6) 134 (54.5) 78 (30.9)
Financial and practical management
7. Help with financial matters such as dealing with bills, banking money, collecting benefits 199 (80.9) 43 (17.5) 4 (1.6)
8. Work part time to bring money in 211 (85.5) 29 (11.8) 6 (2.4)
9. Interpret, sign or use another communication system for the person you care for 220 (89.4) 20 (8.1) 6 (2.2)
Personal care
10. Help the person you care for to dress or undress 209 (85.0) 30 (12.2) 7 (2.8)
11. Help the person you care for to have a wash 225 (91.5) 19 (7.7) 2 (0.8)
12. Help the person you care for to have a bath or shower 237 (96.3) 8 (3.3) 1 (0.4)
Emotional care
13. Keep the person you care for company e.g. sitting with them, reading to them, talking to them 90 (36.6) 105 (42.7) 51 (20.7)
14. Keep an eye on the person you care for to make sure they are alright 89 (36.2) 98 (39.8) 59 (24.0)
15. Take the person you care for out e.g. for a walk or to see friends or relatives 170 (69.1) 70 (28.5) 6 (2.4)
Sibling care (n =221)
16. Take brothers or sisters to school 179 (81.0) 32 (14.5) 10 (4.5)
17. Look after brothers or sisters whilst another adult is near by 146 (66.1) 59 (26.7) 16 (7.2)
18. Look after brothers or sisters on your own 136 (61.5) 68 (30.8) 17 (7.7)
Health care (items from MACA-YC42)
24. Making sure that the one who is ill or you take care of takes their medicines 194 (78.9) 40 (16.3) 12 (4.9)
41. Talking with officials (e.g doctor or benefits office) about the person you care for 240 (97.6) 4 (1.6) 2 (0.8)
26. Take someone you live with to the doctors or hospital 219 (89.0) 25 (10.2) 2 (0.8)
a
Instructions; ‘Below are some jobs that children and youth do to help or to care of the ill parent at home. Think of what you have done the last
month’.
Table 3 Descriptive statistics of Extent and Hours spent on caring
activities
Variables
Range
(%)
Total
(%)
Physical
(%)
Mental
(%)
Substance
(%)
Maca extent (n =246)
Low 0–9 65.4 59.3 69.7 83.3
Moderate 10–13 24.4 29.3 22.4 6.7
High 14–17 5.7 4.3 7.9 6.7
Very high 18–36 4.5 7.1 3.3
Hours spent (n =84)
1–4 hours 59.5 63.5 60.0 41.7
5–9 hours 28.6 32.7 15.0 33.3
10–19 hours 9.5 3.8 20.0 16.7
20–49 hours 1.2 5.0
More than 50 1.2 8.3
6E.K. Kallander et al.
©2017 Nordic College of Caring Science
The children reported no significant differences in the
external LoC and social skills between parental illness
groups. The extents of social skills were similar to the normal
population for children and adolescents in Norway (50).
Discussion
Extent and nature of caring activities
In agreement with previous studies, the majority of chil-
dren with ill parents took on domestic activities, household
tasks and sibling care more often compared to findings for
the general population of children (2, 13, 25, 33, 34). Of
children with ill parents 60% reported cleaning rooms
other than their own, and 40% took on care for siblings,
compared to respectively 20% and 2% of their counter-
parts in the general Norwegian population, respectively
(33). Sibling care and cleaning seemed to be more than
three times more common among children with ill par-
ents. There are no national data on Norwegian children
who take on emotional care for their parents, but in Swe-
den, a country quite similar to Norway, emotional care for
parents was reported by 50% of children in a study using
MACA-YC18 (32), compared to 60% in our study. Emo-
tional care seemed to be a common caring activity inde-
pendent of present family illness. A less common caring
activity was personal care but was shown to be more than
three times as widespread among Norwegian children with
ill parents compared to Swedish school children (32).
Reports by ill parents confirmed findings from reports
of their children, in which the children performed
increasing amounts of caring activities, especially with
respect to personal care. This is a responsibility that
belongs to home-based services.
Patterns of caring activities across parental illness groups
Despite significant differences between the three parental
illness groups, there were no significant differences in
measured total extent of caring activities with respect to
the parent’s sociodemographic, illness characteristics,
family cohesion and the parent’s access to social support
network. The finding is in line with recent Australian
studies (28, 36), which indicate lack of enough large
sample sizes to provide sufficient power in the analysis of
differences associated with the three parental illness cate-
gories. In the current study, the sample size of children
with MI parents was nearly three times higher than chil-
dren with SA parents, but only half of the sample size of
children with PI parents, as a result of recruitment chal-
lenges from clinicians and parental patients. The children
of PI parents reported providing significantly more
domestic and emotional care than children with MI and
SA parents. These two groups of children reported more
hours spent caregiving compared to children with PI par-
ents, and compared to the general population (33). The
findings may question the validity of the measure of
MACAs sensitivity for assessment of caring activities per-
formed by children with MI and SA parents.
The findings in which there were no significantly
higher extents of personal care among children with PI
parents compared to children with MI parents are oppo-
site to findings from previous studies (28, 35). There
were significant differences between children of parents
with PI and children with SA parents regarding the
extent of domestic and emotional care. However, our
study did not support the previous findings with a signifi-
cantly higher extent of emotional care among children
with MI parents compared to children with PI parents
(35).
Factors associated with nature and extent of caring activities
The demographic variables of the children significantly
associated with domestic caring activities were being
female and older among this group of children. The find-
ings are in agreement with previous studies, especially
regarding domestic activities (14, 28, 35). In our personal
Table 4 Extent and differences (ANOVA) in dimensions of caring activities (MACA) for types of parental illness
Variables
Total PI MI SA PI/MI MI/SA PI/SA
RangeMean (SD) Mean (SD) Mean (SD) Mean (SD) p p p
Domestic 3.24 (1.43) 3.40 (1.34) 3.15 (1.59) 2.70 (1.29) 0.65 0.40 0.04* 0–6
Household 2.89 (1.31) 2.95 (1.26) 2.80 (1.34) 2.86 (1.50) 1.00 1.00 1.00 0–6
Finance/Pract. 0.50 (0.86) 0.50 (0.89) 0.40 (0.69) 0.76 (1.07) 1.00 0.16 0.37 0–6
Personal 0.31 (0.80) 0.38 (0.89) 0.22 (0.62) 0.20 (0.76) 0.47 1.00 0.75 0–6
Emotional 2.05 (1.59) 2.31 (1.55) 1.82 (1.56) 1.40 (1.63) 0.09 0.62 0.01** 0–6
Sibling 1.10 (1.45) 1.07 (1.49) 1.02 (1.31) 1.48 (1.60) 1.00 0.51 0.55 0–6
Health 0.41 (0.84) 0.44 (0.80) 0.33 (0.70) 0.47 (1.25) 1.00 1.00 1.00 0–6
Total score 10.00 (4.16) 10.52 (4.18) 9.35 (4.00) 9.26 (4.17) 0.14 1.00 0.39 0–24
PI, physical illness; MI, mental illness; SA, substance abuse.
*p<0.05, **p<0.01.
Extent and nature of caring activities 7
©2017 Nordic College of Caring Science
Table 5 Multiple regression analysis of associated factors of dimensions of children’s caring activities (MACA)
Variable
Total score Domestic Household Financial Personal Emotional Siblings (n =221) Health
ßp ßp ßpß pßpßp ßpßp
Child characteristics
Age 0.051 0.448 0.135 0.046* 0.024 0.729 0.042 0.554 0.173 0.012* 0.118 0.088 0.090 0.232 0.056 0.424
Gender 0.017 0.797 0.176 0.006* 0.102 0.122 0.077 0.254 0.097 0.137 0.007 914 0.060 0.351 0.002 0.980
Number of siblings 0.065 0.343 0.002 0.980 0.067 0.341 0.009 0.899 0.129 0.062 0.038 0.586 0.150 0.047* 0.106 0.137
Locus of control (LoC) 0.175 0.011* 0.121 0.077 0.141 0.045* 0.138 0.056 0.195 0.005* 0.028 0.716 0.038 0.621 0.203 0.005*
Social skills (stand. v) 0.270 0.000*** 0.289 0.000*** 0.227 0.002** 0.035 0.631 0.092 0.194 0.156 0.029* 0.003 0.971 0.066 0.365
Patient/parents’ demographics
Gender 0.077 0.243 0.013 0.838 0.073 0.284 0.121 0.082 0.048 0.477 0.039 0.557 0.049 0.511 0.004 0.952
Education 0.018 0.793 0.003 0.971 0.053 0.465 0.011 0.880 0.097 0.175 0.083 0.244 0.012 0.878 0.099 0.178
Family income 0.033 0.742 0.090 0.361 0.098 0.335 0.052 0.617 0.167 0.096 0.054 0.592 0.062 0.561 0.237 0.022*
Single-parent family 0.005 0.958 0.020 0.830 0.087 0.356 0.155 0.111 0.176 0.062 0.126 0.181 0.003 0.978 0.164 0.089
Patients illness characteristics
Mental vs. physical .146 0.068 0.026 0.739 0.052 0.524 0.092 0.270 0.042 0.598 0.176 0.030* 0.040 0.647 0.093 0.263
Substance vs. physical 0.096 0.222 0.109 0.165 0.056 0.487 0.046 0.581 0.066 0.406 0.154 0.055 0.127 0.150 0.078 0.340
Duration of illness (years) 0.044 0.527 0.027 0.702 0.045 0.530 0.009 0.900 0.070 0.321 0.102 0.152 0.019 0.801 0.005 0.941
Perceived unpredictability 0.069 0.345 0.077 0.288 0.052 0.490 0.092 0.232 0.066 0.371 0.031 0.681 0.003 0.966 0.077 0.312
Health status (SF-8)
Physical Comp. Scale 0.141 0.041* 0.048 0.480 0.188 0.008** 0.014 0.848 0.085 0.227 0.084 0.232 0.052 0.501 0.071 0.324
Mental Comp. Scale 0.129 0.220 0.003 0.979 0.041 0.707 0.017 0.878 0.054 0.614 0.204 0.057 0.140 0.237 0.021 0.849
Mental health (SCL-10) 0.027 0.811 0.050 0.655 0.105 0.367 0.108 0.367 0.058 0.616 0.004 0.969 0.135 0.291 0.072 0.541
Parental capacity 0.038 0.618 0.132 0.086 0.016 0.836 0.099 0.222 0.031 0.689 0.091 0.244 0.098 0.253 0.026 0.749
Patients formal and informal care
Family cohesion (FACEIII) 0.085 0.222 0.033 0.634 0.056 0.427 0.024 0.744 0.003 0.698 0.119 0.093 0.150 0.060 0.011 0.882
Social support (ISEL-12) 0.024 0.714 0.065 0.320 0.067 0.391 0.108 0.119 0.014 0.839 0.074 0.272 0.060 0.482 0.013 0.852
Home-based services .025 0.711 0.038 0.572 0.031 0.521 0.040 0.583 0.088 0.207 0.015 0.824 0.104 0.162 0.094 0.189
R
2
=0.18 R
2
=0.19 R
2
=0.14 R
2
=0.10 R
2
=0.16 R
2
=0.16 R
2
=0.10 R
2
=0.11
Adjusted R
2
=0.10 Adjusted R
2
=0.11 Adjusted R
2
=0.06 Adjusted R
2
=0.01 Adjusted R
2
=0.08 Adjusted R
2
=0.07 Adjusted R
2
=0.01 Adjusted R
2
=0.03
*p<0.05, **p<0.01, ***p<0.000.
8E.K. Kallander et al.
©2017 Nordic College of Caring Science
care findings, younger age in children was significantly
associated with higher extents, in agreement with a
recent Australian study (2).
Although there were no significant differences in
extent of social skills and external LoC between the chil-
dren in the three parental illness groups, these two fac-
tors significantly impacted children’s caring activities.
Social skills are learned acceptable behaviour. These
skills are considered indicators of social competence
allowing individual judgement on how to perform a
social task adequately, and linked to academic achieve-
ment (45, 46). In our study, social skills were positively
associated with higher extent of caring activities, domes-
tic- and household activities, and emotional care.
Whether the children took on caring activities due to
good social skills, or if they developed social skills as a
result of caring remain unclear.
Parental illness or SA may place children into a context
that they cannot control and might impact on the exter-
nal LoC, which is understood as their perceptions of
event outcomes that they cannot control (61–63). In our
study, external LoC was positively associated with higher
extent of caring activities, and especially household
chores, personal care and health care. It seemed as the
children’s efforts to assume caring activities was a way of
trying to cope or control a situation that was out of their
control.
In contrast to previous studies’ findings, such as moth-
ers as the caregiving recipient (6, 13, 20, 28, 35), in sin-
gle-parent, and low-income household (2, 7, 13, 17, 27,
36), the parents demographics did not have a significant
impact on the children’s caring activities. Considering the
low explanation power, the only exception was the sig-
nificant association between the children’s responsibility
for health care and the families’ low income. Illness-
related characteristics, such as different types of parental ill-
nesses, were not associated with higher extents of care
(28, 35). Only poorer physical health among the parents,
independent of type of illness, significantly increased the
extent of caring activities and household tasks. The find-
ings that PI caused a decrease in the children’s emotional
care for the parent are opposite to findings from previous
studies (28, 35).
The previous study findings of importance of formal
and informal care for ill parents did not associate signifi-
cantly. The restricted sample of parents with home-based
services and the amount of hours that the parents’
received healthcare services gave no significant impact
on children’s caring’s activities. Parents’ access to home-
based services was limited, despite Norwegian legislation
and national guidelines that require healthcare personnel
to identify such needs and refer the family’s needs to
adequate community services (30). The parents reported
overall high social support levels, which in our opinion,
points in the direction of a biased sample. As a result,
family cohesion and social support did not have a signifi-
cant impact on extent and nature of caring activities in
our study sample.
Strengths and limitations
The major strengths of our study are the combination of
data from children and the ill parents, the inclusion of
the three different patients groups, the extensive recruit-
ment from specialised health services in five health trusts
covering 34% of the Norwegian population, the efforts to
recruit a representative sample, the use of well-estab-
lished questionnaires and almost no missing responses,
which can be attributed to the online data collection
requiring responses to each question.
There are a few validated measurements for the extent
and nature of caring activities. Variations of caring activi-
ties in the different measurements make it difficult to
compare prevalence across measures, and two studies
adjusted the measure MACA-YC18. Inconsistent use of
measures made it hard to compare our results with
results from other studies.
Our sample differed from other studies because of
recruitment of children via their parents being patients.
Most studies recruit informants from intervention pro-
jects for young carer, including schools, support associa-
tions, societies or websites. Other studies used several
recruitment methods. Different sampling procedures also
made it difficult to compare and to estimate reliable
prevalence measurements.
The limitations included unknown inclusion rate of
patients/families eligible for the study and indications of
a partially skewed sample with lower inclusion rates
regarding severity of illness across the three groups. An
unknown and probably larger group of outpatients in
mental health clinics were not informed of the study
according to procedures because the therapists forgot,
were reluctant to inform the patient, or thought the
patient was too ill to participate. Many patients in sub-
stance use disorder clinics were not eligible for the study
because they had lost custody of their children, and the
present state of patient health with drug abuse was prob-
ably better than usual since they were in for a period
with treatment. Due to these limitations, our study prob-
ably shows a more positive image of the families’ situa-
tion and the children’s extent and nature of caring
activities.
Conclusion and implications
Better social skills enabled children to successfully pro-
vide social tasks as caring activities, but it seems like the
caring responsibility left them with the feeling of lack of
control. To promote coping and prevent children with ill
parents becoming young carers there is a need for
Extent and nature of caring activities 9
©2017 Nordic College of Caring Science
increased access to flexible home-based services for par-
ents and families that are adapted to the illness types.
Acknowledgements
We would like to acknowledge and thank all the children
and youth and their parents as patients who participated in
this study. We also would like to thank all institutions who
made it possible for us to recruit them. These institutions
include Akershus University Hospital, Vestre Viken Hospital
Trust, Sørlandet Hospital Health Enterprise (SSHF), Helse
Stavanger University Hospital, Rogaland A-Senter, Nord-
land County Hospital. Further, we would like to express
our gratitude to the coordinators, research assistants and
PhD students who collected the data. We would also like
to thank the Regional Center for Child and Adolescent
Mental Health, Eastern and Southern Norway for technical
support in collection of data and the network Barns Beste
(Children’s Best Interest) for contributing to that the chil-
dren’s interests were taken well care of in this study.
Author contributions
EKK, BW, KS, EK, TR participated in the design of the
study. EKK, BW, KS, EK performed data collection. EKK
performed the statistical analysis. EKK drafted the manu-
script, analysis and interpretation of data. BW, SB, BVR,
KHB, KS, AF, EK helped in drafting the manuscript,
analysis and interpretation of data. SB, BW, KHB co-
supervised the draft of the manuscript. TR conceived the
study, its design and research protocol and supervised the
draft of the manuscript. All authors revised and approved
the final manuscript.
Ethical approval
The study was approved by the Regional Committee on
Medical and Health Research Ethics South-East (reg.no.
2012/1176) and by the Privacy Ombudsman at each of
the five health authorities taking part in the study.
Funding
This study was funded by the Research Council of Nor-
way (ID: 213477), additional funding by the Norwegian
Directorate of Health, and the participating partners in
the study. The authors declare that they have no conflict
of interest.
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