The role of the MCH nurse working in partnership with the family to care

for a child with a diagnosed developmental delay

Introduction
Monitoring the growth and development of children at regular intervals
allows for the early detection of developmental delay. [ji1] One of the key aims
of Maternal and Child Health (MCH) nursing [ji2] practice is the early detection
and the referral of children with a developmental delay. In the transition from
suspicion and concerns about their childs development, to the confirmation of
the diagnosis of developmental delay, the lived experience for the family takes
on a whole new chapter. [ji3] This is unique to each family situation, although
there are common elements shared to varying degrees by families. Depending
on the degree of severity and permanence of the developmental
delay, [ji4] families may face a rollercoaster journey of therapies, testing and
appointments. Families may also face the loss of the sense of normality of
their child eventually growing into an independent adult, as well as mounting
financial burdens. In the context of the impact on the family, this essay
explores the question of what happens following a diagnosis of developmental
delay[ji5] . MCH nursing practice has a role to play in supporting families
beyond the diagnosis. [ji6]
Developmental delay is discussed generally rather than with reference
to a specific type of delay, and the role of the MCH nurse (MCHN) in the care
of the child is critically analysed along the spectrum of working in an expert
role to working in partnership with the family. While it is acknowledged that in
the broad range of developmental delay there are children with minor transient
delays that may only have minimal impact on families, analysis of the MCHN
role is in the context of more major persistent delay where there is significant
impact on the family.[ji7]
Developmental Delay
Developmental delay is established when an infant has not meet their
developmental milestones at the expected age (Mares, Newman, & Warren,
2005, p. 97). Developmental delays in infancy are the result of the complex
interactions of factors in the infant, carer and the broader social environment
(Mares et al., 2005, p. 20). Recent improvements in medical technologies
have led to a growing increase in the number of children with moderate to
severe developmental delays (Thurgate, 2005b, p.37). Delay can occur in the
four main areas of: motor both fine and gross; communication and language;

social and personal/adaptive; and cognitive (Mares et al, 2005, p. 97). Infants
born with specific syndromes and diagnosed conditions may have delays in
any or all of the areas of development, and the delays may vary in degree
(Mares et al., 2005, p. 97). Caring for a child with developmental delay at
home can place wide-ranging, unrelenting and sometimes overwhelming
stressors on families (Thurgate, 2005a, p.14). Developmental
delays [ji2] range in severity from minor and transient where a milestone is
reached soon after the expected age, to more major and persistent where the
milestone may not be reached for a long time if ever.
Role of the MCHN
The key roles of the MCHN are surveillance, early detection and referral
for developmental delay (DEECD, 2010b). For many families the MCHN is the
person who may have either detected the developmental delay through
physical and developmental assessments, or may have been the first person
to listen to the parents concerns about their child which may have been
highlighted through the Parents Evaluation of Developmental Status (PEDS)
and then Brigance screening. However the question of What happens
afterwards? for the family is asked. Is there even a place for the MCHN, and if
so, what is the role in the families care? Aspects of the raw lived experience
for these families, form the following six headings under which the MCHN role
is critically analysed.
1. Initial impact on the whole family
The diagnosis of developmental delay can result in a wide range of
reactions from family members. [ji1] Head and Abbeduto (2007, p. 293) note
that some families have high levels of stress with sustained impairment of
functioning, while some thrive on the challenges associated with the childs
developmental delay The impact of having a child with a developmental delay
on a family can never be underestimated, there are often very intense
emotions such as grief, anger, disbelief and isolation (DCDR, 2008, p.13). The
time of diagnosis can be a crisis where the parents expectations are turned
upside down (Sen & Yurtsever, 2006, p.239). The lived phenomenon of
developmental delay results in adjustments, alterations and accommodations
in almost every aspect of their lives (Bailey, 2007, p.291). Because the child is
most influenced by their family, it is very important to empower the family
(Blann, 2005, p. 265[ji2] ). The nature of the relationship between families and
health professionals is important, and how the family are treated at the time of

their childs initial diagnosis can have long term impacts (DEECD, 2010a,
p.27). Parents appreciate health professionals leaving room for hope, as this
leads to their healthy functioning within a framework of optimism (Kearney &
Griffin, 2001, p.589).
The context in which the diagnosis was made can impact on the role of
the MCHN and possible relationship with the family. From the time of
diagnosis, most families will have ongoing appointments with many
practitioners (Mares et al., 2005, p. 105). It is difficult for parents when
services are poorly co-ordinated, and contradictory advice can lead to feelings
of confusion and guilt (DEECD, 2010a, p.28). Health professionals need to be
sensitive to the realities of daily life for families, and not put on extra demands
of their time (DEECD, 2010a, p.28). These questions needs to be asked: Do
ongoing MCHN visits make extra demands on these families? Is the MCHN
adding to the families burden, and if so, is the family better off without the
MCHN service? There is no definitive answer to these questions as the
answer may be different for each family, depending on their circumstances
and the level of engagement they have with the MCHN. It is however still
important to ask these questions. The role of the MCHN may depend on when
the developmental delay was diagnosed, if diagnosis of the delay was before
contact with the MCHN then the MCHN may seem less relevant to the family,
and the family may even be unaware of the service the MCHN can provide. If
the MCHN already has a trusting relationship with the family then the MCHN
may play a key role.
2. Ongoing needs of the child
To some extent, children with developmental delay can be seen as
having the same basic needs as all children (DEECD, 2010a, p.20), but they
also have particular needs. Mares et al. (2005, p. 97-8) state that there is not
much evidence available on the effects of developmental delay in an infant on
the infants mental health. There is however clear evidence of a grief process
that parents do go through which may impact on the establishment of the
attachment relationship, this is particularly so if the infant is difficult to hold, or
does not respond with eye contact and smiles (Mares et al., 2005, pp 97-8).
Reichman, Corman & Noonan (2008, p. 680) state that often children with
developmental delay have complex educational and child care needs. They
need to hear language that they can understand, more time to learn and
practice new skills, simplified tasks, know their efforts are valued and have a
variety of ways to learn using all of the senses (DCDR, 2008, p.11). There can

also be more behavioural problems in children with developmental delay and

parents may need extra support in managing this (Baker, Blacher & Olsson,
2005, p.587).Children with severe delays may need ongoing assistance with
skills of daily living such as eating, dressing and talking which can place
enormous stress on the family (DCDR, 2008, p.13).
The MCHN will need to look beyond childrens basic needs. Of course,
the MCHN is well placed to continue assisting parents with their childs basic
needs of attachment, feeding, nutrition, introduction of solids, sleep and
settling and behaviour as part of their normal MCHN practice of anticipatory
guidance (DEECD, 2010b). The complexity of the needs of children with
severe developmental delay may bring into question the value of the MCHN
role for families, as the MCHN may not have the specific information the family
requires. The Key Ages and Stages (KAS) visits are designed around normal
development and the pamphlets and information provided in the packs are
designed around this (DEECD, 2010b). The appropriateness of this comes
into question when caring for a family where a child has significant
developmental delay. There is the option of additional visits and a more
flexible approach to the services provided at the discretion of the MCHN which
may more appropriately meet the childrens and the familys ongoing needs
(DEECD, 2010b, p. 9).
3. Ongoing needs of the family and the ripple effect on siblings and
extended family
The impact on the siblings of children with developmental delay should
not be overlooked. While such families can be seen as having the same core
needs as all families, inevitably having a child with developmental delay does
have a significant impact on the family (DEECD, 2010a, pp 20 - 3). Despite
there being surprisingly little known of the ripple effects on the family of child
developmental delay (Reichman et al., 2008, p. 680), developmental delay
can have a range of effects on families including stress, parenting
discrepancies, negative reactions from extended family, difficulty with school
interactions, and mixed responses from siblings (Dyson, 2010, p.43). This can
lead to social isolation as family and friends may not feel they have the skills to
care for the child (Thurgate, 2005b, p.40). Although the impact on siblings is
often overlooked in care of the family with a developmentally delayed child,
siblings often need additional support in the areas of: attention from family
members, encouragement to express how they feel, assistance to overcome
isolation from peers and adequate information about their siblings

developmental delay (McCullough & Simon, 2011, p.320-321). For some

siblings, care of the child may become lifelong and into adulthood often
beyond the death of their parents (Reichman et al., 2008, p. 680). Although
every family will have their own needs, most familys needs will include having
all of their questions answered, support in comprehending the nature of their
childs delay, information about services that are available and how to access
them, information and skills to best assist their child, and having some time off
(DCDR, 2008, p.13).
The MCHN can support family members to develop responsive and
positive relationships with their child with developmental delay from as early
age as possible. The MCHN is very well positioned to assist families as
building capacity by promoting resilience is a key principle the service is based
upon (DEECD, 2011). The MCHN can offer support giving parents and
siblings opportunities to share their feelings, fears and hopes for the child and
the family (DCDR, 2008, p.13). Families may have questions about younger
siblings such as: Will this child be affected too? MCHN may be well positioned
to reassure parents and provide support. The MCHN can encourage parents
to write down any questions they have so that they can be addressed either
with the MCHN of someone else (DCDR, 2008, p.13). In addition the MCHN
role includes referral to services that can support the family. The MCHN can
offer families contact information of support groups that may be able to assist
the family, for example the Association for Children with a Disability can offer
support as well as respite (DCDR, 2008, p.18).
4. Costs to the family
There can be a significant financial impact as often one parent may
have to give up work to care for the child. It is estimated that the cost can be
up to three times that of bringing up a child that doesnt have developmental
delay (Thurgate, 2005b, p.40). There are many hidden costs for families
including visits to doctors and other health professionals, special equipment
and possibly extra nappies long term (DCDR, 2008, p.13)
The MCHN may be able to assist families with accessing funds for
equipment, guiding them to CentreLink and referring to support agencies. As
the MCHN service is a free service, it may provide somewhere for families to
go for support and reassurance without added financial burden.
5. Working together - from expert to partnership model[ji3]

In order to foster collaboration with the family, the MCHN will discard
the mantle of the expert and be open to learning. It is critical to acknowledge
that the family are the experts regarding their childs daily needs (Tomaselloa,
Manninga & Dulmusa, 2010, p. 169; Warner, 2006a, p. 46). In a collaborative
model, health professionals take on the role of respectful learners, and
families are viewed as the experts on their own childs challenges (Fraenkel,
2006, p.237). Ordinary human decency and common sense are at the heart of
positive partnerships between professionals and families of children with
developmental delays (Blue-Banning, Summers, Frankland & Nelson, 2004,
p.181; Dunst, Trivette & Hamby, 2007, p.370). It is important that parents
and siblings wants and needs are respected in planning care for the child
(Egilson, 2011), and as children are unique and have diverse needs, holistic
care is required to meet the familys needs (Thurgate, 2006, p.42). Partnership
means working together as equals towards a common goal (Warner, 2006a, p.
45-53). Parents want to be truly collaborative with health professionals,
however the current reality for many families of family-centred care is more
that they are expected to take on more and more responsibility for their childs
care (MacKean, Thurston, & Scott, 2005, p.74).
Conclusion [ji4]
The role of the MCHN has been critically analysed in the context of the
question of What happens afterwards? for families once their child has a
diagnosed developmental delay. The appropriateness of MCHN involvement
has been questioned particularly from the view of not wanting to place a
greater burden on a family who may already have multiple practitioners
involved in their care, and a time consuming schedule of appointments. It is
acknowledged that in some circumstances particularly where there are
complex needs, it may be in the families best interests to not have MCHN
involvement. However, the MCHNs availability could be invaluable for families
who require support if issues arise.
It is recognised that the timing of diagnosis and whether the family
already have a trusting relationship with the MCHN may be a determinant of
MCHN involvement. The MCHN may have been the first person to either listen
to and act on the parents concerns about their child, or to detect the
developmental delay, and this may influence the depth of trust the family has
in the MCHN. A major focus of the MCHN role is assisting the family by
promoting resilience and offering support, transitioning from an expert model
into a partnership model of care.

For families who do have ongoing contact with the MCHN service, the role of
the MCHN may involve assisting parents with their childs basic needs of
attachment, feeding, sleep and behaviour, and normalising behaviour which is
not part of the delay. Although the current KAS visits are designed around
normal development, the flexible component of the service can be tailored to
meet the needs of a family having a child with developmental delay. As the
need arises, the MCHN can offer information and referral to support services,
and as a free service the MCHN does not add to the financial burden on the
family. When they need to share and be heard, the MCHN may be the only
person that mothers and families can go to, and as such, this is a vital role in
the health and wellbeing of the family

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