1242929
research-article2024

GQNXXX10.1177/23333936241242929Global Qualitative Nursing ResearchCurrie et al.

Single-Method Research Article

“Unable to Feed My Hungry Child”:
Experiences of Mothers Caring for
Children With Prader-Willi Syndrome

Global Qualitative Nursing Research
Volume 11: 1­–12
© The Author(s) 2024
Article reuse guidelines:
sagepub.com/journals-permissions
https://doi.org/10.1177/23333936241242929
DOI: 10.1177/23333936241242929
journals.sagepub.com/home/gqn

Genevieve Currie1 , Andrew Estefan2, and
Vera Caine3

Abstract
Mothers’ experiences of caring for children with Prader-Willi Syndrome (PWS) is largely unknown. With no treatment for
PWS, parents undertake (extra)ordinary care practices to keep children safe from overeating and self harm. Knowledge of
these care practices could lead to effective interventions. Narrative inquiry was used to study everyday experience with
Canadian mothers. Participants cared for a child 3 to 17 years old who had hyperphagia. Participants were interviewed 8 to
12 times each over the course of a year. Narrative accounts were co-composed through a collaborative process of analysis.
Engaging with participants’ everyday experiences amplified complex care needs for families and gaps in health and social care
systems. Narrative threads focused on engaging in (extra)ordinary care practices, rigid care work to keep children healthy
and safe, tension from others while enacting these care practices, and difficulty conforming to social expectations with
childrearing and care work. Recommendations for practice and policy include (a) shifting from untenable care practices, (b)
reconceptualizing care work, and (c) alternative care models.
Keywords
Prader-Willi syndrome, rare disorders, neurodevelopmental disorders, mothers, children, lived experience, medical
complexity, narrative inquiry, Canada
Received October 11, 2023; revised March 8, 2024; accepted March 13, 2024

There is little known globally about mothers’ experiences
of caring for children with the rare genetic disorder, PraderWilli Syndrome (PWS). PWS requires lifelong care from
parents and others in meeting care needs (Miller et al.,
2011). While children are living with their parents, this care
requires keeping children healthy and safe from overeating
and self harm. For a mother living with a child who has
PWS, these care practices become ordinary. Yet, their practices are extraordinary in addressing the unusual behaviors
and the responsibilities to keep their children safe, as well
as affording them opportunities to interact with others
(Currie et al., 2024). As such, these become what we have
called (extra)ordinary care practices. There is a need for
nurses and other health care providers to understand the
everyday tensions, medical and social complexities, and
lifelong accountability and responsibilities of mothers caring for a child with PWS.

Caring for Children With Prader-Willi
Syndrome
Prader-Willi Syndrome (PWS) is a rare, complex neurodevelopmental disorder. Characteristically PWS causes substantial health, behavioral, and social challenges, with one
of the most difficult challenges being hyperphagia and
anxiety. Disabilities for children include cognitive, physical
1

Mount Royal University, Calgary, AB, Canada
University of Calgary, AB, Canada
3
University of Victoria, BC, Canada
2

Corresponding Author:
Genevieve Currie, School of Nursing and Midwifery, Faculty of Health,
Community and Education, Mount Royal University, 4825 Mount Royal
Gate S.W., Calgary, AB T3E 6K6, Canada.
Email: gcurrie@mtroyal.ca

Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons AttributionNonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and
distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages
(https://us.sagepub.com/en-us/nam/open-access-at-sage).

2
(mobility, speech, feeding, gross and fine motor challenges),
mental, and learning (Miller et al., 2011). Hyperphagia
involves a dysregulation of appetite satiation within the
hypothalamus and aberrant perceptions of and reactions to
food (Cassidy et al., 2012; Driscoll et al., 2017; Miller et al.,
2011). Hyperphagia symptoms include insatiety and food
seeking, which begins between ages 3 and 13 years and continue into adulthood (Heymsfield et al., 2014; Miller et al.,
2011). Children are predisposed to genetic obesity (Butler &
Thompson, 2000; Schwartz et al., 2021). Hyperphagia
requires hypervigilance from parents and caregivers
(Mazaheri et al., 2013; Tan et al., 2020). Children with PWS
also experience moderate to severe neurobehavioral issues
characterized by perseveration, repetitive behaviors, lying
and manipulation, arguing, and temper outbursts (Mazaheri
et al., 2013). To date there are no medical treatments for this
syndrome and families are often searching for physical or
psychological support to manage the complexities of child
development, behavior, and medical care (Tan et al., 2020).
After diagnosis of PWS, parents are often left to manage
the unrelenting manifestations of hyperphagia, anxiety, and
other medical and behavioral challenges with few supports.
With no known treatment for PWS, changes to physical and
social environments become necessary. Parents are instructed
to provide rigid practices by the medical community which
become part of necessary care work. Care practices are the
physical, social, and emotional work, largely taken up by
mothers, and are influenced by larger sociopolitical and
social factors (Armenia, 2018). Managing care practices
with PWS becomes very challenging for parents with the
need for rigid care practices in all environments and the risk
of life-threatening consequences with food in many social
settings (Allen, 2011; Bedard et al., 2023).
Mothers of children with disabilities often face barriers
and stigma from gendered and ableist ideologies of mothering and care with dependency (Huang et al., 2023; Kittay,
2011; Knight, 2013; Nishida, 2022; Piepzna-Samarasinha,
2018; Ryan & Runswick-Cole, 2008). Further, care for a
dependent child by mothers and families is undervalued,
unremunerated, and underestimated but essential in preventing institutional care, health care costs and expenditures, and
keeping children healthy and alive (Ennis, 2014).
Mothering is influenced by the “good mother” ideology
which is the most popular conceptualization of mothering
(Green, 2015). Mothers caring for children with disabilities
are even more affected when the stakes are higher with children who require continuous care needs. “Good mothers” are
responsible for the health of their children (Fierheller, 2022).
They campaign, advocate, and fight as warrior mothers and
superheroes against structural inequalities for services and
medical care for their children (Runswick-Cole & Ryan,
2019; Sousa, 2011). Mothers caring for children with chronic
conditions that require regular care, can rarely change the
medical and behavioral outcomes for their children. They are

Global Qualitative Nursing Research
placed in a conflicted position of keeping their children
healthy and alive with lifelong dependency on others.
Most care practices go unnoticed by others and are generally unknown for a child with neurodevelopmental challenges such as PWS (Tabatabai, 2020). These unique care
practices are essential to manage the hyperphagia, food certainty, food security, anxiety, and obesity their child will
experience. Many mothers restrict food and only offer it
within structured and predictable routines. Mothers offer low
caloric, low carbohydrate, and low sugar options (Butler et
al., 2019). Environmental management also includes withholding food, locking fridges and cupboards, managing
access to food in every setting, and always supervising the
child. Mothers care for their hungry children by denying
them food to preserve their health and wellbeing.
There is little research on the experience of parents caring
for a child with PWS within the global literature (Allen,
2011; Čagalj et al., 2018; Chaij et al., 2014; Reilly et al.,
2015). There is, however, a need for health and social care
professionals to understand how mothers, as primary caregivers, manage day-to-day care. This narrative inquiry
focused on the following research puzzle: What are the experiences of mothers caring for a child with Prader-Willi
Syndrome? What is it like to mother a child with constant
hunger and hyperphagia? How do ideals of good mothering
shape the experiences of mothers of children with PWS?
During this inquiry, the shared stories and dominant social
stories of parenting, motherhood and care practices were
expanded and reshaped through ongoing conversations with
participants.

Methods
Narrative inquiry is situated in the work of Clandinin and
Connelly (2000) and is the study of experience. Narrative
inquiry is both a methodology and a phenomenon under
study (Connelly & Clandinin, 1999). Narrative inquiry is
influenced by Dewey (1938), who believed knowledge arises
from inquiring into everyday experiences. As such, the
knowledge sought by narrative inquirers is situated in everyday happenings for people who are living their lives.
Everyday experience influences how we see others, our
futures, the world, and ourselves (Clandinin & Rosiek,
2007). Dewey (1933) noted the importance of being aware,
present, and curious about experiences. Dewey argued for
studying experience unfolding over many moments in time,
as an authentic source for constructing knowledge, understanding, and enacting social change (Caine et al., 2019;
Clandinin & Rosiek, 2007). This everyday knowledge is
seen as useful and purposeful as we interact and respond
(Dewey, 1925; Rorty, 1999). As well, inquiring into everyday experience provides insight into social, cultural, and
political influences surrounding experience (Clandinin &
Rosiek, 2007).

Currie et al.

3

Recruitment

Data Analysis and Interpretation

Mothers were recruited from the Canadian Foundation of
PWS and a provincial PWS Facebook parent group using
purposive and snowball sampling (Creswell, 2013); they
were invited to participate if they were caring for a child with
genetically confirmed PWS from various regions in Canada.
Participants engaged in conversations with the first author,
who was conducting her doctoral research, over a 12-month
period. With the onset of COVID-19 and the long duration of
the pandemic, conversations shifted from in-person to virtual. Four mothers of children with PWS participated in the
study to tell, retell, live, and relive their stories and provided
a composition of life experiences (Estefan et al., 2019). The
typical sample size for narrative inquiry is three to five participants (Clandinin, 2013) which offers longer-term engagement with participants and depth of insight into experience,
rather than breadth of agreement about a phenomenon
(Lessard et al., 2015).

Through an engaged and collaborative process of analysis,
field texts and interim research texts were co-composed
within a cycle of clarifying, reading, rereading, and interpreting field texts alongside participants (Clandinin & Connelly,
2000). Narrative accounts were co-composed with participants (Clandinin et al., 2015). This was done by sharing texts
with mothers, and they provided input and feedback into the
interpretation of the transcripts and writing of the text
(Clandinin, 2013). Attention was given to the narrative
inquiry dimensions of sociality, place, and temporality.

Data Collection and Field Work
Prior to commencing the study, written informed consent
was obtained. Ethics approval was granted from the
University of Calgary (CHREB # 21-0761). The inquiry
involved 8 to 12 conversations (60–90 min in duration) with
each mother over the course of a year, beginning in July
2021. Within the inquiry, connections, time commitments,
and boundaries were negotiated with participants (Clandinin,
2013). Participants could withdraw from the study at any
time; they provided ongoing consent to be part of the study.
Conversations were audio recorded and took place over a
secure internet platform. Conversations were transcribed by
the first author and data were saved on a password protected
server.
Mothers were asked to reflect on their experience.
Questions covered a range of topics regarding daily events or
happenings that related to management of hyperphagia and
care practices involving food. For example: “Can you
describe how your daughter displays hyperphagia?” “What
was the experience for your child and family in celebrating
Thanksgiving with extended family?” “Can you tell me
about your experience of the next-door neighbor’s birthday
party that your daughter was invited to?” Data or field texts
(Clandinin & Connelly, 2000) were composed from transcripts of research conversations, letters mothers had written
to others about their feelings surrounding care practices and
PWS, field artifacts such as pictures, mementos, personal
items (Clandinin, 2013), and mothers’ own journal writing.
Some of these artifacts were used in the narrative accounts
produced in the study to highlight experiences of daily life
(Clandinin, 2013). Names of participants were changed for
anonymity.

Positionality Statement
This study was completed by the primary author as part of
the requirements of her doctoral thesis. She is a white female,
born and raised in Canada, and holds several degrees in nursing. As a researcher she brings the experience of her gender,
social, economic, and cultural lenses, and her professional
development to her work. She recognizes her positionality is
shaped by her privilege and access to resources, and she
stives to be aware of her own biases and assumptions and
recognizes how these may shape her research.

Participants
Mina, Cherie, Helene, and Giuliana told their stories and
shared everyday human moments that added to our learnings
and understandings of caring for a child with PWS. All participants lived in Canada, but in different provinces. All the
mothers identified as Caucasian. Three of the families had
French as their first language in addition to English. The
mothers were between 35 and 50 years of age and identified
as she/her. The mothers all had high school education and
three mothers had some postsecondary education. The mothers were married, but one lived apart from her husband
through the week because of her husband’s employment. All
mothers had some employment but managed the care needs
of their children with PWS, which affected their type of
employment. Two families experienced some financial pressure with caregiving needs and lack of maternal full-time
employment. All mothers were the primary caregivers for
their children with PWS within their families. Fathers of the
children were involved in their children’s care but there was
delegation of sibling care with the care responsibilities of
PWS. As well, navigating and coordinating daily care and
medical and social care appointments most often was the
mother’s responsibility. The children with PWS were all
diagnosed several weeks after birth through genetic testing
and ranged in age from 7 to 17 years of age at the time of the
study. Three of the mothers had other children without PWS.
All children required 24/7 caregiving from the family and

4

Global Qualitative Nursing Research

others such as in home, school, and community environments. None of the children with PWS could be left unsupervised at any time.

Results
Engaging with and listening to participants’ stories over time
revealed tension and complexities within the experience of
caring for children with PWS. In this inquiry the daily experience of caring with children living with PWS was explored
with four mothers and the complex social relations and emotional work of mothers was made visible. Narrative threads
resonated across participants’ stories and showed some of the
challenges in caring for a child with PWS. Mothers’ stories
provided a window into the reality of day-to-day experiences
managing the complexities of PWS with behaviors such as
hyperphagia and anxiety, food insecurity and lack of food
certainty (children being anxious that there would be no food
even if there always was), and health risks associated with
PWS such as obesity and death.

Engaging in (Extra)ordinary Care Practices
As holders of knowledge (Rich, 1976), mothers shared care
practices which had to be adapted and transformed so their
children could engage and participate in the world. These
were ordinary everyday practices for mothers but were
extraordinary for others. Nuances were identified within
these threads and are grouped under (extra)ordinary care
practices and include overwhelming rigidity, challenges with
care in relation to food, hyperphagia and medical care, managing behaviors, and social conformity.
Overwhelming Rigidity: “We Have Rigid Social Norms”. With
the diagnosis of PWS, mothers were instructed by physicians
and nurses to use specific rigid care practices to manage
hyperphagia, prevent overeating and the onset of gross obesity, and other associated health problems. When given the
diagnosis of PWS, participants outlined the overwhelming
focus on the risks of hyperphagia, insatiation, and food seeking. The mothers were fearful about their child’s weight and
behaviors if they did not uphold rigid care practices. Helene
described her reaction when the geneticist gave her medical
literature about gross obesity to read.
I think when I read that document I wasn’t thinking about Dani,
really, I was thinking about myself—you know what I mean? It is
an awful thing to say, but in hindsight it was a very self-centered
reaction where I am going to be living with this monster and I was
afraid of who she was going to become and that she was my child.

Within the mothers’ private worlds were stories of mothering and caring for children who were always hungry and
trying to get food. Mothers established practices where food

was restricted and only offered at specific meal or snack
times with structured and predictable rigid routines. Food
was not used to satiate an appetite or nurture or comfort a
child. Mothers had to be rigid about the types of food offered
and the environmental management of food. Cherie shared
about the rigid norms in her home.
I think the hyperphagia existed and exists now as well, but I
think we have these rigid social norms that we have created
within our house that allow us to have a little less anxiety, stress,
and focus around the hyperphagia. We had a period where she
was stealing things from our pantry and we locked, and we had
a period where she was eating the cat food and we locked that as
well.

In the families there were no second helpings offered, strict
portion sizes were used, and food was not offered if not on a
strict schedule.
We were told by the PWS association to never give her seconds.
So, from the age of 18 months, we never have. We don’t offer her
any food between meals and won’t let others give it to her either.
We have been called out by others that surely just this once won’t
matter. Well, it does matter, as she won’t forget about it.

Challenges in Caring for Children in Relation to Food: “Food Dominates My Thinking.”. The focus of care for mothers in managing their child’s hyperphagia was supervising access to food
in all environments to keep their children healthy and alive.
Mina shared the need to lock her kitchen door.
I don’t know if I am doing the right thing. I know for certain for
my piece of mind so that I can sleep in my house I have to lock it
[kitchen door], otherwise she would be . . .I feel like she would
just eat all the time, right?

Participants’ children were always hungry and often seeking
food. As an element of caring, mothers had to deny food to
their hungry children. Mina relayed the unexplainable tension of not being able to feed her hungry child.
That is the worst part, I think, like I can handle the stupid
meltdowns, the hundreds of questions, the rigid behaviours, the
weird nuances, but the crying for food and having to deny your
kid that basic need to survive, and it is so real for them.

Helene also depicted the focus of food in her home and the
impact on her experience as a mother with rigidity around
food practices. “Food dominates her [Dani’s] thinking, and
at a certain point I realized that that is my life. Food dominates my thinking.”
In addition to tension with behaviors and food regulation,
there was also tension for mothers outside of the home with
hypervigilance and social management required in social

Currie et al.
surroundings. Helene’s life was unequivocally changed with
the focus on food security and managing every environment
for Dani.
I couldn’t relax, I couldn’t, even in a place where they were
trying to make it safe for them, ultimately it was chaos, you
know? I am exhausted after that and then it is time to come home
and I don’t want to go to people’s houses anymore, I don’t want
to socialize! It is much easier to have people over here at our
house where everything is just controlled.

Food is often considered a way to connect and relate with
others through caring and sharing. Helene further expressed
the challenges with venturing into public with a child with
PWS in relation to social expectations around food. “There
are events happening and people invite us, but I don’t want to
go places because everyone is just itching to give kids a cupcake, or candy, or a donut or something and I feel afraid, you
know?” The management of hyperphagia required a commitment to change everyday feeding practices for everyone
in the family before symptoms began to appear. Mina specifically shared her rigidity around food with early adoption
of care practices which included extended family.
Like for us we knew that it was going to be hard for our family
to adjust to the new food style, right? So we started right away
[shortly after diagnosis] in holiday gatherings and things like
that changing our patterns so we would have a really good
foundation with the family so when it was a problem with Sadie
it wasn’t a problem with Sadie and the family trying to get them
to change their traditions, right?

To care as a mother with a child with PWS, was to uphold
rigid rules and regimes even when others questioned the
inflexibility of the rules. Mothers had to attend to the dangers
of food for their children. Mothers shared that family, grandparents, friends, schoolteachers, healthcare providers, and
respite workers did not always understand the care needs for
a child with PWS. This led to social tension for mothers and
for others. Cherie elaborated on the associations others have
with food, even when they were aware how food was a trigger for their children. As Cherie shared, “I don’t know, but
there is this attachment to food and love or something, and
they [family] feel that is the way they need to express it. . ..
there are all these emotions attached to food.”
There was also a sense of disbelief and a lack of recognition of the struggles by others when they witnessed a glimpse
into families’ private lives. Helene shared her embarrassment
with having others over for dinner—memories of her daughter having a melt down at the dinner table resurfaced. “I kind
of want to be like, “She is not a monster!” You know, she is
being monstrous, but she is not a monster!” This was the
third time the word monster was used by Helene as a connotation to how others outside of the family might view her
child with PWS because of incoherent behaviors from
expected social norms. Giuliana also described her sister’s

5
discomfort about her parenting practices and not understanding the full weight of caring for a child with PWS. Her sister
would say to her “I can’t believe a mum would say that to
their child.” Giuliana felt others expected parents of special
needs children to be responsible for their children and manage all the challenges.
I think you will never feel as judged as a parent, and then you
add special needs parent, and you are just judged so much more
. . . it all falls back on us and then of course we are going to feel
like shit because it is something we didn’t do right.

Giuliana had decided to not be as restrictive with her
daughter around food choices. She felt her daughter’s
behaviors were easier to manage if she ate what other people were eating and had more food to eat. There was tension when Giuliana described her decisions not to follow a
strict diet regime, nor obsess over food labels, and to follow different practices than other mothers within the PWS
community. These decisions also came with shame and
self-judgment. “I am on the other camp, like she has had
cake, she has had candy, she has even had chocolate milk,
and then I feel this small, you know [gesturing with her
fingers]?” Conversely, Giuliana discussed her thoughts
about other mothers’ decisions to be restrictive with food
choices for their children. “I would probably judge other
mums who are too restrictive because I think it is going to
bite them in the ass in the end, but they would probably
judge me because of Keely’s weight.”
Care practices surrounding management of hyperphagia
were particularly difficult because many social activities are
connected to food. Socializing and celebrating with food are
considered a normal part of everydayness. Giuliana relayed
there was food everywhere. “And it is all about the food.
Every get together.” Helene referred to food as “landmines.”
She discussed her angst with the lack of food security and the
risk for her daughter to participate in social activities. She
shared that the onus was on her to not miss anything as inevitably other parents missed things.
I feel like it will come across that I am telling people that there
is something wrong with what they are doing because of our
experience, and it has to come across that way because the
whole point is like, you know, your house cannot be safe enough,
it just can’t, because you don’t even see the things that are a
danger as a problem.

Giuliana also communicated her frustration when others
invited them to their houses and their kids were eating different food choices then her daughter could eat. “I am sure my
kid is going to love some applesauce when you guys are
chowing down on an ice cream sundae!” Mina shared her
efforts to manage the social environment with others which
led to further social isolation. “We have started asking people, like, hey, we can’t come if you have food all over your
house. We just can’t.”

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Global Qualitative Nursing Research

Hyperphagia and Medical Care: “What Did I Do Wrong?” Mothers followed prescribed medical and social rules of caring for
their children which were monitored by the medical and
social care communities. There was tension around managing their children’s weight. Growth charts and frequent
weight checks reduced mothers’ hard work and hypervigilant
caregiving to parameters of weight and height on a growth
curve. Giuliana shared the focus on weight, “We gauge how
well we are doing as a mother with the weight of our kids
because that is all we know about with Prader-Willi Syndrome, that is where all the focus has been, on the weight,
right?” If a child was seen as overweight it was likely an
indication of poor parenting management as communicated
from the medical, school, and PWS community. As Giuliana
shared, “She is a big girl. . . If you look at my girl and I am
like, what did I do wrong? It gives you an indicator but
doesn’t give a true indicator maybe of the types of bodies that
PWS represents.”
With such a focus on hyperphagia with PWS, mothers
indicated they felt weight had become a measure of whether
parents were correctly managing hyperphagia as parents.
Mothers said they compared their children to other PWS
children to assess if their child was typical within the PWS
community. A child carrying extra weight was a visible indicator of whether mothers were being stringent enough and
their child had access to too much food. Giuliana described
how weight was a measure of mothering ability particularly
within the PWS community. “We gauge how well we are
doing as a mother with the weight of our kids because that is
all we know about with Prader-Willi Syndrome.”
Against the norms of care work for mothers with a child
with PWS, Giuliana decided not to restrict some food options
so her child would not miss out on normal interactions with
others around food. Giuliana expressed the tension to not follow strict regimens that excluded her daughter from doing
things other kids could do. She did not believe in providing
the suggested structure, routine, and schedule of eating and
meals for her daughter, as this did not prepare her daughter
for unexpected changes. Giuliana was comfortable with her
daughter being a little overweight as she felt it helped her
daughter not to have major behavioral issues of food seeking
and acting out from hunger.
All I can do is I would rather she be a little bit overweight than
not have the major behaviours. I would rather she be bit
overweight and not food seek. That is what I would want. Now
would I want her to be 50 pounds under? Sure. Will that be
possible? I don’t know.

Giuliana’s decision to not restrict food options was challenged by physicians, nurses and others as insufficiently caring for her child.
When physicians and nurses inquired about hyperphagia
as a symptom of PWS, mothers expressed there was still no
support. As Helene shared, “What are you going to do if I tell
you yes, it is terrible hyperphagia? So, what do you do for me

now? You just take note of it?” Mothers expressed frustration
that, beyond focusing on weight alone, there was no further
support for managing the unrelenting hyperphagia and
anxiety.
Caring for Children’s Challenging Behaviors: “We Have Gone
Through the Grabbing Off People’s Plates”. Mothers also shared
(extra)ordinary practices associated with managing anxiety,
self-injurious behaviors, argumentativeness, inflexibility,
rigidity, and poor emotional control with temper tantrums,
aggression, and meltdowns. These behaviors were persistent,
disruptive, and overwhelming in everyday life. (Extra)ordinary practices were embedded in rigid routines that were
normalized and ordinary within the PWS community. Mothers shared many small moments of trying to engage in everyday life with a child with PWS. Giuliana shared, “Behaviors
can escalate. The behaviour, sometimes everything is going
well and then suddenly a switch goes off and you are like,
why are you acting this way?” These routines were established and maintained in the family and were adhered to as a
way of reducing meltdowns and reactions. As Cherie shared,
“We have a sequence of events that is listed, even written
down, and we function with a sequence of events.”
These behaviors carried on in the home. Home was a
place for temper tantrums, arguing, and perseveration about
minor issues, severe skin picking, and aggression. Cherie
shared her daughter’s self injurious behaviors.
We have gone through the grabbing off people’s plates and the
screaming and the yelling. I guess that is where we sit with
hyperphagia that it is there, but I would not say that is our
greatest concern at all, like I would say the anxiety and the . . .
some of the aggression are far greater—like aggression towards
herself and her self-mutilation—I would say those behaviours
are far more disconcerting for us than hyperphagia.

A home environment is typically linked to comfort and
feeling safe and relaxed. In the case of PWS, common mothering practices included close monitoring of children and
elaborate management of all home situations to keep children safe from life threatening behaviors.
There was also tension that socializing and inviting others
into the space could reveal the hidden difficulties of PWS
such as temper tantrums at dinner, obsessing about the menu
options, trying to grab other people’s food, demanding more
food, and not giving up on these requests. For the mothers in
the inquiry, this led to social tension and ultimately isolation.
Mothers were reluctant to expose their private space. Mina
shared that behind closed doors in her home was where Sadie
displayed the most behaviors.
Sadie on lots of occasions can appear normal, right? And then it
is only kind of behind closed doors that she kind of lets loose!
And then it is like when you try and describe it people are like,
well that is not the image of her I see here, and they don’t connect
the dots.

Currie et al.
Within the home environment, there was no sanctuary, nor a
soft place to land. There was social pressure to not discuss
these behaviors that often escalated around normal routines
and not exhibit them in public spaces for fear of a reaction
from others.
Pressure to Meet Care Practices: Social Conformity and the
“Mom Mafia.” The mothers in the study also discussed having select friends and family members to share holidays
with and manage the difficulties with hyperphagia and anxiety. Other friends and family had expressed discomfort with
the rigid food routines or were not comfortable with the
(extra)ordinary care practices. Mother’s stories revealed
that they were often living in circumstances that were radically different from how other families lived their lives. This
became alienating for the mothers who were living outside
of “normal” narratives of family. It was also isolating for
those who were outside of these experiences and did not
know how to relate to them. The mothers shared the importance of building other connections, but they also highlighted the difficulty in doing so. Mina shared some of the
alienation: “I don’t want all my friends to only be parents of
kids with special needs. I want to have friends like the
friends I had before I had Sadie.” Mothers worried that their
children would be rejected by others because of their incoherent behaviors. As Mina said, “Oh God . . . will people
still love her if they see her like this? So, it is a bit of protecting of her, right?”
Parents used Facebook parent groups for advice and guidance from other mothers since little was known about treatments and interventions for PWS. There was a sense of
vulnerability and reliance on others’ experiences since there
are so few people to whom they can turn. This reliance could
also lead to judgment if a mother did not follow the suggested prescribed regimes for diet, schedule, and behavior
management from the PWS community. This judgment
sometimes brought isolation, disconnection, and fracturing
of relationships with others in the community when mothers
tried something different. This was particularly troubling for
the mothers who were practicing untenable care practices for
their children and yet experienced judgment within their own
PWS community when it was perceived they were not being
“good enough mothers.” Giuliana mentioned she was a
“lurker” instead of a full-time visitor to the Facebook groups
because of her experience of isolation and exclusion.
Giuliana talked about alienation from others on the Facebook
group for choices made about food security and locking the
fridge. Helene also talked about how food management
choices for children with PWS was a polarizing topic due to
different perspectives on low carb, low calorie, sugar free,
ketogenic, etc., diets. There was no empirical evidence if one
diet was better than the other in curbing hunger and blood
sugar surges, but there were strong opinions from the mothers on Facebook groups.

7
I do find the Facebook world kind of a scary world too because
there are some opinions, thoughts and feelings in those spaces I
find alarming and disturbing. . . Yeah, I think that choosing the
sugar-free diet is weird because I did choose that diet, and like
technically it is a choice, and I feel that is a source of much of
our social isolation, choosing to do that because sugar is so
ingrained in our society.

Cherie explained why she thought parents were judgmental
about each other’s decisions on how to manage the syndrome.
“So, in judging each other, aren’t we defending ourselves?”
Giuliana had chosen to make different food choices for
her daughter than other mothers on the Facebook group. She
felt her daughter had less maladaptive behaviors if she was
not as rigid around diet choices and treats. She felt her individual experience and her knowledge of her child were not
honored within the PWS community. She had sought support
from several other mothers who had children who were overweight and were disillusioned by how they were treated on
the main Facebook group. Giuliana believed they needed a
judgment free zone and a place to share their realities, so
they formed their own small group.
And then I created a little bit of a Facebook group with three
mums who are of similar feelings like, for Keely that we are little
bit with kids on the heavier side, but like-mindedness in terms of
that, and where this is a judgement-free zone, where you are like,
“Oh yeah, they got into that,” like got into the candy or treats.

Mothers also expressed that few parents shared in the
Facebook groups if their child was doing well because of
possible resentment and jealousy within the PWS community. Cherie stated: “You are scared to tell the world how bad
it is, but you are scared to tell the world how good it is
because those are normal feelings we have.” When asked if
she would share on Facebook if her child was doing well
Mina said, “I mean no. I probably wouldn’t feel comfortable
because I would feel I was maybe perceived as boasting, or
something.”
Giuliana shared why some mothers did not reach out for
advice about food management from other mothers on the
Facebook group, “They are afraid to go on Facebook because
of the Mum Mafia. The Mum Mafia will be there with their
pitchforks, you know?” Overall, the findings revealed polarization from others when mothering a child with PWS.
The mothers’ stories held insight into the work of nurturing, caring, sustaining, and contributing to the care of a child
with PWS and the (extra)ordinary care practices that are
involved with the tension to be a “good mother.”

Discussion
The mothers’ stories troubled, reshaped, and refashioned our
understanding of the difficulties in maintaining care practices for a child with PWS. Although these practices were

8
ordinary (Dewey, 1925) and expected as part of care work
for mothers (England, 2005), they were (extra)ordinary considering the intricacies and peculiarities of caring for a child
with PWS. For a mother living with a child who has PWS,
these care practices are part of an ordinary day. Yet, their
mothering practices are (extra)ordinary in addressing the
unusual behaviors and the responsibilities on mothers to
keep their children safe, as well as affording them opportunities to interact with others. Longitudinal engagement with
mothers in this inquiry showed the nuances of everyday life
when caring for a child with PWS. The mothers’ stories add
to a greater understanding of the unique challenges for the
child with a complex disorder and their family in participating in ordinary life. The findings extend our understandings
of PWS beyond medicalization of the disorder and illustrate
the responsibilities, accountabilities, and care work required
so children with PWS can participate in life.
The inquiry provided an amplification of the intersection
of the care needs of children with PWS and the gaps in health
and social care systems. The tensions and challenges that
were exposed in the inquiry spoke of inadequate support for
families. Building on the mothers’ experiences, three key
recommendations and implications for re-envisioning care
work were co-developed, namely, moving beyond untenable
care practices, reconceptualizing care work, and providing
appropriate support through social ecological models of care.

Untenable Care Work and Care Practices
Mothers’ stories of difficulties adhering to medically and
socially determined care practices in the management of
PWS—as suggested by medical providers and reinforced
within the PWS social community—warrants attention.
Mothers of children with PWS are caught in a bind of being
unable to offer satiation and nurturance to their hungry children, and having to uphold rigid care practices for their children that go against more typical mothering practices
(Ruddick, 1989). The associations between socially constructed concepts like mother, food, and care coalesce as
“good mothering but are fraught with tension and contradictions when caring for a child with PWS.
Mothers shared they felt judged socially and morally if
they could not manage or sustain high standards of care, an
experience that has been observed among other mothers caring for children with chronic health problems (Brehaut et al.,
2019; Woodgate et al., 2015). If their child was carrying too
much weight, this was seen as an obvious physical difference
from normative and desirable standards, because responsible
care is framed as the need to restrict children’s food to avoid
childhood obesity (Maher, Fraser, & Lindsay, 2010). In addition, children with PWS have one of the highest incidences
of maladaptive behaviors over most other neurodevelopmental disorders (Kayadjanian et al., 2018). Mothers in this study
expressed many instances when they could not meet

Global Qualitative Nursing Research
unrealistic, untenable care practices and management of
behaviors for their children. They also felt judged by health
and service care providers (physicians, nurses, and disability
workers) if they voiced this difficulty. This finding aligns
with the work of Sprague and Hayes (2000) who discussed
socially preconceived expectations about care work, how
these care practices are devalued, and dependency on women
to silently fulfill these roles. In this study, mothers who did
not adhere to the care practices also felt on the periphery of
the PWS community and isolated both medically and
socially. Conversely, mothers also felt on the periphery of
neurotypical communities if they rigidly upheld care practices as others did not understand they were essential to the
health of their children.
Parents who did not comply with the rigidity of the practices often lacked support to manage overwhelming constraints in living one’s life. An onus on the mother and family
to adhere to rigid practices without the necessary support led
to overwhelming responsibility and expectations that were
perceived to be unrealistic and unattainable, and ultimately
fostered guilt and shame. Friedman et al. (2021) and Ennis
(2014) referred to specific behaviors and expectations of the
“good mother,” particularly with the intersection of identities, in this case mothering and lifelong caregiving.
Disciplinary knowledge must shift and adapt to move in
ways which are supportive for caregivers who must maintain
rigid care practices for their children to be healthy. Nurses
and other health care providers need to consciously resist
dominant medical and social discourses that hold mothers
and parents of children with PWS responsible for their children’s weight, behaviors, and overall health outcomes
(Friedman, 2015). An unhealthy weight gain might be an
indicator of families needing more support in managing
behaviors, and a larger issue than weight management (Reilly
et al., 2015).

Reconceptualize Care Work Beyond
Individualized Care Practices
Care work must also be reconceptualized. Mothers expressed
social isolation and lack of regular engagement with others
outside the home from managing hyperphagia and adherence
to care practices. There are other complex neurodevelopmental disorders that involve difficult care practices and
have similar medical, social, and behavioral challenges to
PWS (Baker et al., 2018; Gardiner et al., 2018; Huang et al.,
2023; Reilly et al., 2015). Neysmith and Reitsma-Street
(2005) suggested that, socially, the responsibility and ultimate care work of women includes feeding and providing
nourishment to children and their families. However, our
findings extend these understandings of mothering and caring for a child with PWS related to food and nourishment and
highlight the need to reframe how we think about care when
food is both a need and a source of potential harm.

Currie et al.
Mothers in this study were expected to manage their
child’s disability often in isolation and often could not have
the same kind of social relationship and social experiences
with their children or with others. This aligns with other literature on the experience of care work when mothering a
child with disability (Blum, 2007; Brock et al., 2015;
Tabatabai, 2020). Care work needs to move beyond an individualistic response where families are solely responsible for
managing and caring for a child with complex needs, to an
interdependence model of care which is relational and reciprocal (Tabatabai, 2020). According to Page et al. (2020),
most care practices in North America, Europe, and Australia
for children with complex needs are the responsibility of the
immediate family at home. This can be isolating for families
who live away from extended family and social support networks (Bradshaw et al., 2019; Woodgate et al., 2015). We
recommend that research and practice priorities could be
redirected to co-designing health services and systems with
families, through ongoing conversations, that are meaningful, inclusive, and provide a space to share perspectives
(Fayed et al., 2018; Smits et al., 2020).
This shift to a relational way of knowing includes discussing strategies and approaches that work for families and can
influence everyday health and well-being. For example, this
could include a shift from focusing on a child’s weight and
growth parameters to discussion of participation in everyday
life and supports that parents would find helpful and meaningful based on their choices and abilities (Georgiades &
Kasari, 2018). This perspective aligns with P. L. Rosenbaum
and Novak-Pavlic (2021) who suggested a move toward
determining interventions that support the child and families’
developmental capacities, rather than concentrating on
limitations.

Support Through Social Ecological Models of
Care
(Extra)ordinary mothering practices are more than adaptation and resilience to difficult, sometimes unimaginable circumstances. These practices are also about parenting amid a
lack of support for mothers of children with complex neurodevelopmental disorders and a reliance on individualistic
approaches to managing associated care needs. There has
been little examination of larger systems and structures that
continue to hold mothers and families responsible for unrealistic care needs (Knight, 2013). Our study suggests there
needs to be a holistic and integrated outlook on health and
well-being for the family beyond medicalized narratives (P.
Rosenbaum & Gorter, 2012).
At a community/societal level, there is a need for greater
acceptance of children with neurodiverse behaviors
(Georgiades & Kasari, 2018). This acceptance needs to be
paired with realistic and effective supports so children and

9
their families can engage and participate in everyday life (P.
Rosenbaum, 2009). Neurobiological impulses mean children
with PWS have little success in controlling or stopping their
own behaviors (Singh, 2022). Therefore, when it comes to
managing behaviors such as hyperphagia (Thomas, 2021), a
shift is needed away from pathologizing to building and providing appropriate supports, structures, policies, and systems
to support mothers and manage difficulties.
Targeted policy interventions could include reconceptualizing care models to remove systemic barriers to ensure
PWS children have equitable opportunities to reach their
maximum level of health and wellbeing. This includes a
view toward social ecological models of care that consider
the relationships between the physical, mental, and social
health of children and families that encompasses the entire
life-course. These models require integration of family,
community, environment and health and support systems,
social structures, and policies that assists mothers and parents in the care of PWS and participation in society (Bach,
2017; Filipe et al., 2021). This also involves disrupting neoliberal ideologies of individual responsibility and resiliency,
toward developing systems of support as a collective social
responsibility to support and sustain interdependence for
mothers, children, and families caring for a child with complex needs (Brant, 2014; Douglas et al., 2021; O’Reilly,
2016; Piepzna-Samarasinha, 2018; Runswick-Cole & Ryan,
2019; Tabatabai, 2020). Fulfilling recommendations such as
these will require mothers’ voices in the co-design of systems of support through research, policy, and practice in
addressing care priorities and an integrated outlook on
health and well-being (Pozniak et al., 2021; P. Rosenbaum
& Gorter, 2012; Smits et al., 2020). Our study also suggests
this includes managing conflicting and changing individualized priorities for the family caring for a child with PWS
over time and circumstances.

Strengths and Limitations
The strengths of this study include that it offers an increased
understanding of the unique nuances of everyday life when
caring for a child with PWS. Four mothers gave rich
descriptions over the course of a year about their experience of care with PWS. There are several limitations in this
study which could be addressed in future research.
Concerted efforts to increase the diversity of participants
with regards to ethnicity, SES, educational level, and the
gender and age of children with PWS could extend our
understanding of mothers’ experiences and contributing
factors. Future studies could also include the experience of
male caregivers and siblings. Notwithstanding limitations
in some areas of data representation, results from participants across interviews were consistent and alternative
responses were included in the data.

10

Global Qualitative Nursing Research

Conclusion
This inquiry into the experiences of mothers caring for children with PWS reveals previously unknown stories of the
complexities and nuances of specific care practices. Mothers
in this study were unable to satiate their children’s hunger
and monitored and restricted their children’s food intake to
keep them healthy. These (extra)ordinary care practices were
challenging, socially isolating, and difficult to maintain; a
situation made more difficult for mothers and families
because of the lack of adequate support and understanding.
There is a need to engage families in co-designing a response
to care that includes approaches and strategies that work for
them. Too often, systems and structures hold mothers and
families responsible for meeting unrealistic care needs.
There is also a need to reconceptualize mothering norms and
caring practices. This includes making room for difference
and diversity within the social and theoretical landscapes
while supporting families. The expansive understandings of
everyday care practices in this study offer insight into how to
better support parents and their children with PWS to function and participate in everyday life.
Acknowledgments
We would like to acknowledge the parents who participated in this
narrative inquiry.

Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect
to the research, authorship, and/or publication of this article.

Funding
The authors disclosed receipt of the following financial support for
the research, authorship, and/or publication of this article: This
study was supported in part by Mount Royal University, Faculty of
Health, Community and Education Innovation Fund.

ORCID iD
Genevieve Currie

https://orcid.org/0000-0001-9478-0850

References
Allen, K. (2011). Managing Prader–Willi syndrome in families:
An embodied exploration. Social Science & Medicine, 72(4),
460–468. https://doi.org/10.1016/j.socscimed.2010.11.032
Armenia, A. (2018). Caring as work: Research and theory. In B.
Risman, C. Froyum, & W. Scarborough (Eds.), Handbook of
the sociology of gender (pp. 469–478). Springer.
Bach, M. (2017). Changing perspectives on intellectual and developmental disabilities. In M. Wehmeyer, I. Brown, I. M. Percy,
K. Shogren, & W. Fung (Eds.), A comprehensive guide to intellectual and developmental disabilities (2nd ed., pp. 35–45).
Brookes Publishing Co.
Baker, E. K., Godler, D. E., Bui, M., Hickerton, C., Rogers, C., Field,
M., Amor, D. J., & Bretherton, L. (2018). Exploring autism
symptoms in an Australian cohort of patients with Prader-Willi

and Angelman syndromes. Journal of Neurodevelopmental
Disorders, 10(1), 1–8. https://doi.org/10.1186/s11689-0189242-0
Bedard, K. E., Griffith, A. K., Strittman, M. E., & Eaton, A.
(2023). Behavioral services for individuals with Prader–Willi
Syndrome: An initial examination of experiences, needs, and
wants of caregivers. Behavioral Interventions, 38(3), 739–749.
https://doi.org/10.1002/bin.1957
Blum, L. M. (2007). Mother-blame in the Prozac nation: Raising
kids with invisible disabilities. Gender & Society, 21(2), 202–
226. https://doi.org/10.1177/0891243206298178
Bradshaw, S., Bem, D., Shaw, K., Taylor, B., Chiswell, C., Salama,
M., Bassett, E., Kaur, G., & Cummins, C. (2019). Improving
health, wellbeing and parenting skills in parents of children
with special health care needs and medical complexity - A
scoping review. BMC Pediatrics, 19(1), 301–311. https://doi.
org/10.1186/s12887-019-1648-7
Brant, J. (2014). From historical memories to contemporary
visions: Honouring Indigenous maternal histories. Journal of
the Motherhood Initiative, 5(1), 35–52.
Brehaut, J. C., Guèvremont, A., Arim, R. G., Garner, R. E., Miller,
A. R., McGrail, K. M., Brownell, M., Lach, L. M., Rosenbaum,
P. L., Kohen, D. E., & Kohen, D. E. (2019). Changes in caregiver health in the years surrounding the birth of a child with
health problems: Administrative data from British Columbia.
Medical Care, 57(5), 369–376. https://doi.org/10.1097/
MLR.0000000000001098
Brock, S., Duran, M., Badia, V., Paramita, A., & Cho, R. (2015).
The experiences of mothers with children with disabilities. Afin
Disability Press, 68, 1–12.
Butler, M. G., Miller, J. L., & Forster, J. L. (2019). Prader-Willi syndrome - Clinical genetics, diagnosis and treatment approaches:
An update. Current Pediatric Reviews, 15(4), 207–244. https://
doi.org/10.2174/1573396315666190716120925
Butler, M. G., & Thompson, T. (2000). Prader-Willi syndrome:
Clinical and genetic findings. Endocrinologist, 10(4 Suppl 1),
3S–16S. https://doi.org/10.1097/00019616-200010041-00002
Čagalj, D., Buljevac, M., & Leutar, Z. (2018). Being a mother of
a child with Prader-Willi syndrome: Experiences of accessing
and using formal support in Croatia. Scandinavian Journal of
Disability Research, 20(1), 228–237. https://doi.org/10.16993/
sjdr.13
Caine, V., Estefan, A., & Clandinin, D. J. (2019). Narrative inquiry:
Foundation entries. In P. Atkinson, S. Delamont, A. Cernat, J.
W. Sakshaug, & R. A. Williams (Eds.), Sage research methods
foundations (pp. 1–23). Sage.
Cassidy, S. B., Schwartz, S., Miller, J. L., & Driscoll, D. J. (2012).
Prader-Willi syndrome. Genetics in Medicine, 14(1), 10–26.
https://doi.org/10.1038/gim.0b013e31822bead0
Chaij, C., Han, M., & Graziano, L. (2014). Latino families with a
child with Prader–Willi syndrome: Exploring needs for support.
Journal of Social Work in Disability & Rehabilitation, 13(3),
207–225. https://doi.org/10.1080/1536710x.2014.912184
Clandinin, D. J. (2013). Engaging in narrative inquiry. Left Coast
Press.
Clandinin, D. J., Caine, V., Estefan, A., Huber, J., Murphy, M. S.,
& Steeves, P. (2015). Places of practice: Learning to think narratively. Narrative Works, 5, 22–39. https://id.erudit.org/iderudit/nw5_1art02

Currie et al.
Clandinin, D. J., & Connelly, F. M. (2000). Narrative inquiry:
Experience and story in qualitative research. Jossey-Bass.
Clandinin, D. J., & Rosiek, J. (2007). Mapping a landscape of narrative inquiry: Borderland spaces and tensions. In D. J. Clandinin
(Ed.), Handbook of narrative inquiry. Mapping a methodology
(pp. 35–75). Sage.
Connelly, F. M., & Clandinin, D. J. (1999). Shaping a professional
identity: Stories of educational practice. Teachers College Press.
Creswell, J. W. (Ed.). (2013). Qualitative inquiry and research
design: Choosing among five approaches (3rd ed.). Sage.
Currie, G., Estefan, A., & Caine, V. (2024). Mothering a child with
complexity and rarity: A narrative inquiry exploring PraderWilli syndrome. Qualitative Health Research. Advance online
publication. https://doi.org/10.1177/10497323231225412
Dewey, J. (1925). Experience and nature. Kessinger.
Dewey, J. (1933). How we think. Prometheus Books.
Dewey, J. (1938). Experience and education. Simon & Schuster.
Douglas, P., Ryan, S., Runswick-Cole, K., & Fogg, P. (2021). Mad
mothering: Learning from the intersections of madness, mothering and disability. Journal of Literary & Cultural Disability
Studies, 15(1), 39–56. https://doi.org/10.3828/jlcds.2021.3
Driscoll, D. J., Miller, J. L., Schwartz, S., & Cassidy, S. B. (2017).
Prader-Willi syndrome. In M. P. Adam, H. H. Ardinger, R. A.
Pagon, S. E. Wallace, L. Bean, K. Stephens, & A. Amemiya
(Eds.), Gene reviews® (pp. 1–52). University of Washington.
http://www.ncbi.nlm.nih.gov/books/NBK1330/
England, P. (2005). Emerging theories of care work. Annual
Review of Sociology, 31, 381–399. https://www.jstor.org/stable/29737725
Ennis, L. R. (2014). Intensive mothering: The cultural contradictions of modern motherhood. Demeter Press.
Estefan, A., Moules, N. J., & Laing, C. M. (2019). Composing
sexuality in the midst of adolescent cancer. Journal of
Pediatric Oncology Nursing, 36(3), 191–206. https://doi.
org/10.1177/1043454219836961
Fayed, N., Gardecki, M., & Cohen, E. (2018). Partnering with
families of children with medical complexity to evaluate interventions. Canadian Medical Association Journal, 190(Suppl),
S24–S25. https://doi.org/10.1503/cmaj.180372
Fierheller, D. (2022). “Good” mothers, “risky” mothers, and
children’s health. Journal of the Motherhood Initiative for
Research and Community Involvement, 13(1), 1–15.
Filipe, A. M., Bogossian, A., Zulla, R., Nicholas, D., & Lach, L. M.
(2021). Developing a Canadian framework for social determinants of health and well-being among children with neurodisabilities and their families: An ecosocial perspective. Disability
and Rehabilitation, 43(26), 3856–3867. https://doi.org/10.108
0/09638288.2020.1754926
Friedman, M. (2015). Mother blame, fat shame, and moral panic:
“Obesity” and child welfare. Fat Studies, 4(1), 14–27. https://
doi.org/10.1080/21604851.2014.927209
Friedman, M., Kostka Lichtfuss, K., Martignetti, L., & Gingras, J.
(2021). “It feels a bit like drowning”: Expectations and experiences of motherhood during COVID-19. Atlantis: Critical
Studies in Gender, Culture & Social Justice, 42(1), 47–57.
https://doi.org/10.7202/1082015
Gardiner, E., Miller, A. R., & Lach, L. M. (2018). Family impact
of childhood neurodevelopmental disability: Considering
adaptive and maladaptive behaviour. Journal of Intellectual

11
Disability Research, 62(10), 888–899. https://doi.org/10.1111/
jir.12547
Georgiades, S., & Kasari, C. (2018). Reframing optimal outcomes
in autism. JAMA Pediatrics, 172(8), 716–717. https://doi.
org/10.1001/jamapediatrics.2018.1016
Green, F. J. (2015). Re-conceptualising motherhood: Reaching
back to move forward. Journal of Family Studies, 21(3), 196–
207. https://doi.org/10.1080/13229400.2015.1086666
Heymsfield, S. B., Avena, N. M., Baier, L., Brantley, P., Bray,
G. A., Burnett, L. C., Butler, M. G., Driscoll, D. J., Egli, D.,
Elmquist, J., Forster, J. L., Goldstone, A. P., Gourash, L. M.,
Greenway, F. L., Han, J. C., Kane, J. G., Leibel, R. L., Loos,
R. J., Scheimann, A. O., . . . Zinn, A. R. (2014). Hyperphagia:
Current concepts and future directions proceedings of the 2nd
international conference on hyperphagia. Obesity, 22(0 1), S1–
S17. https://doi.org/10.1002/oby.20646
Huang, S., Li, X., & Dong, D. (2023). Negotiating work and care
in Chinese families of children with autism: Reframing mothers’ narratives through a social-relational lens. Disability &
Society. Advance online publication. https://doi.org/10.1080/0
9687599.2023.2227330
Kayadjanian, N., Schwartz, L., Farrar, E., Comtois, K. A., &
Strong, T. V. (2018). High levels of caregiver burden in
Prader-Willi syndrome. PLos One, 13(3), e0194655. https://
doi.org/10.1371/journal.pone.0194655
Kittay, E. F. (2011). The ethics of care, dependence, and disability. Ratio Juris, 24(1), 49–58. https://doi.org/10.1111/j.14679337.2010.00473.x
Knight, K. (2013). The changing face of the ‘good mother’: Trends
in research into families with a child with intellectual disability, and some concerns. Disability & Society, 28(5), 660–673.
https://doi.org/10.1080/09687599.2012.732540
Lessard, S., Caine, V., & Clandinin, D. J. (2015). A narrative
inquiry into familial and school curriculum making: Attending
to multiple worlds of Aboriginal youth and families. Journal of
Youth Studies, 18(2), 197–214. https://doi.org/10.1080/136762
61.2014.944121
Maher, J., Fraser, S., & Lindsay, J. (2010). Between provisioning and consuming? Children, mothers and ‘childhood obesity’. Health Sociology Review, 19(3), 304–316. https://doi.
org/10.5172/hesr.2010.19.3.304
Mazaheri, M. M., Rae-Seebach, R. D., Preston, H. E., Schmidt,
M., Kountz-Edwards, S., Field, N., Cassidy, S., & Packman,
W. (2013). The impact of Prader-Willi syndrome on the family’s quality of life and caregiving, and the unaffected sibling’s
psychosocial adjustment. Journal of Intellectual Disability
Research, 57(9), 861–873. https://doi.org/10.1111/j.13652788.2012.01634.x
Miller, J. L., Lynn, C. H., Driscoll, D. C., Goldstone, A. P., Gold,
J. A., Kimonis, V., Dykens, E., Butler, M. G., Shuster, J. J., &
Driscoll, D. J. (2011). Nutritional phases in Prader-Willi syndrome. American Journal of Medical Genetics Part A, 155A(5),
1040–1049. https://doi.org/10.1002/ajmg.a.33951
Neysmith, S. M., & Reitsma-Street, M. (2005). Provisioning:
Conceptualizing the work of women for 21st century social
policy. Women's Studies International Forum, 28(5), 381–391.
https://doi.org/10.1016/j.wsif.2005.06.001
Nishida, A. (2022). Just care: Messy entanglements of disability,
dependency, and desire. Temple University Press.

12
O’Reilly, A. (2016). Matricentric feminism. Demeter Press.
Page, B. F., Hinton, L., Harrop, E., & Vincent, C. (2020). The challenges of caring for children who require complex medical care
at home: ‘The go between for everyone is the parent and as the
parent that’s an awful lot of responsibility. Health Expectations,
23(5), 1144–1154. https://doi.org/10.1111/hex.13092
Piepzna-Samarasinha, L. L. (2018). Care work: Dreaming disability justice. Arsenal Pulp Press.
Pozniak, K., Buchanan, F., Cross, A., Crowson, J., Galuppi,
B., Grahovac, D., Gorter, J. W., Hlyva, O., Ketelaar, M., de
Camargo, O. K., Mesic, M. K., Martens, R., McCauley, D.,
Nguyen, L., Palisano, R. J., Phoenix, M., Putterman, C.,
Rosenbaum, P., Sprung, J., . . . Wright, M. (2021). Building a
culture of engagement at a research centre for childhood disability. Research Involvement and Engagement, 7(1), 1–15.
https://doi.org/10.1186/s40900-021-00319-5
Reilly, C., Murtagh, L., & Senior, J. (2015). The impact on the
family of four neurogenetic syndromes: A comparative study
of parental views. Journal of Genetic Counseling, 24(5), 851–
861. https://doi.org/10.1007/s10897-015-9820-1
Rich, A. (1976). Of woman born: Motherhood as experience and
institution. Norton.
Rorty, R. (1999). Philosophy and social hope. Penguin Books.
Rosenbaum, P. (2009). Putting child development back into
developmental disabilities. Developmental Medicine and
Child Neurology, 51(4), 251. https://doi.org/10.1111/j.14698749.2009.03275.x
Rosenbaum, P., & Gorter, J. W. (2012). The ‘F-words’ in childhood disability: I swear this is how we should think! Child
Care Health and Development, 38(4), 457–463. https://doi.
org/10.1111/j.1365-2214.2011.01338.x
Rosenbaum, P. L., & Novak-Pavlic, M. (2021). Parenting a child
with a neurodevelopmental disorder. Current Developmental
Disorders Reports, 8, 212–218. https://doi.org/10.1007/
s40474-021-00240-2
Ruddick, S. (1989). Maternal thinking: Toward a politics of peace.
Beacon Press.
Runswick-Cole, K., & Ryan, S. (2019). Liminal still? Unmothering
disabled children. Disability & Society, 34(7-8), 1125–1139.
https://doi.org/10.1080/09687599.2019.1602509
Ryan, S., & Runswick‐Cole, K. (2008). Repositioning mothers:
Mothers, disabled children and disability studies. Disability
& Society, 23(3), 199–210. https://doi.org/10.1080/096875
90801953937
Schwartz, L., Caixàs, A., Dimitropoulos, A., Dykens, E., Duis, J.,
Einfeld, S., Gallagher, L., Holland, A., Rice, L., Roof, E., Salehi,
P., Strong, T., Taylor, B., & Woodcock, K. (2021). Behavioral
features in Prader-Willi syndrome (PWS): Consensus paper

Global Qualitative Nursing Research
from the International PWS Clinical Trial Consortium. Journal
of Neurodevelopmental Disorders, 13(1), 25–13. https://doi.
org/10.1186/s11689-021-09373-2
Singh, D. (2022). The neurobiology of Prader Willi syndrome. In
D. Singh (Ed.), Neuro-behavioral manifestations of PraderWilli syndrome (pp. 154–170). Cambridge University Press.
Smits, D. W., van Meeteren, K., Klem, M., Alsem, M., & Ketelaar,
M. (2020). Designing a tool to support patient and public
involvement in research projects: The involvement matrix.
Research Involvement and Engagement, 6(1), 30–37. https://
doi.org/10.1186/s40900-020-00188-4
Sousa, A. C. (2011). From refrigerator mothers to Warrior-heroes:
The cultural identity transformation of mothers raising children with intellectual disabilities. Symbolic Interaction, 34,
220–243. https://doi.org/10.1525/si.2011.34.2.220
Sprague, J., & Hayes, J. (2000). Self-determination and empowerment: A feminist standpoint analysis of talk about disability.
American Journal of Community Psychology, 28(5), 671–695.
https://doi.org/10.1023/A:1005197704441
Tabatabai, A. (2020). Mother of a person: Neoliberalism and narratives of parenting children with disabilities. Disability &
Society, 35(1), 111–131. https://doi.org/10.1080/09687599.20
19.1621739
Tan, Q., Orsso, C. E., Deehan, E. C., Triador, L., Field, C. J.,
Tun, H. M., Han, J. C., Müller, T. D., & Haqq, A. M. (2020).
Current and emerging therapies for managing hyperphagia and
obesity in Prader-Willi syndrome: A narrative review. Obesity
Reviews, 21(5), 1–18. https://doi.org/10.1111/obr.12992
Thomas, G. M. (2021). Dis-mantling stigma: Parenting disabled children in an age of ‘neoliberal-ableism’. Sociological Review, 69(2), 451–467. https://doi.org/10.1177/003802
6120963481
Woodgate, R. L., Edwards, M., Ripat, J. D., Borton, B., & Rempel,
G. (2015). Intense parenting: A qualitative study detailing the
experiences of parenting children with complex care needs.
BMC Pediatrics, 15(1), 197. https://doi.org/10.1186/s12887015-0514-5

Author Biographies
Genevieve Currie, RN, PhD is an associate professor at Mount
Royal University, School of Nursing and Midwifery in Calgary,
Alberta, Canada
Andrew Estefan, RN, PhD is an associate professor at the University
of Calgary, Faculty of Nursing in Calgary, Alberta, Canada
Vera Caine, RN, PhD is a professor at the University of Victoria,
School of Nursing in Victoria, British Columbia, Canada