Child Care in Practice

ISSN: 1357-5279 (Print) 1476-489X (Online) Journal homepage: http://www.tandfonline.com/loi/cccp20

A Pilot Investigation of a Parenting

Intervention for Parents and Children with
Neurodevelopmental Disorders (NDD)

Madeleine Fitzpatrick, Eunan McCrudden & Karen Kirby

To cite this article: Madeleine Fitzpatrick, Eunan McCrudden & Karen Kirby (2018): A Pilot
Investigation of a Parenting Intervention for Parents and Children with Neurodevelopmental
Disorders (NDD), Child Care in Practice, DOI: 10.1080/13575279.2018.1446906

To link to this article: https://doi.org/10.1080/13575279.2018.1446906

Published online: 23 Apr 2018.

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CHILD CARE IN PRACTICE, 2018
https://doi.org/10.1080/13575279.2018.1446906

A Pilot Investigation of a Parenting Intervention for Parents

and Children with Neurodevelopmental Disorders (NDD)
Madeleine Fitzpatricka, Eunan McCruddenb and Karen Kirbyc
a
School of Psychology, Trainee Clinical Psychologist, Queen’s University Belfast, Belfast, UK; bHighly Specialist
Clinical Psychologist, Royal Belfast Hospital for Sick Children, Belfast UK; cSchool of Psychology & Psychology
Research Institute, Ulster University, Magee Campus, Londonderry, UK

ABSTRACT KEYWORDS
Purpose: Research is only beginning to address the extent to Neurodevelopmental
which evidence-based parenting programmes have utility and disability; acquired brain
merit within populations of children and families with injury; parenting
intervention; self-efficacy
neurodevelopmental disorders (NDD). The purpose of this paper
is to evaluate a parent-focused intervention for families who
have a child with a NDD and investigate whether this type of
intervention could improve parental self-efficacy; child behaviour,
and child quality of life (QoL).
Design/methodology/approach: In total five families caring for a
child with a NDD participated in an evidenced-based parenting
programme. A repeated measures design was employed to
measure parental self-efficacy levels, child behaviour and child
QoL. Glass’s delta was used to measure effect sizes.
Findings: Clinically significant improvements from pre to post-
intervention were noted in seven of the eight parenting
domains and seven of the ten child behaviour domains
assessed, with medium to large effect sizes reported.
Research limitations/implications: It was anticipated that
children would benefit indirectly through the intervention,
however this was not supported.
Practical implications: This research adds to the evidence base
on the potential for parent-focused interventions within NDD.
Originality/value: These findings support the potential effectiveness
of parenting programmes in NDD populations.

Introduction
Neurodevelopmental disorders (NDD)
Neurodevelopmental disorders represent heterogeneous presentations wherein impair-
ments in cognition, communication, behavior, and motor function are the result of atypi-
cal brain development. Moreno-De-Luca et al. (2013) proposed this framework which
encompassed less (e.g. disorders of learning, language, and developmental co-ordination)
and more severe neurodevelopmental disabilities (e.g. intellectual disability, cerebral palsy,
and autistic spectrum disorders).

CONTACT Madeleine Fitzpatrick mfitzpatrick16@qub.ac.uk School of Psychology, Trainee Clinical Psychologist,

Queen’s University Belfast, David Keir building, 18-30 Malone Rd, Belfast BT9 5BN, UK
© 2018 The Child Care in Practice Group
2 M. FITZPATRICK ET AL.

Within this framework, dysfunction, whether caused by genetics or due to an insult

to the developing central nervous system (e.g. through exposure to a teratogen,
medical treatment, physical trauma, or hypoxia-ischaemia), usually presents with cog-
nitive, motor, or behavioural impairments. While a helpful starting point, such con-
ceptual frameworks must take into consideration the wider developmental contexts in
which children grow, develop, and learn. Studies have demonstrated that environ-
mental and personal factors are also important predictors of activity and partici-
pation. However, some studies (e.g. Woods, Catroppa, Godfrey, Giallo, et al., 2014)
have noted that parents and families are often characterised as being passive in the
rehabilitation context and process. This contrasts with the emerging recognition
that intervention strategies should begin with the family and recognise the central
and pivotal role that parents and families play in facilitating a child’s function
(Byard, 2015).

The challenges of parenting when a child has NDD

Increasingly, it is noted that parenting a child with an NDD can be particularly challenging
(Braiden, McDaniel, McCrudden, Janes, & Crozier, 2012; Parkes & McCusker, 2008). In
discussing the intricate relationship between children with NDD and their developmental
contexts (including families & various services) it is impossible to delineate the various bi-
directional, interactive, and additive forces and stressors at play. However, a significant
evidence base has highlighted the various outcomes for children with NDD, their
parents, siblings, and families.
In relation to children with NDD, difficulties associated with their condition can have
implications for the child’s functioning across interpersonal and intrapersonal domains.
These interpersonal and intrapersonal difficulties can have serious impacts on a child’s
quality of life (QoL). In the context of children with acquired brain injury (ABI) Limond,
Dorris, and McMillan (2009) reported a deterioration in the child’s QoL following the
ABI. These difficulties can also result in poorer academic attainment, a greater risk of
mental health problems, higher levels of mental health service use, poorer employment
opportunities, increased encounters with law enforcement agencies, and a higher rep-
resentation in the criminal justice system (Dasarathi, Grace, Kelly, & Forsyth, 2011).
As noted, the impact of condition-related difficulties is not linear, but interactive and
cumulative. For example, elevated rates of long-term behavioural problems in children
who have an ABI can impact on other areas of the child’s life including school and
social-play.
The impact and implications of NDD are often felt beyond the child, with the out-
comes for both parents and siblings implicated (Battista, Soo, Catroppa, & Anderson,
2012). Lower QoL has been reported in the siblings of children with NDD, when
compared with age-based norms (Brookes, Lah, & Sambuco, 2008; Demellweek &
Appleton, 2006). In addition, feelings of anger, loneliness and sadness have been
noted in siblings of NDD (Demellweek & Appleton, 2006) with these emotional
responses thought to impact on sibling’s schoolwork and friendships (Brookes
et al., 2008).
The experiences of parents of children with NDD vary hugely, with a variety almost as
wide as the spectrum of difficulties subsumed under the NDD umbrella. Parental
 CHILD CARE IN PRACTICE 3

involvement in their child’s life following an NDD can be impacted by the parents’ adjust-
ment, their mental health, their belief in their own abilities to parent, their own reaction to
the identification of an NDD, and the repertoire of parenting skills on which they can draw
upon (Woods, Catroppa, Godfrey, & Anderson, 2014).
It is not surprising to find that parents of children with NDD can experience
depression, guilt, and anxiety (Furlong, Sellars, Doyle, & Appleton, 2006; Savage, Depom-
pei, Tyler, & Lash, 2005). Jordan and Linden (2013) conducted a qualitative study on
mothers’ experiences following their child sustaining a brain injury. They report that
the parental burden associated with TBI arises from a number of processes. These
included: having to watch their child dealing with daily challenges; dealing with their
child’s behaviours; grieving for their child’s (and their own) lost life potential, and
dealing with contradictory emotions (e.g. love, frustration, resentment, guilt). Similarly,
Magee and McCrudden (2012) reported that parents of a child with a brain injury reported
substantially lower scores than population norms in terms of: their empathy with their
child; their understanding of, and ability to control, their child’s behaviour; the pressure
they felt in meeting their child’s needs; and the enjoyment they got from interactions
with their child.
These feelings and reactions in turn, can have implications for the quality and quantity
of parenting availability (Reupert & Mayberry, 2007). As such, it is unsurprising that, in
the context of ABI Chevignard, Toure, Brugel, Poirier, and Vannier (2010) reported
there is a significant need to provide early post-injury interventions not only for the
child, but also the parents and siblings; with similar calls being made in the context of
other NDD populations (e.g. autistic spectrum disorders (ASD), Braiden et al., 2012; cer-
ebral palsy, Whittingham, Wee, & Boyd, 2011). In non-NDD parenting populations
Sanders and Woolley (2005) found that interventions that act to increase feelings of
self-efficacy in parents should have positive effects on fathers’, mothers’, and children’s
mental health outcomes. In line with this, Riley’s (2007) research into the parental
beliefs about difficult behaviours associated with childhood TBI highlighted that
parents’ beliefs regarding their own ability to control their child’s behaviour could
reduce parental stress and result in less behavioural difficulties for their child.
Viner et al. (2012) implied that some of the behavioural difficulties noted in children
with NDD might actually be indirect manifestations of the impact of hospitalisation on
parental assumption and attribution. They observed that some of the difficulties noted
post-NDD might, in fact, relate more to the hospitalisation experience, rather than under-
lying neurological pathology. The same issue is also alluded to by Braga, Da Paz Junior,
and Ylvisaker (2005), who noted that in the aftermath of a TBI, dynamics within families
can be profoundly altered.
With reference to parenting skills and practices, within specific NDD populations (e.g.
TBI, Woods et al., 2014) it has been reported that parents can use pro-active and positive
parenting strategies (e.g. positive reinforcement, rationalisation, logic). Conversely, more
negative parenting behaviours (e.g. punishment, force & acquiescing to children’s
demands) are also frequently endorsed. In the context of challenging behaviour associated
with NDD, parents reported that they were less likely to employ positive parenting prac-
tices to manage the challenging behaviour. As such, Woods et al. (2014) observed that dys-
functional parenting practices potentially exacerbate challenging behaviour associated
with NDD and therefore, should be a target for post-NDD intervention.
4 M. FITZPATRICK ET AL.

Parenting intervention in NDD

Parenting programmes aim to enhance the parent-child dyad as there is a substantial
evidence base to suggest that this dyad has a direct relationship with child behav-
ioural, social, emotional, psychological, and physical health outcomes (O’Connor &
Scott, 2007).
Parenting programmes can be deployed in community samples, as well as being tai-
lored to address the needs of at-risk populations (NCB NI, 2013). Within this context
families where there is a NDD are an at-risk population, given: higher levels of behavioural
problems (Taylor et al., 2002), reduced QoL levels (Limond et al., 2009), higher levels of
parental stress (Hawley, Ward, Magnay, & Long, 2003), and lower levels of parental self-
efficacy (Magee & McCrudden, 2012).
The professional and research consensus suggests that parenting programmes should
be structured, have a curriculum, include relationship-enhancing strategies, offer a suf-
ficient number of sessions to maximise the possible benefits for participants; enable
parents to identify their own parenting objectives, incorporate role-play during sessions,
and complete homework between sessions. Such programmes should be delivered by
facilitators who are supervised and who are able to engage in a productive therapeutic
alliance with the parents (NICE, 2006). Sessions should also centre on child-parent
interactions, with specific information regarding children’s specific needs (NCB NI,
2013). Effective parent targeted interventions focus on enhancing the capacity of
parents to act as co-therapists and educators for the various professionals whom their
child comes into contact with. In effect, parents are educated to act as advocates for
their child as parent-professional collaboration is seen as essential to treatment
outcome and generalisation (Braiden et al., 2012). It is anticipated that these interven-
tions should produce improvements in three areas, namely: child-focused outcomes
(encompassing emotional & behavioural development), parent-focused outcomes
(including parenting skills, attitudes & feelings, knowledge & understanding of child
development, emotional health & social networks) and child-parent outcomes (attach-
ment relationships, NCB NI, 2013).
An emerging evidence base is documenting the potential implications of parent-
focused intervention in NDD populations. Singer et al. (1994) created psychosocial
interventions, a psycho-educational stress management programme, and an informa-
tional support group, in an attempt to reduce these stress levels experienced by
parents of children with NDD. These interventions were delivered in a support group
format with one group of parents participating in the psycho-educational and stress
management programme and the other participating in the informational support
group. They found that psycho-educational and stress management interventions
were more successful in reducing parental stress, anxiety, and depression rather than
informational support.
Similarly Wade, Wolfe, Brown, and Pestian (2005) developed a web-based family
intervention for children with a TBI. They found that online family interventions
provide a viable means for improving child and family outcomes. They utilised a pre-
post design framework, with the intervention contributing to a reduction in parental
burden and child behavioural problems. Wade, Michaud, & Brown (2006) reinforced
this idea further when they conducted a family problem-solving and skill-building
 CHILD CARE IN PRACTICE 5

intervention programme with families affected by childhood TBI. Sixteen families

received the intervention while the control group (16 families) received no intervention.
Their findings concluded that parents who received the intervention reported signifi-
cantly greater improvements in their child’s behaviour than those who did not
receive the intervention.
Brown, Whittingham, Boyd, and Sofronoff’s (2013) systematic review of parenting
interventions for TBI reported similar findings. These findings were drawn from meth-
odologically robust studies but needed generalisation. Six of the studies reviewed
reported significant improvement in child behaviour/emotion after intervention. Three
studies also reported improvements in parental coping, and user satisfaction was uni-
formly high. Studies reviewed also explored the internet as a vehicle for the delivery
of interventions. This was seen to make the interventions accessible beyond traditional
venues (e.g. clinics).
Subsequent to the Brown et al. (2013) review, Woods, Catroppa, Godfrey, and Ander-
son (2014; Woods, Catroppa, Godfrey, Giallo et al., 2014) published two studies of the
Signposts intervention. This intervention was originally developed to provide support to
families caring for children with intellectual disabilities and challenging behaviour and
was modified to the needs of parents who had a child with a NDD. This was delivered
in one of three formats (i.e. parent self-directed via a manual; via group-based supports
or telephone based support). The content of the intervention included modules on: the
impact of a brain injury on the family; measuring child behaviour; behaviour modification;
developing skills and dealing with family stress. Evaluations showed significant improve-
ments in parental stress and child behaviour, along with positive consumer satisfaction
ratings. Evaluations of other parenting interventions in other paediatric populations
(e.g. congenital heart disease) have found, similar to Wade et al. (2005), Brown et al.
(2013), Woods, Catroppa, Godfrey, and Anderson (2014); and Woods, Catroppa,
Godfrey, Giallo et al. 2014), that positive outcomes can be achieved when interventions
focus on enhancing resilience, adjustment, and stress reduction, employing problem-
solving and family therapies (McCusker et al., 2012).

The current study

This study aimed to investigate whether a parent-focused intervention could improve
parental self-efficacy, child behavior, and child quality of life (QoL) in a group of
families where children had a NDD. The programme was developed following on
from the observations of parents involved in a prior study (Magee & McCrudden,
2012) in which parents reported that they were feeling unskilled in dealing with
some of their children’s behaviours, their child’s condition, and the factors influencing
their behaviour.
As such, in the current study we sought to respond to parents’ expressed need for
assistance in relation to parenting their children with a NDD. With concomitant impli-
cations for not only the child with the condition, but also for their parent and siblings,
this parenting programme was designed and delivered following a partnership
approach, involving a voluntary sector group and a healthcare provider. The pro-
gramme’s curriculum was designed in light of the findings of a number of studies
and reviews.
6 M. FITZPATRICK ET AL.

Method
Study design and procedure
This service evaluation was reviewed and approved by the Ulster University Research
Ethics Committee. It used a repeated measures pre-post design to determine parental
self-efficacy levels, child behavior, and child QoL. Families were approached to take
part in the evaluation when attending the parent-focused intervention. Whilst in attend-
ance the facilitators of the intervention informed the families about the evaluation and, if
interested in taking part, their contact details were given to the evaluator who scheduled a
time to assess them.
In line with ethical guidelines, a detailed explanation of the research was given, with
written informed consent and assent forms obtained. Prior to the parenting programme
commencing, the evaluator met with the families separately and administered an evalu-
ation pack to the parents, children with a NDD, and their siblings. Parents provided
pre-intervention ratings of parental self-efficacy and child behaviour whilst the children
(children with NDD & siblings) provided pre-intervention ratings of child QoL. The
parents then partook in the parenting focused intervention (five sessions over 10
weeks). Data collection procedures were repeated post-intervention for parents, children
with NDD, and siblings to determine intervention effects on parent-reported self-efficacy,
child behaviour and child QoL.

Participants
Participants came from families known to the Northern Ireland Branch of the Child Brain
Injury Trust. Only the parents of children with NDD directly participated in the interven-
tion. However, data was collected from parents, children with NDD, and their siblings.
Inclusion in the study required that the parents had to have a child with a NDD. The
child with a NDD and their siblings needed to be between the ages of eight and 16 years of
age. Families were excluded if the children with a NDD and their siblings were below the
age of eight or over the age of 16 years. Any participant who withdrew consent and any
child or family who were also engaged in any other Health Trust based intervention pro-
gramme relating to NDD, were also excluded.
A total of five families (six parents, five children with an NDD and three siblings) were
recruited out of seven families approached. Demographic characteristics of the sample are
provided in Figure 1. Reasons for not participating in the research study included difficulty
obtaining child care (n = 1) and time constraints (n = 1). There was no difference between
participants and non-participants in terms of their child’s age or race.

Parent-focused intervention delivery

The Child Brain Injury Trust facilitated this programme in partnership with a highly
specialised clinical psychologist specialising in paediatric neuropsychology. The facilita-
tors delivering the programme were supervised and had access to on-going professional
development to ensure that a productive therapeutic alliance could be maintained.
The parenting programme had a structure and curriculum underpinned by psychologi-
cal theory (see Figure 2). It included relationship-enhancing strategies, communication
 CHILD CARE IN PRACTICE 7

Figure 1. Demographic information

improvement strategies between parents and children, psycho-educational techniques and

behavioural management interventions. The parents were provided with homework
(between sessions) in order to achieve a generalisation of newly rehearsed behaviours in
the home situation. In between sessions parents could contact the facilitators to discuss
general concerns if necessary.

Measures
Parental self efficacy
Parental self-efficacy was assessed with the Tool to Measure Parenting Self-efficacy—
(TOPSE; Kendall & Bloomfield, 2005). The TOPSE is a widely used tool in the UK in eval-
uating a range of parenting interventions and has been found to be both a valid and
reliable measurement (Kendall & Bloomfield, 2005). It consists of 48 self-efficacy state-
ments that address eight domains of parenting; emotion and affection, play and enjoy-
ment, empathy and understanding, control, discipline and boundary setting, pressures
of parenting, self-acceptance, and learning and knowledge. There are six statements for
each domain and parents indicate how much they agree with each statement by respond-
ing to a Likert scale from 0–10 where 0 equates to “completely disagree” and 10 equates to
“completely agree” (Kendall & Bloomfield, 2005). Of note, a higher score on this measure
is indicative of high levels of parental self-efficacy.

Child behaviour
The Strengths and Difficulties Questionnaire (SDQ; Goodman, 1999) was employed in
this study to measure parent-reported child behaviour pre-post intervention. The SDQ
is a standardised 25-item questionnaire suitable for children aged 4–16 years, divided
into five domains; emotional symptoms, conduct problems, hyperactivity/inattention,
8 M. FITZPATRICK ET AL.

Figure 2. Outline of session content for parenting intervention programme

peer relationship problems, and pro-social behavior, with responses given on a three-point
Likert scale. Of note, a lower score in the domains is indicative of an improvement with the
exception of the pro-social domain in which higher scores are indicative of an
improvement.

Child quality of life

The KIDSCREEN 27 (Ravens-Sieberer et al., 2007) was used to measure the QoL of a child
with a NDD and their siblings from pre-post intervention. The KIDSCREEN 27 is a brief
 CHILD CARE IN PRACTICE 9

and valid self-report measure of Health-Related QoL for children aged 8–18 years. It con-
tains 27 items across five domains; physical wellbeing, psychological wellbeing, autonomy
and parents, peer and social support, and school environment, with responses scored on a
five-point Likert scale from “not at all”, “slightly”, “moderate”, “very”, to “extremely”. Of
note, higher scores are indicative of higher levels of QoL.

Statistical analyses
Descriptive statistics (means and standard deviations) were employed to examine changes
from pre-post intervention. Given the small sample size and the fact that this intervention
was, in effect, an exploratory investigation of whether the intervention could bring about
change (Bowen et al., 2009) we opted to focus on effect size (rather than statistical signifi-
cance; Cohen, 1994). For analytic purposes Glass’s delta was used to measure effect sizes
within the parent-focused intervention, with 0.0–0.2 = small effect, 0.3–0.5 = medium
effect, 0.8+ = large effect. All data was entered, coded, and analysed using the Statistical
Package for the Social Sciences (SPSS) Version 20.0 (IBM Corporation, 2011).

Results
Participation
Five families participated in the study with a retention rate of 100 per cent from pre- to
post intervention.

Parental self efficacy

Ratings of parental self-efficacy were completed by six parents. Parental ratings of their
parental self-efficacy almost uniformly increased. Mean ratings of change were greatest
in relation to learning and knowledge (14.4), followed by self-acceptance (10.00), pressure
(8.45), play and enjoyment (5.29), control (4.42), empathy (3.58), emotion and affection
(2.57). Of these changes, all indicated medium to large effect sizes, with the greatest
effects noted in relation to learning and knowledge (1.12) and self-acceptance (0.91).
Mean discipline scores decreased over the course of the intervention (−9.57), with a
large effect size noted (1.93, see Figure 3).
Qualitative feedback from parents at the end of the programme indicated that the inter-
vention made them feel more confident in themselves as parents, better able to cope with
parenting their child with a NDD, and changed their outlook on their parenting. In
relation to discipline, parents noted that the intervention had provided them with alterna-
tive and additional means of managing their child’s behavior, with alternatives to disci-
pline discussed. This may well have contributed to the reduction in scores in relation to
the discipline domain.

Child behaviour
Five children with NDD were rated by parents in relation to their behaviour (as one parent
dyad had attended the intervention they provided a composite rating of their child and the
child’s sibling’s behaviour). In relation to parent-rating of child behaviour in those chil-
dren with NDD it was noted that scores improved in four of the five domains assessed.
10 M. FITZPATRICK ET AL.

Figure 3. Mean outcome score pre- and post-intervention and Glass’s delta

The magnitude of improvement varied between: pro-social (1.60), hyperactivity (−0.60),

conduct (−0.20), and peer (0.20) domains. There was no change in parent ratings of child
emotionality in those children with NDD across the intervention. Effect sizes were small
for four domains, with a medium effect size noted in relation to pro-social domain.
With regards to the siblings it was noted that significant improvement was evident in all
domains. Mean scores suggested an improvement in all areas following the intervention.
In order of magnitude, the largest effect was noted in relation to: hyperactivity (−2.66),
followed by emotional (−2.0), peer (−1.67), conduct (−0.2), and pro-social (0.67)
domains. Inspection of effect sizes indicated a large effect size for hyperactivity. Emotional
and peer domains showed a medium effect. Conduct and pro-social behaviour showed
small effect sizes (see Figure 3).
It may be possible that due to the information gained on the parenting programme
and the implementation of some of this knowledge from pre-post intervention that the
parents’ perception of their child’s behaviour had changed. Qualitative feedback from
parents at the end of the programme indicated that parents felt better able to cope
with their child’s behaviour and the management of this behaviour through the use
of effective strategies.

Quality of life
Four children with NDD provided self-report on their assessment of their quality of life.
Four domains suggested improvement following the intervention. Scores in one domain
decreased at post-intervention assessment. Increases of the greatest magnitude were
noted in relation to general mood (1.5). Family and free time showed the next largest
improvement (1.5). Mean school scores increased by 0.75, and physical activity increased
by 0.5. Assessment within the friend domain indicated a decrease (−0.5). All of these
changes demonstrated small effect sizes (see Figure 3).
 CHILD CARE IN PRACTICE 11

Assessments of sibling QoL was collected from three informants. Two domains
suggested improvement (physical activity, 1.0; general mood, 1.67). Two domains
suggested dis-improvement (friends, −2.0; family and free-time, −1.67). The school
domain remained unchanged over the course of the intervention. Physical activity
scores yielded a small effect size; general mood yielded a medium effect size.
Deteriorations were suggested in relation to family and free time (medium effect) and
friends (large effect size). See Figure 3 for these results.
The timing of post-intervention measures were taken during the summer months, this
may have been a factor in the suggested areas of deterioration (namely family / free time
and friends).

Discussion
Objective of the study
The main objective of this study was to investigate whether a parent-focused intervention
for families where a child had a NDD could improve parental self-efficacy. The rationale
for this focused on the recognition that parenting self-efficacy is a crucial component of a
parents’ ability to manage their child’s behaviour, with problematic behaviour being well-
noted in NDD populations, as well as dysfunctional parenting practices also being a factor
in long-term behavioural sequale in children (Loeber & Farrington, 2000). Other studies
(e.g. Wade, Carey, & Wolfe 2006; Woods et al., 2014) have demonstrated the utility of
parent-focused intervention in ameliorating child behaviour problems. In line with
these findings, we found that this parent-focused intervention did indeed bring about
improvements in most domains of parenting self-efficacy.
Additional objectives related to whether such a parent-focused intervention could also
improve child behaviour and QoL. It was assumed that by helping parents develop their
parenting skills (i.e. understanding their child’s condition, ability to implement behaviour
management) that additional improvements within the family system might be noted in
terms of children’s behaviour and QoL. Siblings of the child with NDD were also targeted
within this intervention as it was acknowledged that NDD does not impact on the child
with NDD alone, but instead impacts on the whole family unit (Brookes et al., 2008;
Demellweek & Appleton, 2006). Contrary to our expectations the benefits and improve-
ments noted by parents in their self-ratings of parental self-efficacy were not matched uni-
formly with parental rating of child behaviour and child ratings of QoL. Instead isolated
improvements were noted in terms of pro-social behaviour (in children with NDD) and
hyperactivity, emotional, and peer problems (in siblings).
Children with NDD and their siblings did not demonstrate a significant improvement
in self-rated QoL.

Contribution
The Brown et al. (2013) systematic review of parenting interventions following specific
NDD (i.e. TBI) highlighted that the improvements noted (in child behaviour/emotion fol-
lowing parent-focused intervention) were in need of generalisation. The current study
provides just such generalisation, with noted improvements in both child behaviour
12 M. FITZPATRICK ET AL.

and parental self-efficacy. Brown and colleagues also drew attention to the need to make
interventions accessible beyond traditional venues (e.g. clinics). By adopting a partnership
approach, involving parents/families, voluntary sector providers, and healthcare pro-
fessionals, this study sought to move interventions from clinical settings to a more acces-
sible community setting. Though not reported here, this partnership approach focused on
family need, acceptability, and access. These aspects of the intervention were greatly
valued by participants.
This current study also utilised siblings of children with a NDD as a comparison group
to those children with a NDD. This is of particular importance as Perlesz, Kinsella, and
Crowe (1999) noted in their research that siblings are often isolated from their brother
or sister with a NDD (e.g. TBI) during the hospitalisation stage. It is argued that exclusion
of these siblings in this way can lead to a limited understanding of the siblings’ response.
This current study contributes to the evidence based in focusing on both siblings and chil-
dren with NDD in relation to a parent focused intervention. Siblings of children with
NDD were included as a comparison group in order to monitor the differences
between child behaviour and QoL within these groups, pre-intervention and post-
intervention.
Furthermore, while siblings of children with NDD are noted to be an “at-risk” popu-
lation (Brookes et al., 2008), to the authors’ knowledge, no other studies have demon-
strated the potential improvement that can accrue for siblings of children with NDD
whose parents have attended a parent-focused intervention.

Limitations
Limitations in this study relate to sample size, heterogeneity of familial/parental experi-
ence, measurement issues, the time-scale of the project, and the potential to replicate
the intervention and arrive at the same findings. The sample for this study was small,
partly as this was a pilot study to investigate the feasibility of this approach. The
sample size is likely to cause bias that affects the validity of the findings; however, mean-
ingful information can still be interpreted.
In terms of parent/familial experiences, a variety of NDD subpopulations were rep-
resented (TBI, hypoxia, brain tumour) with varying age at onset (in utero to 12 years of
age) and functional implications (e.g. developmental delay, focal neuropsychological dys-
function—See Figure 1). In addition, a number of different family compositions were also
represented (e.g. single parent households, re-constituted families, and nuclear families).
This heterogeneity might well be considered a limitation. However, the demonstrated
improvements for parents in spite of this heterogeneity of experience perhaps evidences
the significant impact and implications a NDD has for families and associated parenting
practices and experiences. Furthermore, the demonstrated improvements (despite this
heterogeneity) do demonstrate the communality of parents’ experiences where a child
(and family) has a NDD.
In terms of measurement considerations, a number of issues limited the findings.
Firstly, with relation to the QoL measure as used with the children, a number of the
items and indexes seemed to suggest deterioration in the child’s QoL. However, closer
inspection of the scores indicated that this deterioration might well have been a timing
artefact. Data collection at follow-up occurred during school holidays. The items the
 CHILD CARE IN PRACTICE 13

QoL indicator focused on, time in school and/or with friends, owing to school holidays
both had decreased, but not deteriorated per se. In addition, while siblings were included
as a comparison group, it proved difficult (owing to the age-range of siblings) to have per-
fectly matched comparison data. For example, data from three siblings could not be col-
lected as their ages were outside of the range of the scale in question (one sibling too
young, two siblings too old).
Owing to time-limitations it was only possible to follow-up with families close to the
end of the programme. It remains to be reliably established the extent to which improve-
ments reported at the completion of the programme were sustained in the longer-term.
During the delivery of the programme there was an on-going dialogue between the
facilitators, wish to cover the component parts of the intervention (as outlined in
Figure 2) and the families, wish to have their experiences witnessed and validated
(Jordan & Linden, 2013). This is not an uncommon experience in the provision of
parent-focused intervention, but it does cause some difficulties. Within this type of inter-
vention delivery there is often a tension between facilitator (and evaluator) wishes to have
a manualised approach that is reliable and can be delivered with fidelity, and the familial/
parental wish for such programmes to be responsive to their own needs.

Future research
Based on the limitations discussed, further research may wish to consider the recruitment
of a larger sample size. As mentioned previously although the sample size of the current
study was small (which we recognise may impact on the validity), meaningful information
was still gathered. However, in order to expand the findings of this study a larger sample
size would increase the representativeness of the findings and increase the generalisability
of the findings to the NDD population.
A case series analysis may also be beneficial to consider, in order to overcome some of
the confounding variables present in the current study, namely the heterogeneity of the
NDD sample. It would be hoped that controlling for the confounding variables such as
NDD sub-populations would again increase the validity and reliability of the findings.
As the current study did not focus specifically on child-targeted interventions, future
research may wish to investigate this further, particularly in relation to the QoL outcomes
for the NDD children and their siblings. Further research may therefore wish to develop
an intervention that not only targets the children themselves but also the parents, in order
to delineate whether specific child-targeted and parent-targeted interventions for children
with a NDD and their siblings have a direct impact on child outcomes.
Throughout the current study accessibility to the evaluation measures was a learning
point, with some children being unable to access the measures due to intellectual ability
and reading age. Further research may therefore wish to consider this in replicating
these findings to ensure that all measures used are accessible to both children and
adults.
Furthermore, while an evidence base is developing for parent interventions being deliv-
ered in both group and virtual environments, it is possible that different modes of delivery
might meet different needs. While virtual packages might be indicated on accessibility and
cost grounds, these packages may not realise parents’ wishes for their experiences to be
heard and validated in a non-judgemental context (Jordan & Linden, 2013). Such needs
14 M. FITZPATRICK ET AL.

are more likely to be met in more traditional group-based interventions as is evident in this
study.
Therefore, although it would be too premature to unequivocally conclude that parent-
ing interventions within a NDD population will have a positive impact on both children
and parents equally, the results do lay the foundations for further research and do suggest
that an evaluation of this in a larger sample size, considering both child- and parent-tar-
geted interventions, is necessary in the future delivery and provision of high quality clini-
cal services.

Conclusion
This pilot investigation provides an evidence base to substantiate the value of parenting
interventions for children with a NDD. However, it remains to be established how such
an intervention can impact on parental self-efficacy, child behavior, and child QoL over
a longer time frame and if the improvements noted at the end of the intervention were
maintained on follow up. It is acknowledged that as this was a pilot investigation the
sample size was small and no control group was utilised. In order to expand and
improve the findings of this study, future research may wish to address such questions
and develop this further.

Acknowledgements
This research was completed within the Ulster University as part of an MSc in Applied Psychology
(Mental Health and Psychological Therapies). We would like to thank all of the families who par-
ticipated in this research and the Child Brain Injury Trust, without which this research would not
have been possible.

Disclosure statement
No potential conflict of interest was reported by the authors.

Funding
No external funding was provided to undertake this research. This research was completed within
the Ulster University as part of MSc studies in Applied Psychology.

Notes on contributors
Miss Madeleine Fitzpatrick is a Trainee Clinical Psychologist in her final year at Queen’s University
Belfast. Miss Fitzpatrick has a keen interest in parenting, systemic ways of working, child and
family, intellectual disabilities and service user involvement.
Dr Eunan McCrudden is a Highly Specialist Clinical Psychologist in paediatric neuropsychology.
He works within the regional paediatric neurosciences services based at the Royal Belfast Hospital
for Sick Children (RBHSC). He also leads the Children’s Acquired Brain Injury Consultation
Service (Children’s ABCS), a multi-disciplinary team who provide capacity building to services
managing and habilitating children following on from acquired brain injury (ABI).
Dr Karen Kirby is a Senior Lecturer within the School of Psychology, Ulster University, and has
been employed since 2004. Prior to this, she worked as a Counselling and Health Psychologist,
 CHILD CARE IN PRACTICE 15

and practised in the Child and Adolescent Mental Health Services (CAMHS) with some additional
consultancy work in Paediatric Psychology and Clinical Health Psychology departments within
the Western Trust. Karen’s current role as a Lecturer involves specialising and teaching ‘Child,
Adolescent & Family Mental Health’ and ‘Cognitive Behaviour Therapy’ at MSc level, and Coun-
selling Psychology (UG level). Karen is a full member of the Psychology Research Institute, and has
a number of ongoing projects and peer-review publications in the area of child and adolescent mental
health research and evaluating the effectiveness of Low Intensity CBT approaches. One of the largest
and ongoing studies has examined the local prevalence rates and predictors of common mental health
issues facing young people today, such as self-harm, anxiety, depression and cyberbullying. Karen also
engages in evaluating other preventative mental health approaches (coping, resilience and cyberbully-
ing) within the school curriculum, supporting the development of positive mental health and coping
skills in young people. In particular, Karen’s recent focus has been on growing the evidence base for
the ‘Hopeful Minds’ programme in Northern Ireland, Ireland and Malaysia (as part of Global chal-
lenge research priorities); and introducing Trauma Sensitive approaches across the community,
including schools. Dr Kirby remains registered with the Health and Care Professions Council and
is a Chartered Psychologist with the British Psychological Society.

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