Dysphagia (2009) 24:322-332

DOI 100.1007/s00455-009-9210-7

ORIGINAL ARTICLE

The Lived Experience of Mothers of Children with Chronic Feeding and/or

Swallowing Difficulties
Ronelle Hewetson - Shajila Singh

Published online: 4 March 2009

Springer Science+Business Media, LLC 2009

Abstract
The purpose of this phenomenologic
study was to describe the lived experiences of seven
mothers who were providing home-based care for their
children with feeding and/or swallowing difficulties. Data
were collected using semistructured interviews and were
analyzed as per Colaizzis method of inductive reduction.
Results suggest that the mothers experiences can be
understood as two continuing journeys that were not
mutually exclusive. The first, Deconstruction: A journey of
loss and disempowerment, comprised three essences: (1)
losing the mother dream, (2) everything changes: living life
on the margins, and (3) disempowered: from mother to
onlooker. The second journey was Reconstruction: Getting
through the brokenness with the essences of (4) letting go
of the dream and valuing the real, (5) self-empowered:
becoming the enabler, (6) facilitating the journey, and (7)
the continuing journey: negotiating balance.
Keywords Caregiver experiences Feeding and/or
swallowing difficulties Post-traumatic growth
Deglutition disorders

R. Hewetson - S. Singh
Division of Communication Sciences. University of Cape Town,
Observatory, Cape Town 7925, South Africa
Email: ronelle.hewetson@uct.ac.za; rhewetson@gmail.com

A pediatric feeding and/or swallowing difficulty is serious

and potentially fatal as it can lead to the development of
complications such as growth failure and chronic lung
disease [1]. Many of these difficulties may be resolved with
medical treatment, except in about 3% of cases which will
be chronic in nature and require intensive intervention and
hospitalization [2]. Chronic feeding and/or swallowing
difficulties make it a challenge or impossible for children to
obtain adequate nutrition through oral intake alone
necessitating enteral feeding [3]. The use of enteral feeding
to manage short-term and chronic feeding difficulties is
increasingly recommended, which means that more mothers
are expected to manage this technology at home [3].
Most of the available literature on chronic feeding
and/or swallowing difficulties, according to Craig et al. [4],
adopts a biomedical emphasis on factors such as weight
gain and reduction in the incidence of feeding-related
medical complications. Relatively few international studies
[4-7] and one in South Africa [8] have examined the
everyday experiences of caring for a child with chronic
feeding difficulties, and little information is available on
factors that enable or hinder a mothers capacity to provide
such care. Mothers and other caregivers may feel
unprepared for the demands of caring for a child who
requires adapted feeding strategies [5, 9, 10]. Mealtimes are
described as difficult. Parents describe ambivalent feelings
about oral as opposed to enteral feeding [9]. Inconsistent
advice and techniques taught by professionals, together
with the manner in which information is provided, were
identified as sources of stress [7, 11]. Women often frame
their difficulty in performing feeding tasks as personal
inadequacies based on cultural and moral constructs about
motherhood, which is closely linked to the concept of the
ideal or good mother, defined by Woodward [12], as
the supposed transformation of women into the ideal
mother as a natural consequence of pregnancy. When the
ideal of meeting a childs feeding needs with ease is
unattainable, a perception of inadequacy may arise [13].

R. Hewetson, S. Singh: Mothers of Children with Feeding/Swallowing Difficulties

Though only a small number of studies have evaluated

parental experiences of managing enteral feeding at home,
what emerged was that it was often associated with
caregiver burden, perceptions of loss, and a greater degree
of stress was experienced relative to that of mothers with
children who had disabilities but who could still be fed
orally [3, 5, 14]. The initial decision to have a gastrostomy
tube inserted was found to be difficult for mothers to make,
which was not necessarily made easier where oral feeding
was challenging [4]. A link between a mothers perception
that she failed in her ability to feed her child orally and the
struggle to agree to have a gastrostomy tube insertion has
been identified [14]. The extent to which a chronic feeding
difficulty can impact on the primary feeders life was
explored by Franklin and Rodger [6] who reported that the
resultant changes to daily routines presented potential
physical and emotional consequences for the whole family
[6]. However, the benefits of providing home-based care
[15-17] to a family member who requires assistance with
daily needs has also been found to have the potential to
enrich and enhance the quality of life of those who provide
such care.
Research on experience of feeding has been
conducted primarily in Australia , North America, and
United Kingdom [4-7,9].South Africa potentially provides
a very different developing nation context in which
mothers are accessing healthcare services and providing
home-based care for children with chronic feeding
difficulties, thus highlighting the need for a study to be
conducted in Cape Town. The findings will have
implications for speech language pathologist, who are
uniquely concerned whit the management of feeding
disorders [18] . The aim of this study was therefore to add
to the understanding of the factors that enhance or hinder a
mothers ability to provide home-based care for her child
with chronic feeding difficulties, thus guiding healthcare
professionals in supporting families and promoting optimal
child outcomes.
Research Design and Method
The study aimed to broaden understanding of a group of
mothers experiences in the context of caring for a child
with chronic feeding and/or swallowing difficulties at
home and in accessing public healthcare services for what
child in Cape Town, South Africa. In order to describe the
essence of being such a mother, a phenomenologic
approach was chosen as the most appropriate design.
Phenomenology is a qualitative research that provides an
in-depth description of how people experience a give

phenomenon and ascribe meaning to their experiences

[19]. The field of speech-language pathology is guided by
evidence-based practice to demonstrate efficacy of
management. The importance of contextual considerations
cannot be ignored. Evidence is incomplete unless
information about complex phenomena such as human
behavior is reported. Evidence can be gained by
considering the lived experiences of participants [20]. As
such, a qualitative study has the potential to make
contributions to evidence-based practice [21].
Aims
The aims of this study were to describe a group of mothers
experiences in addressing the feeding needs of their
children; explore how these feeding mothers defined their
role and identity as a mother; and report barriers to and
enablers of capacity to provide home-based care and to
access health care services.
Participants
Ethics approval was obtained from the University of Cape
Towns faculty of Health Science Research Ethics
Committee. Purposeful sampling was used to select seven
women considered to be information-rich or who met the
inclusion criteria of providing home-based care for their
children with chronic feeding and/or swallowing
difficulties. The sample size in this study was based on the
minimum sampling strategy recommended by Patton [22]
in which the sample size is typically small as the aim is to
obtain richness and depth of information.
The participants all resided in and accessed public
healthcare services in Cape Town, South Africa. They were
diverse in their ages (between 22 and 45 years of age),
employment status, and marital status. At the time of the
study one mother had recently returned to full-time
employment, three were in part-time positions, and three
were unemployed. Five of the mothers were married (four
lived with their spouse) and were single. Their children
ranged in age from 3 to 13 years, with a mean age of 6
years 8 months. There was also variability with regard to
the onset (birth, infancy, and late childhood) and the nature
of the childrens feeding difficulties, as well as the type of
adapted feeding strategies used (children received
exclusive oral feeding, four exclusive enteral feeding).
Though the participants were not homogeneous, they were
all mothers who provided home-based care for their
children with chronic feeding difficulties.

R. Hewetson, S. Singh: Mothers of Children with Feeding/Swallowing Difficulties

Data Collection Procedures

Each of the mothers in this study participated in an indepth semistructured
interview [23].the general
interview guide approach [22] was used, which allowed
flexible exploration of issues raised by the mothers during
the interviews. This approach provided them with the
space to tell their stories without the influence of the
researchers personal assumptions. Suspension or
bracketing of the researchers assumptions, as required in
phenomenologic research, was implemented to reduce
interviewer bias and to enable a fuller understating of the
participants subjective experiences of the phenomenon
[24]. In an attempt to generate thick descriptions of the
phenomenon, detail and depth were gained through the
use of a main question and probe or follow-up questions
[23]. Each interview was initiated by asking the main
question: Please tell me as fully as you can about your
experiences of being the mother of a child with chronic
feeding difficulties. In answering this question think
about the things that have played a part in how you
experience your role as the mother. A preliminary
analysis of each interview enabled the researchers to
identify themes that in turn influenced questioning in
subsequent interviews. This flexibility reflected an
iterative process in line with the emergent design adopted
by this study. The audio-recorded interviews were
transcribed and a summary of emerging themes was then
returned to the participants to allow them to verify and
expand on their stories.
Data Analysis Procedures
The data analysis process was an adaptation of Colaizzis
[25] seven steps to analyzing data influenced by Giorgi
[26}, who emphasizes reduction of data in order to search
for essences common to all participants experiences. The
data analysis was inductive [27] as it occurred
concurrently with data collection and involved multiple
readings themselves in the data to facilitate intimate
familiarity with the content of each interview [28}.
Significant statements or units of information that were
directly related to the research question were selected and
arranged into themes. Clusters of themes emerged and
were directly and were grouped in seven essences.
Trustworthiness was addressed by describing the
phenomenon in a manner that captured the essence [26].
This study was designed and conducted to allow for an
audit trail [28] through which the dependability of the

findings could be evaluated. Credibility was enhanced

through the use of triangulation, member checking, and a
multiple-coding analysis strategy in which ten
independent coders interpreted segments of data.
Result
In describing the experiences of being the mother of a
child with chronic feeding and/or swallowing difficulties,
there emerged a need to present the data in two separate
categories representing two separate journeys. The two
categories stand apart as there is not a linear relationship
in terms of moving away from the experiences outlined in
"Deconstruction: A journey of loss and disempowerment"
toward those discussed in "Reconstruction: Getting
through the brokenness." Seven essences central to the
mothers experience emerged. A summary of the essences
within the two categories, together with the subthemes
that make up each essence, is provided in Tables 1 and 2.
Discussion
Verbatim quotes are used to delineate the mothers
experiences from the researchers discussion and the
academic literature. In order to preserve the essence of
their experiences, the discussion. By reviewing the
mothers words together with the associated meanings,
the reader is able to evaluate the trustworthiness of the
study.
Deconstruction: A Journey of Loss and Disempowerment
For the women who participated in this study, being the
mother of a child with chronic feeding and/or swallowing
difficulties meant starting a journey filled with emotional
and practical challenges. The term "deconstruction" was
chosen as a loss of role clarity, perceptions of competence
as mothers and social participation emerged.
Deconstruction was a universal process, characteristic of
the phenomenon that brought together experiences of loss
and disempowerment.
Losing the Mother Dream
One part of being the mother of a child with chronic
feeding difficulties meant that the mothers had to make
sense of societal, professional, and personally held
perceptions and beliefs about the link between the
mothering role and the ability to feed a child. The
incongruence between expectation and reality was most

R. Hewetson, S. Singh: Mothers of Children with Feeding/Swallowing Difficulties

strikingly experienced in the inability to feed but also in

having to perform uncomfortable or painful tasks on their
children, transforming their role from that of mother to
nurse. "... I can see that it is sore and uncomfortable for

him when I am doing it (reinserting the gastrostomy

tube), but I make myself hard because I know it has to be
done." The mothers' perception of their inability to

Table 1 Deconstruction: a journey of loss and disempowerment

Essence I
Losing the mother
dream

Essences 2
Everything
changes: living life
on the margins

Essence 3
Disempowered:
from mother to
onlooker

Subthemes

Significant statements (quotations from interviews)

Motherhood ideal and conflicting reality

A mother should naturally be able to feed her child, thats what mothers do

Bonding versus task

I tried to make the ask of putting milk through a tube as personal as what I
could, so I held him and talked to him

Questioning competence

For me the breastfeeding thing was I should at least be able to do it

Not letting go of the dream

Initially I was resistant to the idea [to enteral feeding] because it sort of felt like
that was the end you know

Changes to family interactions

I will sit on one side and feed her while the others are sitting eating somewhere
else having their Sunday lunch

Changes to lifestyle

If my husband says lets go to the beach I will say fine, but will go in my own
car so that I can come home to feed her

Changes in employment status and o

future plans

We havent been away since she was born. Our concern is for the future

Expected versus enable to cope

You are expected to do a lot things that I think most people would not be able to
cope with. Everybody expects that you must be able to do it because you are the
mother
I think the Physio sensed hope in me and thought: I'll sort out this hope. Every
day she would say: Do you realize how seriously disabled Rose (not actual
name) is? I'd get in the car and just cry
You just go for a check-up and that's it, you get no support from the hospital.
Your questions are never answered

Disempowering
interactions

professional

Disempowering public health system

Unanswered questions and unmet needs

identify with the construct of an ideal mother because a

good mother is a mother who is able tomake sure that
her children get enough food was closely related to a
theme of Maternal Failure identified by Thorne et al.
[3]. The participants in their study identified feeding as a
quintessential mothering act, symbolizing the loving role
associated with being a mother. In addition, a universal,
strong feeling of loss of their ideals of motherhood, which
extended further to the loss of the opportunity to bond with
their children, was present. For most of the mothers,
feeding became a tiring emotional capacity to accept the
loss of what they had expected to be bonding opportunity.
The loss of oral feeding and the need for adapted feeding
strategies resulted in them questioning their competence as
mothers. The experience of loss of an ideal about what
motherhood should be like was experienced by the mothers
in this study irrespective of the time of onset of feeding
difficulties.

The current study found a trend in an ongoing experience

of losing the mother dream, as the mothers recalled and
experience repeated and persistent grief and loss. A
persistent feeling of loss, described as chronic sorrow by
Olshansky [29], was not resolvable as the mothers in this
study could not let go of the dream and experienced
periodic resurgence of intense grief at times when they saw
other women performing mothering tasks relating feeding,
when their child was unable to participate in pleasurable
activities and social engagements involving eating (e.g.,
birthday parties, picnics, religious holidays), and when
expected developmental feeding milestones could not be
met: The presence of a persistent sorrow has also been
documented in parents of children with intellectual
impairment [30], Down syndrome [33], chronic mental

R. Hewetson, S. Singh: Mothers of Children with Feeding/Swallowing Difficulties

R. Hewetson, S. Singh: Mothers of Children with Feeding/Swallowing Difficulties

illness [34], and chronic medical conditions [35, 36] and

should be viewed as a natural rather than pathologic
reaction to ongoing experiences of loss in the presence of
chronic illness or disability [37]. Moreover, these parents
Essence 4
Letting go of the
dream
and
valuing the real

Essences 5
Self-empowered
becoming
the
enabler

Essence 6
Facilitating
journey

the

Subthemes

Significant statements

Redefining mother

You stop being a mother and you stop mothering in the traditional sense,
you become a caregiver

Celebrating the positives

When I say it so well done that she coughs so nicely, people look at me
and ask: She coughs well? But for me its such a big thing

Finding
support

information

Acquiring skills

The kind of information you need has to come from people, people who
have worked with these type of kid. You have to ask and people have to
tell you
I mean, there are a lot of things that I learnt. What nurses do, I can do

Empowering others

ft has also been wonderful to be able to give other mothers support

Challenging and advocating

I told the doctors if you tried something and it didnt help then Ill accept
it, but dont tell me before the time what you wont do. He is not walking
or talking so let him go. They mustnt have that attitude, they must fight
for him and whatever handicapped child till the end

Facilitating
caregiving

and

home-based

Facilitating ability to cope

within the public health care
sector
The importance of being heard
and offered hope
Essence 7
The continuing
journey:
negotiating
balance

A philosophical, emotional
and spiritual journey

If had been with her all day, in that sorrow, I dont think that I would have
been able toit has been easier for me to grow the hope because we are
walking this thing together, that is enormously comforting
I was very fortunate that my doctor spent a lot of time explaining things to
me
I go and talk to them, thats the way I feel better

Ive also got a challenge in outlook, at how I look where materialism

becomes so apparent

face an ambiguous (unclear and indefinite) loss as their

feelings of loss may not receive public recognition nor be
ritualized as would occur following the death of a child
[38]
Everything changes: Living Life on the Margins
Everything changes: living life on the margins captured
the essence of how the mothers experienced feelings of
isolation. Being the mother of a child with a chronic
feeding difficulty resulted in changes within a broad range
of contexts and had implications for social participation,
employment status, and future plans for these mothers.

Table 2 Reconstruction: getting through the brokenness

R. Hewetson, S. Singh: Mothers of Children with Feeding/Swallowing Difficulties

Activities engage in with ease prior to the diagnosis of a

chronic feeding difficulty became difficult due to the timeconsuming nature of caregiving tasks. The demands of
feeding-related tasks and the need to plan their lives
around mealtimes required the greatest change to the
mothers lives, more so than addressing the physical
difficulties with which their children presented.
The stories show a loss of ability to participate in family
gatherings, social interactions, and full-time employment:
I am just at home, I cant go anywhere, there is nobody
who can give his feeding, it is the feeding that keeps you
away from many things. Relationships with spouses,
extended family members, and friends were altered and
took on new meanings. Marital relationship were either
strengthened or negatively impacted, which appeared to be
related to the degree of paternal participation in caregiving
task as well as the extent to which the mothers
responsibilities as caregiver were acknowledged and
appreciated by the spouse. Restrictions in participation
occurred because of the demanding nature of the childs
caregiving needs; a lack of support in providing the care:
for two years it was just me doing everything his
father cant watch when the PEG has to come out; and a
lack of understanding on the part of friends and family
about the implications of integrating the roles of mother
with caregiver. The experience of loss that was so strongly
felt in relation to their ideals of motherhood extended
further to a loss of social participation and to employment
options.
Disempowered: From Mother to Onlooker
Two broad contexts emerged within which the mothers felt
disempowered, namely, in skill acquisition for adapted
feeding strategies and in emotional capacity to meet the
demands of providing home-based care. The mothers faced
the reality of being expected to cope versus being enabled
to do so. They experienced pressure from family members
and healthcare professionals to cope with the practical and
emotional implications of a chronic feeding difficulty.
When children failed to thrive, regardless of the mode of
nutrition, the mothers reported feeling distressed as they
perceived family members and healthcare professionals to
be judging their feeding practices: when Kevin (not
actual name) was losing so much weight, people will look
at me, or family will look at me and say what is going on,
are you wanting your child to die Maternal feelings of
feeding skills being judged by others was also reported by
Spalding and McKeever [14] and by Thorne et al. [3].

Capacity to cope and role confidence were further

deconstructed when accessing public healthcare services.
The mother experiences a sense of disempowerment in the
healthcare system in which they became passive observers
in the care of their respective children. Their initial
struggle to develop confidence in performing feedingrelated tasks was attributed to the limited time afforded to
them by healthcare professionals during demonstration of
these skills: They expect us to do things for which we are
not trained We have to learn how to do it in a split
second and try to remember it. The manner in which such
skills were demonstrated was characterized as brusque and
rushed thereby discouraging the mothers from raising
questions or discussing their emotional reactions to the
new skills to be performed. Other aspects of professional
interactions that reduced the mothers capacity to cope
included professionals insensitivity to the manner and
place in which information was shared (The doctor told
me to let nature take its course in the ward, in front of
everybody [translated from Afrikaans]); when no hope of
improvement was provided (So while you are sitting there
and hoping for a recovery for your child, they tell you
something and they want you just to give up); when
inaccurate assumptions about the mothers needs were
made (She [the doctor] told me why dont you put him
in a home She said it will be better for me so I said
why must I do it, I can look after him); when they failed
to demonstrate a true interest in the child or the mother;
and excluded mothers from discussion, decision making
and discharge planning ( and they [doctors] dont make
mothers part of discussions, they just say because they are
the doctors).
Mothers in the current study reported that their
information needs were often not met by healthcare
professionals: What would they have told me had I not
asked, and why must I ask, you are the doctor, you are the
therapist. It was difficult for them to make sense of the
diagnosis of dysphagia because they reported a lack of
understanding of the swallowing mechanism, of their
childrens swallowing difficulty, of the measures used to
evaluate swallowing, and especially the rationale for
adapted feeding. Even when a gastrostomy tube was
placed, some mothers lacked the information to understand
the rationale for enteral feeding or the mechanics of
gastrostomy tubes: What is the reason for the PEG? They
have not explained it to me yet. They only told me that a
PEG was going to be inserted. The mothers also
acknowledged that by not making their needs known, by
presenting a faade of being in control both during a
childs hospitalization and in interactions with friends and

R. Hewetson, S. Singh: Mothers of Children with Feeding/Swallowing Difficulties

family members they played a part in limiting their access

to information and of obtaining support: We (mothers)
look happy at the hospital. You sit and smile the whole day

Reconstruction: Getting Through the Brokenness

During the data analysis it became apparent that there was
more to the experience of being the mother of a child with
a chronic feeding difficulty than the deconstructive
processes outlined above. The mothers also spoke of joys
and opportunities for growth that occurred in the presence
of a situation which they described as traumatic, harsh,
and overwhelmingly sad. Getting through the
brokenness was a term used by one mother to describe the
brokenness was a term used by one mother to describe the
process of redefining her life and identity, a process which
was ongoing. Reconstruction occurred as these mothers
made positive personal adaptations through a process of
redefining the mother identity, celebrating the
positives, becoming the enabler, and engaging in an
ongoing journey of philosophical, emotional and spiritual
change
Letting go of the Dream and Valuing the Real
A redefining of mother occurred as these mothers
integrated the roles associated with being a mother with the
specialized care needs that they associated with being a
caregiver or nurse. The initial role conflict between mother
and caregiver that emerged was similarly found in a study
by Judson [39]. She too found a conflict between
mothering versus nursing roles for mothers who were
providing home-based care. What emerged from the
current study was that the mothers appeared to progress to
a stage where the roles of nurturing mother and resolute
caregiver (associated with tasks during which they had to
harden themselves) became integrated, thereby enabling
them to perform the diverse roles just becomes part of the
whole. The ability to incorporate the caregiver identity
into their identity as mother illustrated one aspect of
positive personal growth.
A recurring theme in the literature on home-based
care provided to children with disabilities and chronic
medical needs is the presence of caregiver feelings of
being overburdened [40, 41]. However, the mothers in the

there at the hospital but when you go home you cry you
have to appear strong in front of them.

current study demonstrated an ability to recognize both

positive and negative outcomes. Blaska [17] also found
that the presence of grief does not necessarily prevent
parents from identifying positive consequences of having a
child with a disability. For the mothers in this study it
appeared that they were able to identify and celebrate
positive changes in they were able to identify and celebrate
positive changes in their children once they modified their
ideals of a child and expectation of childhood development
"I think there are more moments now for me that I see her
as the most incredible gift, and I think the important thing
is let the gift be who, what it is instead of what you want it
to be." The ability to redefine their beliefs about being a
mother and to celebrate positive changes, in the presence
of ongoing feeling of loss and sadness, was a universal
theme that emerged from all the interviews irrespective of
the length of time that the child had been living with the
length of time that the child had been living with the
feeding difficulty, which ranged from 6 months to
approximately 13 years. The mothers were all able to "get
through the brokenness" of their situation and find
encouragement in change and progress: "She is who she
is... there is nothing to be, nothing lost. Everything we get
every day is a gain, it is something extra. And she can
cough, and she can laugh and she can smile." Personal
growth in times of stress and trauma or "post-traumatic
growth" has been documented [42, 43] and reflect the
findings of the current study as the mothers demonstrated
growth arising out of a situation that they experience as
traumatic. Their ability to increase their competence and
capacity to cope may have been influenced by their ability
to redefine themselves as mothers as well as celebrating
their children's achievements that were not necessarily
aligned to the attainment of development milestones.
Self-Empowered: Becoming the Enabler
Baksi and Cradock [44] define empowerment as a process
whereby knowledge, skills, attitudes, and self-awareness
are gained. The term self-empowered was chosen to define
this essence because for the mothers, the enabler or the
agent that endowed them with power was themselves.
When recalling early disempowering interactions with

R. Hewetson, S. Singh: Mothers of Children with Feeding/Swallowing Difficulties

healthcare professionals it emerged that the mothers did

not feel that they could request assistance or confront
professionals: "I am alone with this doctor. Why don't I say
something! "In contrast to such feeling of powerlessness
was a change that occurred in the mothers toward
becoming empowered which was linked to gathering
information and acquiring skills.
It has been found that parents experience less stress
during a child's hospitalization when they gain control over
the situation through the gathering of information about
their child's medical difficulties and treatment options [2,
45]. These findings are relevant to the current study
because the mothers also demonstrated an increased
perception of control of their situation through gathering of
information. Information was sought from healthcare
professionals ("So tell me what I want to know"), but when
parents were not able to able to obtain the information they
needed from professional, they actively found alternative
sources of information such as other parents, support
groups, and the internet.
Personal growth occurred for the mothers in this study as
they spoke of an increased ability to challenge healthcare
professionals ("One needs to be able to say: No, I don't
agree with it") and as they began to question public
healthcare policies. The current study therefore supports
findings that mothers may initially adopt a passive role in
relation to the medical management of their respective
children but that this passivity is replaced by and assertive
attitude in which they demand to be acknowledged and for
medical management to be in line with their wishes
because of acquired information [46, 47].
The mothers spoke of growth that occurred over time
in terms of their ability to perform various care tasks
associated with adapted feeding strategies. One mother
was greatly assisted by a healthcare professional who took
the time to ensure that skills were mastered. However, the
reality for the other mother was that "...there was not
anybody specifically guiding you." Competence was
gained through their own trial-and-error attempts: "We
give him something (to eat), and then we see how it works"
(translated from Afrikaans). As was found in a study aimed
at examining the process of mothering a child who was
reliant on parenteral nutrition [39], the mother in this
study also experience a powerful need to find structure in
gaining some measure of control over the challenges of
caring for their children.
Positive personal growth was further evidenced in their
empowerment of family members and even strangers. The
mothers shared their acquired skills ("...I trained Betty [not
actual name] to finger feed") and knowledge with family

members ("I downloaded information from the internet.

We printed everybody a booklet about cerebral palsy,
feeding issues...") They furthermore expressed a wish to be
able to empower other mothers by providing information,
practical skill demonstration, and emotional support ("I
would love to be there in the doctor's rooms when an initial
diagnosis is made, to say to the mother that she is not
alone, and that there are other mothers that can walk the
road with her"), a wish that has not been previously
identified in other similar studies [5, 9, 10].
An additional role identity emerged in most of the
mother as they felt a need to advocate for the rights of
children with disabilities. The mothers in this study
identified the need to promote equal treatment options for
children with disabilities in the public healthcare system.
Advocating for the rights of children with special needs
and challenging healthcare services and policies were also
found in McKeever's study [47] as the mothers moved
from a compliant to an assertive role through knowledge
and skill acquisition. Similar to Douglas and Michael's
finding [48], some of the mothers in this study were also
very aware of the images portrayed in popular media of
motherhood and how they were not able to relate to such
images. They expressed a desire to advocate for increased
representation of children with feeding difficulties in
popular media: "There is a TV programme all about
feeding... but there is not a single thing about feeding a
especial needs child. I think that I should write to them..."
"Self-Empowered: Becoming the Enabler"
Illustrated positive personal growth that occurred in the
mothers in areas such as acquiring information, support,
skills, and confidence.
The mothers empowered
themselves out of necessity because they were required to
perform specialized care tasks as the primary
caregivers, often without support from others, through
trial-and-error attempts. This empowerment was achieved
by taking control of the situation demonstrated in the
establishment of daily schedules, by finding and/or
creating sources of support, and through a discovery of
their own inner reserves. Their stories illustrated growth
that occurred from initially being passive observers in their
children's care to becoming empowered women as they
took control of their lives. The growth that occurred did
not, however, replace feeling of loss. Even though the
mothers moved toward a position of strength over time,
they also recounted instances where they returned to
feeling of disempowerment and sorrow: "...often what one

R. Hewetson, S. Singh: Mothers of Children with Feeding/Swallowing Difficulties

loses is the magic in the harshness, and I think that is what

I am trying to see again... but I can still feel beaten down."
Facilitating the Journey.
The experiences of the mothers in this study, depicted as an
ongoing journey, must be understood within the contexts of
providing home-based care and accessing public healthcare
services. The mothers identified a number of factors that
enabled their capacity to cope or helped them through their
journey of providing care for their children. Sources of
support within the two contexts of home-based caregiving
and the public healthcare setting ranged from spouses,
extended family members, coworkers, support groups, and
healthcare professionals.
The mothers demonstrated interpersonal coping
behaviors
they
accepted
support
offered
by
spouses, extended family members, and coworkers: "...we
(she and her husband) take turns and help each other with
everything that needs to be done..." Where such support
was not present, one mother was proactive in creating a
support group that could meet her practical and emotional
needs: "The nice thing about my support group is that we
phone each other, ..., we give each other support." The
availability of respite care or the sharing of daily
caregiving tasks was highly valued by the mothers;
however, it often was not offered by either extended family
members or home-based care agencies: "I told her (homebased carer) that I would teach her how to do it (enteral
feeding). But then she never came black. She said that she
is sorry but she would not be able to do it, she can't work
on a child with a PEG" (translated from Afrikaans).
Emotional support was gained when the mothers felt that
family members and friends understood their child's
caregiving needs, the concerns they had for the child's
future, and the emotional impact of having to fulfill the
role of primary home-based caregivers.
Supportive professional interactions played a role in
facilitating the mothers ability to cope with the challenges
of a feeding difficulty as well as creating a positive
perception of the public healthcare setting. The mothers
valued interactions with professional where the latter
showed an interest in the child, acknowledged the
mother's effort, displayed kindness, developed a
relationship with the mother, imparted skills, provided
options, and allowed the mother to make decisions. The
key factor that emerged from the current study was that
professional interactions were valued when a partnership
rather than a paternalistic professional-patient relationship
was established: "...I am very fortunate with my

pediatrician. She recommended that we go onto PEG

feeding. Initially I was resistant to the idea but agreed to
nasogastric feeding ... we started off with NG feeding...
and then it became just too much... so I went back to my
doctor and at that stage she arranged that I could see a little
baby that had a PEG in place." These findings are in line
with research on parent-professional communication in
pediatric healthcare setting by Nobile and Drotar [49].
They too found that parental satisfaction with care was
most frequently associated with effective parentprofessional communication in which the professional
showed genuine interest in the family and affirmed the
parents' effort and active participation. Interacting with
other mothers in similar situations during a child's
hosptalisation also emerged as an enabling factor when
accessing public healthcare services: "She (another
mother) was like a social worker... we shared everything.
The first week at home was difficult because I missed her
and wondered who am I going to talk to now. "Parent-toparent support has been shown to be a valuable tool in
enabling capacity to cope [50], which in the current study
did not appear to be encouraged or facilitated in different
hospital
accessed
by
the
mothers.
Apart from the agencies and individuals who were offering
support, two attributes emerged that were highly valued by
the mothers, namely "Hearing" is used in this context to
signify a true understanding of the person rather than
merely affording them time through listening.
Experiencing a sense of being "heard" or understood has
been identified as a powerful positive influence on people's
ability to make meaning of their lives [51]. For the mothers
who took part in this study, the perception of truly being
heard was seen as an enabler of capacity to cope: "I think it
would be amazing for them (doctors) to... actually sit and
read through what the experiences are like..." The second
attribute, being offered hope, was closely linked to a need
to see a way forward, or a plan for the future: "Just give
them (mothers) that hope and they will push forward." A
discourse of hope also emerged from a study by Thorne et
al. [3]. They found that healthcare professionals often
failed to understand the significance of recommending
gastrostomy placement to parents in their study, which
also was found in the current study, was that it signified an
end in the current study, was that it signified an end in the
hope of recovery for a child ("... initially I was very
resistant to the idea because it sort of felt like that was the
end, you know, only very sick people or people close it
death goes onto tube feeding"), which may be perceived by
healthcare professionals as irrational refusals of enteral
feeding.

R. Hewetson, S. Singh: Mothers of Children with Feeding/Swallowing Difficulties

The Continuing Journey: Negotiating Balance.

The mothers were engaged in an ongoing process of
negotiating personal meaning as they "got used to" and
"adapted to" their changed lives but did not necessarily
reach complete acceptance. The current study supports
findings of Calhoun et al. [43] by also identifying growth
that occurred within three domains, i.e., changes in
perception of self, changed relationships with others, and a
changed world view that included a deeper appreciation for
life and setting of new priorities. Their experiences
became a philosophical, spiritual, and emotional journey as
they developed an increased degree of introspection, ability
to examine, question, and redefine their beliefs: "Because
it is very easy to believe and trust when everything is fine,
but when it is not! I just think that, that is how your
character is built... but definitely my faith is much
stronger." Focusing on the present and accepting undertainty and change as a means to reach personal growth
emerged from the stories: "...if we embrace the changes, I
think we grow, otherwise we do get stuck." While Judson
[39] found that the mothers in her study refused to dwell
on the past, in the current study the mothers reached a
point where they could balance acknowledged losses with
a future-focused outlook. Being the mother of a child with
chronic feeding difficulties therefore afforded apportunities
for increased introspection which resulted in practical,
emotional, spiritual, and philosophical growth. The current
study supports the premises of post-traumatic growth
theories: that experiences of loss can act as a catalyst for
personal growth [42].
Conclusion: The Ebb and Flow of Deconstruction and
Reconstruction.
Professional journals and popular media are filled with
apparently contradictory statement focusing on either the
positive [52, 53] or negative [40, 41] implications of
parenting a child with special needs. What emerged from
the stories of the mothers in this study was that the positive
and negative experiences were not mutually exclusive but
often co-occurred. They spoke of increased demands and
stress associated with caring for a child with chronic
feeding difficulties while at the same time giving voice to
their increased personal resilience and ability to cope. The
journey continues as the mothers move between
contradictory feeling of acceptance and denial in an
ongoing negotiation of balance-seeking in term of both
emotions (strength and insecurity) and opposing roles

(mother and caregiver). The process appeared to be

cyclical in the sense that it was not a direct path toward
reconstruction without, at times, returning to the feeling
associated with deconstruction. This ongoing journey
stands in contrast to theories emphasising the need to reach
an ideal of complete acceptance of loss as is described in
stage theories of grief [54]. The presence of both strength
and perception of "brokenness" and how these mothers
managed to deal with such opposing experiences can be
understood in relation to a continual balancing of loss with
a focus on positive outcomes. What in fact emerged was
that the mothers' experiences and adjustments to a state of
unbalance were the driving forces that often resulted
I positive personal growth. The phenomenon of being the
mother of a child with a chronic feeding difficulty
continues to be a transformative experience in which posttraumatic growth co-occurs with chronic sorrow.
Implications and Recommendations.
It is hoped that this study will stimulate and guide
engagement with mothers who are providing home-based
care. While the study has been delineated within the
context of public healthcare, it is believed that the findings
will add value to all healthcare, professional and
organizations involved in the care of children with chronic
feeding and/or swallowing difficulties. To support families
one needs to be aware of how mothers experience their role
as
the
primary
caregiver.
Empowerment of mothers will require a combination of
approaches to meet both practical and should actively gain
insight into a mother's experiences by creating an
environment in which Require both " humanity and
expertise" [55] from healthcare professionals should
involve truly "hearing" the mother and not discouraging
the hope that she has for her child, despite having to offer
truthful information about a child's prognosis. Those
involved in the care of children with chronic feeding
difficulties can potentially facilitate the process through
which a mother redefines herself and how she construct
meaning regarding her child. A shift in focus from the
disability and medical complications toward identifying
abilities in the child could be fostered. To support mothers,
healthcare professionals need to be aware of the pervasive
and persistent feeling of loss experienced due to an
inability to feed a child orally or with ease. This awareness
of the emotional reaction to enteral nutrition is crucial
when informing mothers of feeding strategy to be
implemented. Furthermore, practical needs in relation to
adapted feeding strategies should be met by allowing for

R. Hewetson, S. Singh: Mothers of Children with Feeding/Swallowing Difficulties

sufficient time to demonstrate and facilitate acquisition of

skills, verification of understanding is crucial, and followup assistance (e.g., referral to respite care, support groups,
relevant literature) must be provided. Unanswered
questions about dysphagia has serious implications as it
reduces the mothers' ability be spent in describing the
nature of swallowing difficulties and ideally should be
accompanied by written and pictured/video information
and encouragement of questions. Parents should be
involved in evaluations of swallow safety so that specific
recommendations may be accepted and optimize carryover
to the home environment. Mothers appear to have the
capacity and desire to play a role in educating and
supporting other mothers who are providing home - based
care for children with chronic feeding difficulties. An
awareness of the role that they could play in this regard
may act as a catalyst for the establishment of parent-to-

parent
support
groups.
The intention of this study was not it provide the final
word on the phenomenon, but hopefully to increase
awareness of the need for further research aimed at
improving service delivery. Little is known about the
impact of providing home-based care on the mother's
construction of meaning for her changed role and life. It is
hoped that the analysis of the structure and processes of the
mother's experiences will add to the development of theory
concerning this experience and in defining effective
practice.