________________________________________
The following chart should help you with parenting styles. It was adapted and changed a bit from Parent
Child Relations, 2nd ed., by Phyllis Heath (Saddle River, NJ: Pearson, 2009), p. 29.
Characteristics of Five Parenting Styles
_____________________________________________________________________________________
Parenting Style
Emotional tone
Parental support
Parental Control
Common outcomes
________________________________________________________________________________________
Authoritative:
warm
high
Moderate
highest levels of academic
democratic, family
strictness
achievement, cooperative with
meetings
peers and family, psychosocial
maturity, less likely to have
behavior problems.
Authoritarian:
cold
low
Very strict,
Dependent, passive and
Dictatorship, “my
physical
conforming, low self esteem, turn
way or the
punishment
to parents for answers. Have never
highway”
been trusted. Are more likely to
turn to crime and delinquency than
children of authoritative parents.
Permissive or
warm
high
Very little control
Low academic achievement, poor
Indulgent:
and no standards
impulse control, immaturity, less
“whatever”
are set
socially responsible, do whatever
peers suggest
Traditional:
warm
high
Very strict
Good racial and cultural identity
(like your
outcomes, good problem solving
grandmother)
skills, strong attachment to family,
excellent type of parenting when
living in a dangerous neighborhood
Indifferent:
cold
Very little or no
Very little control
Peer rejection, poor academic
Neglectful
parental support
or no control
performance, higher rates of
(parent never there
delinquency, drug, and alcohol
and uncaring)
problems, earlier sexual
involvement.
___________________________________________________________________________________
Original Article
doi:10.1111/j.1365-2214.2007.00790.x
Parenting children requiring complex care:
a journey through time
H. MacDonald* and P. Callery†
*University of New Brunswick, Fredericton, Canada, and
†School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK
Accepted for publication 23 April 2007
Abstract
Keywords
developmental map,
parental needs, parenting
children requiring
complex care, respite
Correspondence:
Heather MacDonald, RN,
MScN, PhD, University of
New Brunswick, PO Box
4400, Fredericton, NB,
Canada, E3A 5A4
E-mail: heatherm@unb.ca
Background Parents of children requiring complex care provide intense and demanding care in
their homes. Unlike professionals who provide similar care in institutions, parents may not receive
regular breaks from care giving. As a result, parents, over time, experience health and social
consequences related to care giving. Respite care, one form of a break from care giving, is
frequently cited as an unmet need by such parents.
Method Given the paucity of literature on the impact of care giving over time, an ethnographic
approach that involved in-depth interviews, participant observation, eco-maps, and document
review was used. Parents of children requiring complex care, nurses and social workers participated
in the study.
Results A developmental map of care giving over time was constructed from the parents’
retrospective accounts of parenting a child requiring complex care. The developmental map
describes the trajectory of care for the children from infancy through young adulthood and the
parents’ evolving needs for respite care.
Conclusion Existing literature focuses on the day-to-day experiences of parents, who are carers,
rather than their experiences over time. As parents of children requiring complex care are providing
care from infancy through the death of either child or parent, respite needs will change. This
developmental map identifies how a group of parents reported these changes in care giving and
their perceived needs for respite care.
Introduction
The transition of children requiring complex care from institution to home started in the 1980s and continues today as a
means of closing institutional beds and being more costeffective (Kirk & Glendinning 1998; McNally et al. 1999). Such
a move is also believed to be more developmentally normal for
the children and their families. There are health and social consequences for parents giving long-term, intensive care in the
home; care that would previously have been provided in institutions by professionals (Baldwin & Glendinning 1983; Leonard
© 2007 The Authors
Journal compilation © 2007 Blackwell Publishing Ltd
et al. 1993; Dowdell 2004; Emond & Eaton 2004; Abbott et al.
2005; Hewitt-Taylor 2005; Barlow et al. 2006). One of the most
important consequences is the potential for parental fatigue and
the need for a break from care giving (Emond & Eaton 2004;
Hewitt-Taylor 2005; Thurgate 2005; Johnson et al. 2005).
To date, research has focused on the day-to-day experiences
of parents caring for children requiring complex care (Gravelle
1997; Noyes 1999; Dobson et al. 2001; Olsen & Maslin-Prothero
2001) with less attention on the impact of caring over time.
There has been limited discussion in the literature of the changing needs of children as they develop, and the associated
207
208
H. MacDonald and P. Callery
changes in parents’ views about respite. This paper presents a
developmental map of care giving over time that was constructed from parents’ retrospective accounts of parenting a
child requiring complex care. The developmental map describes
the trajectory of care for children with complex needs from
infancy through young adulthood and the parents evolving
need for respite care.
Methods
The developmental map reported in this paper was one of the
findings from a study investigating respite for parents of children requiring complex care (MacDonald, unpublished Thesis,
University of Manchester, 2006). The study used an ethnographic approach that involved in-depth interviews, participant
observation, eco-maps and document review.
Following ethical approval from four Local Research Ethics
Committees, participants were recruited using a purposive sampling approach. Nineteen mothers (four grandmothers) and
seven fathers (three grandfathers) were recruited from respite
facilities and community databases of ‘special needs children’.
Thirteen nurses and four social workers were recruited from
respite facilities, local authorities, hospital-based respite units
and ‘special needs’ schools. In total, 43 self-selected individuals
participated in the study.
The children, whose parents participated in the study, had a
variety of diagnosis. However, the children were selected by
one of the investigators (H.M.)based on the care they required
rather than their diagnoses. Care needs crossed diagnostic
boundaries. These care needs included: administration of
complex medications, suctioning, special diets, enteral feedings, bowel care, oxygen therapy and catheterization. The children were physically dependent on others for activities of daily
living including mobility, speech, basic hygiene, feeding and
toileting – activities where independence would typically be
achieved by his/her developmental age. Although it was not
one of the inclusion criteria, all of the children had major cognitive impairments.
The participants and the interviewer (first author) mutually
agreed on the interview setting. All parents were interviewed in
their homes and all nurses and social workers were interviewed
in their place of work. The interviews followed a conversational
style in which participants were encouraged to talk about their
experiences with respite care. A topic guide was used to prompt
discussion of specific respite issues. In-depth interviews of
1–2-h duration were audio-taped, transcribed and coded. All
data were stored and coded using a computerized qualitative
data analysis programme, NUD*IST 6 (N6).
Table 1. Initial coding
Codes using participants’ words:
Feeling desperate
Stop the world I want to get off
It got really bad for us
It gave family breathing space
Need to re-charge batteries
Initial reluctance
Need to give our heads a break
Initially, the data were reduced into descriptive codes. These
descriptive codes were derived from participants’ actual words
or phrases, and rather than simply being used as labels, they
both labelled and provided linkages between the data and my
ideas (Morse & Richards 2002). Table 1 provides an example of
the coding derived from parents’ responses to my question: ‘tell
me about your feelings about respite’. Initially these were coded
as free nodes (a file within N6 in which codes were simply listed
and not placed into the hierarchical structure).
Careful examination and questioning of the free nodes or
codes ensued in order to identify possible connections. This
questioning involved moving back into the data to reflect on the
code, both within its greater context and up out of the data to
possible linkages. Sample questioning included: are these feelings limited to before ever receiving respite or did these feelings
arise every time a break was due? Did both mothers and fathers
experience these feelings? How does initial reluctance fit with
these feelings about need?
The descriptive codes were then organized into categories
from which explanatory schemas were formulated. The code
‘initial reluctance’ seemed different from the other codes. As the
data analysis was concurrent with data collection, it influenced
the ongoing revision of topic guides. Therefore, on subsequent
interviews, participants were asked what respite was like when
they were first provided the service compared with the present
time. This type of questioning that requires the participants to
reflect upon and talk about now and then is what Spradley
(1979) refers to as contrast questions. Examination of the data
and constant comparison led to the development of a coding
frame.
Data were examined in their context (‘thick description’). To
achieve thick description the data (interviews, observations and
field notes) were summarized, synthesized and extracted such
that they reflected the essential components of the context
(Morse & Richards 2002). Using the example of the topic node
cited previously, ‘feelings about a break’ was looked for across all
sources of data and then to the literature ‘needs for a break’ and
‘benefits of respite’ to make any theoretical links. The multiple
sources of data and the different approaches to analysis added
© 2007 The Authors
Journal compilation © 2007 Blackwell Publishing Ltd, Child: care, health and development, 34, 2, 207–213
Journey through time
depth and dimension to the phenomenon under study. Findings
related to care giving over time and the need for respite care
follow.
Findings: a developmental map of caring for a child
requiring complex care
So you tend to sort of have a mental image of yourself
drifting along just looking after a baby really, until she
changed schools, secondary schools, and I suddenly realized well she’s not a little girl and a baby anymore, you
know she’s a teenager now. (Mother 14S Lines 350–354)
Parents of children requiring complex care described their role
in care giving as a process that began with the birth of their child
with an illness or disability and continued indefinitely. ‘And you
know, [I’ve] sort of grown up with this child with a disability.
Yes, I mean I’ve never known any different, that’s sort of how
she was when she was born’ (Mother 14S). Considerable similarity was noted between parents’ descriptions of their experiences, with only a single parent presenting as an alternate case.
This parent was actually the child’s grandparent. As her son had
died, the grandmother had invested her caring with a particular
moral and emotional context that may explain the differences in
her account. Commonalities in experiences crossed categorical
boundaries. As parents reflected on their experiences there were
identifiable strands that were best captured in a map. The map
identifies broad periods of transition for children requiring
complex care and the corresponding response from parents.
According to the parents, nurses and social workers, the need for
respite evolved over time. The parents vividly recounted their
evolution from initial reluctance to use respite services, to feelings of desperation for a break. Although parents’ retrospective
accounts relied on memories that can alter over time, the
pattern that emerged was consistent with nurses’ and social
workers’ descriptions of the changes in children’s needs and
parents’ responses over time.
The developmental map illustrates how developmental
changes in the children are intricately related and cumulative
in terms of parental needs, services and policies. Parents
explained their care giving in terms of key developmental
transitions experienced by their children. These developmental
transitions were broader than established developmental categories but explained transitions for this selected group and
included infancy, starting school, infant to junior school and
high school through young adulthood. At each transitional
point, the child requiring complex care changed to a new
environment, changed in physical growth, but continued to
209
require care that was consistent with infancy. The transitions
were developmental and predictable. Throughout the child’s
developmental transitions, the parents were responsible for
meeting the care needs of the children. The care needs of
the child created psychosocial needs for the parents along
with environmental and home needs. Table 2 illustrates the
developmental transitions experienced by the children and the
implications of these changes for parents. The map demonstrates that parental needs, like the transitions, were repeated
across the sample, so they may be predictable and assist service
providers to anticipate needs and plan supports. Using the
anticipated needs as a guide, service providers could then
work with families in developing an individualized plan for
support. As a result of the aforementioned children’s and,
therefore concomitant parents’ needs, the families were in
contact with support services. In Table 2, the key formal and
informal supports are documented to correspond with the
developmental transitions along with parents’ and professionals’ experiences with respite services. Finally, the policies that
impact on each developmental phase are presented.
Infancy
Infancy, the initial stage of care giving that parents described, is
a period when the child’s special needs are obscured by the
normal needs of all infants. ‘I’ve never known any different
because she’s been like that since a baby, and people expect
babies to keep you awake at night’ (Mother 14S Lines 280–281).
Disabilities and care needs are disguised by the characteristic
dependency associated with the infant stage of development.
During this early phase of caring, parents received support from
family and friends who were comfortable in assisting, for much
of the care fit with ‘normal’ infant care. Parents suggested that
health visitors focused on the typical aspects of infant care and
this allowed parents to uphold an appearance of normalcy.
Healthcare professionals recognized the need for intervention at
this early stage in order to prevent crises later on, but limited
resources prevented them from doing so. Policy statements
influencing the care and services available to such parents identified these as ‘parents in need’ but unless parents requested
intervention, intervention was not forthcoming. There was no
legal requirement for the development of a registry of parents
who had children requiring complex care, and information
about respite was not readily available.
Parents described a continuation of infant care until their
children started school, at which time it became much more
obvious that their children were different. During this stage
© 2007 The Authors
Journal compilation © 2007 Blackwell Publishing Ltd, Child: care, health and development, 34, 2, 207–213
Infancy
Normal infant care plus
technology. Frequent illness.
Physical regime additional but
not onerous.
Accommodating special needs
within normality. Watching
development and recognizing
delays. Adult relationship
tensions.
Infant supplies. Safety measures
for young child.
Grandparents, neighbours, friends
within ‘normal’ range of infant
care. Hospitalization for
frequent illnesses.
Health Visitors (HV) focus on
normal infant care (perceived
lack of confidence in additional
aspects).‘Parental collusion’
with HV normalization
Perceived importance of this
phase to prevent later crisis but
limited resources to intervene.
Parental roles and responsibility.
Children in need. Focus on care
in home (principles).
Influencing factors
Care needs of child
Psychosocial responses of families
Environmental and home
adaptations
Family experiences of support
Parents’ experiences of services
Professionals experiences of
services
Policy statements influencing care
and services
Table 2. A developmental map: caring for a child requiring complex care
© 2007 The Authors
Journal compilation © 2007 Blackwell Publishing Ltd, Child: care, health and development, 34, 2, 207–213
Statementing. Children Act; health
and safety of paid carers does
not apply to parental carers.
Formalized care (school)
highlights differences. Tensions
in kin/friend: end infant care
and adaptation to age. Child
does not have friends of same
age. Constant presence of child.
Play schemes viewed as
childminding and vulnerable to
cuts therefore unreliable. Entrée
to formal support limited.
Waiting. Some using respite.
Initial reluctance. Concerns
about ‘knowing the carer’.
Vigilance. Trust versus Mistrust.
Contact with school nurse
begins.
Adopt diagnostic approach
(i.e. denial, grieving). Status
of school nurse (care
entrepreneurs, continuity).
Planning. Fear of future for child.
Fear of loss of support and
services. Fear of long-term
future for child without parents.
Refers to caring as managing
business.
Continuance of care but
increasingly intense. Feelings of
desperation. Loss of identity
and recognition of lost dreams.
Feelings of entitlement towards
respite. Caring is a job.
Concerns about quality.
Fragmentation telling story
over and over at assessment, no
follow up, lacking continuity.
Need to demand or negotiate.
Respite means overnight stay.
Need a break but miss child
and worry about quality of
care. Later, enjoys respite and
feels dependent on it.
Play schemes viewed as respite.
Social workers concerned that
assessment raises expectations.
Rely on parents. Perceived
parental loss of identity.
Assessment mandatory but
provision not.
Informal disappearing due to
growth of child and ageing
grandparents (some emotional
but no physical support).
Respite important.
Age 18 change to adult status.
Inequity as a result of parental
articulateness. Compensation
driven by being fair.
Feelings of inequity a lever to
obtain more services. Flexibility
and appropriateness a high
priority. Parent enjoys respite.
Fear losing services and
protects what they have.
Home institutional-like. Organized
around child’s needs and
equipment.
Reliant on services. Overnight
respite important.
Change to adult services at 18
years. Care needs procedural,
timely, very intense, dominate
family life
Growing bigger. Infant needs
highly visible. Intense
supervision. Continuing
dependence
Physical regimen more
burdensome due to growth.
Fewer illnesses. Appearance
changing with obvious
differences.
Beginning acceptance. Maternal
reports of feelings of
depression loneliness, isolation
and fatigue. No time for other
children. Constant
responsibility. Caring is
full-time work.
Continuance of safety and
supplies
Lifts, hoists, special fluids. Highly
organized. Institutional-like
High school – young adulthood
Infant-junior school
Starting school
210
H. MacDonald and P. Callery
Journey through time
known as ‘starting school’ parents reported that care giving was
increasingly onerous. Mary explained the increasing difficulty
in caring for her daughter:
I can’t imagine giving up caring for her, although I’m sure
a time will come as she gets older, I mean she’s a lot
heavier now, she’s quite a big girl, she weighs about eight
stone and I do find that moving around, even changing a
nappy, is getting more and more difficult. It’s not like
lifting a baby’s legs up anymore. She’s heavy physically;
she’s become more of a problem. (Mother 07 Lines
180–185)
Parents experienced fatigue, depression, boredom, isolation
and an inability to work outside of the home. The continuation
of infant care combined with the special needs made it difficult
for parents to allocate time to siblings. Family and friends were
less involved. Jackie commented: ‘Coz you don’t get family or
anybody, people say when they’re babies, and they put them in
a buggy, oh I’ll take him off you, but now that he’s older, like
talking, they don’t want to know’ (Mother 01L Lines 208–211).
Some parents accessed respite at this time but most were reluctant to seek such formal support. They were vigilant in their care
giving and experienced difficulty in acknowledging that they
needed help in caring for their own children.
Parents utilized play schemes but associated these with ‘childminding’ rather than respite. At this time, parents had their first
interaction with school nurses. Meanwhile, health professionals
used diagnostic terms such as ‘denial’ and ‘grieving’ to describe
parents. Parents expressed frustration with the ambiguities in
policies that supported the health and safety of paid workers but
not for parents.
Infant-junior school
Moving to ‘infant-junior school’ highlighted the next major
transition for the children. The children were growing bigger
and infant care needs were highly visible. Intense supervision
was required. Parents described feelings of desperation, a loss of
identity and recognition of their lost dreams. Family homes
became institutional-like with lifts, hoists, special chairs, special
fluids and supplies.
Space in the home was limited and therefore highly organized. Informal support was disappearing. In some cases, family
and friends were uncomfortable caring for children with
complex care needs, while in other cases the parents did not
want to impose on them. Mary explained:
they would say, oh God no, I can’t possibly do that, and it
was a lot of people’s attitude, and you forget that some
211
people that aren’t used to dealing with children like that,
are frightened that they’re going to do something wrong.
And even now, tube feeding, you know, and a lot of our
family wouldn’t give her a tube feed, and naturally it’s a
lot easier and safer than feeding her, when she was
choking. (Mother 07 Lines 399–408)
Parents typically began to seek formal support in the form of
respite at this time. It took them time to develop trust in outside
carers but their desperation for a break triumphed over their
feelings of guilt and caution. Claire described the tension
parents experienced between needing a break and feelings of
guilt and caution:
About 9 [started respite]. She hated it, and she wouldn’t
eat or drink. She constantly vomited, she was only ever in
for one night, and although it had got to the stage then
that Tom and I were getting really tired, and we knew she
hated it, and we knew she was going to make herself
vomit and she wouldn’t eat, and the next day we spent the
whole day giving her drinks to re-hydrate her. We just
needed a night a month off. I know it sounds bad
. . . Quite a few times we felt like saying we’re just not
bringing her back. But you go through another month,
and you’ll be absolutely wrecked, you know tired out.
(Mother 14S Lines 505–528)
Parents reported fragmentation of respite services. They
became frustrated with having to repeat their story. Healthcare
professionals found themselves in a dilemma. National policies
mandated an assessment of families within a defined time
frame; yet, limited resources prevented assigning the family
respite care. Healthcare professionals believed that the assessment gave parents a sense of false hope when the reality was that
they could be on a waiting list for years. Another tension arose
out of differing opinions. Parents equated respite to an overnight break where their children left home whereas some
healthcare professionals recognized play schemes, short (2–3 h)
breaks and in-home assistance as respite.
High school through young adulthood
The final stage ‘high school through young adulthood’ was discernible by the increased intensity of the care giving. Family life
evolved around the care of the child. The home was highly
organized. Parents were using respite services but were increasingly worried about the future care of their children. At age 18,
care services changed and both parents and healthcare profes-
© 2007 The Authors
Journal compilation © 2007 Blackwell Publishing Ltd, Child: care, health and development, 34, 2, 207–213
212
H. MacDonald and P. Callery
sionals reported this as a period where there existed a huge gap
in services. Joe expressed the typical parental concern about the
future:
I think the diligence is borne out of, she’s our child, it’s
borne out of affection and I don’t think you can ever
hope to replicate that in a respite environment or a hospital environment or in a living residential care environment. We’re looking ahead. Hannah’s 15 now, what’s the
situation going to be like when she’s eighteen, twenty,
twenty-one, are we going to look after her forever or are
we going to let go, and that’s quite sad. (Father 10 Lines
363–373)
Creation of the developmental map enabled a portrayal of
the broad illness trajectory, the consequences of care giving over
time and services experienced by the parents.
Discussion
In this paper, a developmental map presented describes the
trajectory of care for a group of children with complex needs.
Previous studies have examined the course of a chronic illness
over time (Gravelle 1997), the transition from child to adult
services (Beresford 2004), the difficulties in acquiring respite
(Beresford 1996; Olsen & Maslin-Prothero 2001) and the
meaning of respite (MacDonald & Callery 2004). Respite has
been discussed as an unmet need, but there has been limited
consideration of how the need for respite may change over time.
As in many cases, parents are caring for children with complex
needs from infancy through the death of either child or parent,
it is to be expected that respite needs will change as children
develop, parents themselves grow older and their family circumstances change. The developmental map of caring for a child
requiring complex care outlines parents’ retrospective reports
of these changes in care giving.
The developmental map is organized around the care needs
of the child, the psychosocial responses of families, environmental and home adaptations, family experiences of supports,
parents’ and professionals’ experiences of services and policy
statements influencing care and services as children progress
through four broad developmental stages. Inclusion of the children, their parents, professionals and policies, and the interplay
between each of these factors in the matrix of the map allows for
a more complete overview of transitions that occur while caring
for children requiring complex care at home. Such a comprehensive overview of caring for children requiring complex care
may provide the basis for a holistic approach to the provision
of care.
The developmental map illustrates how parents’ views on
respite change over time. Timing is a factor that impacts on the
provision of appropriate respite care. Uptake of respite services
by parents closely follows the development of the children.
During infancy, when care giving is consistent with the norms
of infant care and when the children are physically smaller, short
breaks provided by family, friends and outside agencies were
reported by parents as being beneficial. Later, as the children
grew bigger and heavier, care giving became more physically
demanding. As a result of the physically demanding care and the
ageing of relatives (grandparents), family support with physical
elements of care diminished. These factors were cumulative,
resulting in parents who were physically and mentally exhausted
and who equated respite with survival (MacDonald & Callery
2004). As a result, short breaks were no longer adequate in
giving them a break. At this point, parents described out-ofhome, overnight respite as a necessity.
As noted, the developmental map links with a number of
policy statements that influence parents caring for children
requiring complex care. Nurses and social workers, involved in
respite services, perceived the policies as sometimes being difficult to implement without generating false hope for the parents.
For example, the Quality Protects (DOH 1999) policy that mandated a parental assessment within 7 days was perceived as being
misleading to parents. The initial assessment might lead parents
to believe that respite care was imminent when in actuality they
could be on a waiting list for respite for months or years.
Parents may benefit from regular reviews that identify their
changing needs and assist in matching resources to these needs.
Care plans, based upon the developmental map, could develop
along with the family experience in care giving. In that way,
resources may be better matched to parents’ needs and in many
cases service needs could be anticipated.
Indirectly, parents may benefit from professionals and services who are assigned to them soon after presentation of their
children’s special needs. Early intervention and continuity
would enable the professionals to work from knowledge of the
full trajectory of care giving rather than from a given point in
time. Nurses and social workers could use this knowledge to
provide parents with anticipatory guidance as they approached
transitions in their children’s developmental stages and the
resulting care needs. While parents in the study did not ask for
forecasts of their future in caring for children requiring complex
care, they did express frustrations about the contingent nature
of the respite supports they received. The developmental map
may provide a framework for discussing parents’ changing
needs over time and how services might be adapted to meet
them.
© 2007 The Authors
Journal compilation © 2007 Blackwell Publishing Ltd, Child: care, health and development, 34, 2, 207–213
Journey through time
Conclusion
A developmental map of care giving was developed from a study
investigating respite for parents of children requiring complex
care. The map (Table 2) identifies broad periods of transition
for the ‘child in need’ and the corresponding impact on the
parents who are the carers. According to the parents and nurses
in the study, the need for respite evolves over time. Given this
evolution of need, a developmental map might prove beneficial
to parents as well as service providers. Further study on the
utility of the developmental trajectory is necessary. Such inquiry
could lead to the further recognition of the changing needs of
parents and provide a tool that will be useful in planning and
coordinating care.
Acknowledgement
We want to thank Dr Cheryl Gibson for reviewing the paper.
Key messages
• Current literature focuses on the day-to-day issues of
caring for children requiring complex care with little
attention to the long-term experience for the parents.
• The respite needs of parents of children requiring complex
care change over time.
• Changes in respite needs follow the trajectory of care for
such children and are plotted as a developmental map.
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