‘It is up to me because I gave him this life’ How the awareness of being permanently and unconditionally responsible shapes the experience of chronic sorrow in parents of disabled children

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‘It is up to me because I gave him this life’
How the awareness of being permanently and
unconditionally responsible shapes the experience
of chronic sorrow in parents of disabled children
Edith Raap, Katie Lee Weille & Christine Dedding
To cite this article: Edith Raap, Katie Lee Weille & Christine Dedding (11 Aug 2024): ‘It is up to
me because I gave him this life’ How the awareness of being permanently and unconditionally
responsible shapes the experience of chronic sorrow in parents of disabled children,
Psychology & Health, DOI: 10.1080/08870446.2024.2378736
To link to this article: https://doi.org/10.1080/08870446.2024.2378736
© 2024 The Author(s). Published by Informa
UK Limited, trading as Taylor & Francis
Group
Published online: 11 Aug 2024.
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PSYCHOLOGY & HEALTH
‘It is up to me because I gave him this life’ How the
awareness of being permanently and unconditionally
responsible shapes the experience of chronic sorrow in
parents of disabled children
Edith Raapa , Katie Lee Weilleb,c and Christine Deddingd
aInstitute of Social Work, University of Applied Sciences Utrecht, Utrecht, The Netherlands; bWebster
University, Leiden, The Netherlands; cIndependent Practice, Amsterdam, The Netherlands; dAfdeling
Ethiek, Recht en Humaniora, Sectie Participatie, Amsterdam UMC (VUmc), Amsterdam, The Netherlands
ABSTRACT
Objective: The majority of parents with a disabled child experience
chronic sorrow, characterized by recurrent feelings of grief and loss
related to their child’s disability. There is a significant lack of research
on parents’ lived experiences of chronic sorrow, which limits our
ability to understand parents’ needs and provide proper support.
Design: Interpretative Phenomenological Analysis (IPA) was con-
ducted based on in-depth interviews with six parents of severely
disabled children.
Results: In the literature on chronic sorrow, an important aspect
has been consistently overlooked: the particular position of being a
parent, experiencing an awareness of being ultimately responsible
for their children. The analysis revealed how this awareness, experi-
enced as a deeply felt ethical commitment, unconditional, largely in
isolation, and without a limit in time, shaped the experience of
chronic sorrow. Because of this awareness, the parents experienced
themselves facing a Herculean task of navigating their intricate
emotions while struggling to maintain their ability to function.
Conclusions: By revealing the importance of considering the
unique parental position, the study enriches the concept of chronic
sorrow, simultaneously offering insights into what it means to be a
parent of a disabled child. These insights can improve care profes-
sionals’ responsiveness to parental needs.
Introduction
It is challenging to be a parent, but it is even more challenging to be a parent of a
disabled or chronically ill child. There is a higher risk of burnout (Lindström etal., 2011)
and divorce (Aydogan & Kizildag, 2017). The disability of their child affects many areas
of the parents’ lives, such as relationships with other family members, family dynamics,
leisure, and time for themselves (Bettle & Latimer, 2009; Bravo-Benítez etal., 2019). In
© 2024 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group
CONTACT Edith Raap edith.raap@hu.nl Institute of Social Work, University of Applied Sciences Utrecht,
Padualaan 101, 3584 CH Utrecht, The Netherlands.
This article has been corrected with minor changes. These changes do not impact the academic content of the article.
https://doi.org/10.1080/08870446.2024.2378736
This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License
(http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium,
provided the original work is properly cited, and is not altered, transformed, or built upon in any way. The terms on which this article
has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent.
ARTICLE HISTORY
Received 31 May 2023
Accepted 6 July 2024
KEYWORDS
Chronic sorrow;
parenthood; disability;
chronic illness; parental
experience; interpretative
phenomenological
analysis (IPA)

2 E. RAAP ETAL.
addition to the caregiving burden, parents also experience significant emotional labor
(Hochschild, 2012). Although parents of disabled children experience feelings of hope
and joy (Bravo-Benítez et al., 2019; Kearney & Griffin, 2001), feelings of loss can play
an important role (Fernańdez-Alcántara et al., 2016). The first one to recognize and
acknowledge that parents experience recurring feelings of grief and loss was Olshansky
(1962), a rehabilitation administrator. He based this on his observations of the psy-
chological and emotional reactions of parents of children with an intellectual disability
(Roos, 2018). Olshansky introduced the term ‘chronic sorrow’, arguing that chronic
sorrow is a natural, understandable, and non-pathological response in parents to an
abnormal situation. Further research showed that chronic sorrow has a permanent,
pervasive, and cyclical character and is potentially progressive. The essence of chronic
sorrow is the confrontation between current and desired reality- a discrepancy from
personal, developmental, and social norms. Although parents may come to terms
with the illness or the disability of their child, they may still experience sorrow in
periodic cycles that can be triggered by new events, such as developmental milestones
observed in other children (Eakes, 1995; Eakes etal., 1998; Roos, 2018). Parents mourn
the impact of the disability on their child’s life, their own life as parents, and the
well-being of their family. Starting with Olshansky’s insights into chronic sorrow in
parents of children with an intellectual disability, research followed on the experiences
of parents with children with various other disabilities, like epilepsy (Hobdell et al.,
2007), diabetes (Bowes et al., 2009), and so on. This research showed that, although
there may be differences in the degree, content, and extent of chronic sorrow, the
condition is common in parents regardless of the disease or disability of the child.
The experience of chronic sorrow often goes unnoticed (Doka, 2006; Green & Edwards,
2023), both in parents and professionals. This can result in unintended misunder-
standings in communication between parents and those around them, such as family,
friends, and professionals (Raap et al., 2024, under review). This aligns with the main
researcher’s experience in her post-graduate teaching practice on (the theory of )
parenthood to social workers and care practitioners. She observed in her work practice
that care professionals feel compassion and can relate to parents’ experiences of grief
when faced with their child’s diagnosis but operate under the assumption that this
grief finally fades and that the disability is eventually accepted; a time-bound per-
spective. They expect parents, after some time, to ‘accept’ their children’s disabilities.
The principal investigator noticed that this expectation sometimes led to judgment
and parent-blaming: professionals perceived the lack of ‘acceptance’ in parents to
cause either too high or too low expectations of their child. However, as the concept
of chronic sorrow demonstrates, parents are, in fact, chronically experiencing grief,
and closure of grief is not part of their emotional experience (Vitale & Falco, 2014).
Green and Edwards (2023) assert that for professionals to establish a ‘true partnership’
with parents of children with educational needs and disabilities, they must be familiar
with the theory of chronic sorrow. This understanding enables professionals to better
empathize with parents and provide support. Professionals can assist parents in gaining
a better understanding of the cause of their grief and better identify triggers for
chronic sorrow (Green & Edwards, 2023).
Starting with the inquiry into how to enhance support for parents with a disabled
child in the context of chronic sorrow, we posit that an in-depth understanding of

PSYCHOLOGY & HEALTH 3
parental experiences related to chronic sorrow is a fundamental prerequisite. However,
existing research on chronic sorrow is predominantly descriptive and lacks a focus
on the subjective lived experiences of parents facing chronic sorrow (Batchelor &
Duke, 2019; Coughlin & Sethares, 2017; Roos, 2018). Research focuses on manifesta-
tions of grief (Bravo-Benítez etal., 2019; Fernández-Ávalos etal., 2021; Hobdell, 2004;
Hobdell et al., 2007), the application of the chronic sorrow theory, the grief process
and characteristics of chronic sorrow (Ahlström, 2007; Fernańdez-Alcántara, 2016;
Fernández-Ávalos et al., 2021; Hewetson & Singh, 2009; Lowes & Lyne, 2000;
Northington, 2000), as well as implications for practice (Bowes et al., 2009; Glenn,
2015; Lowes & Lyne, 2000; Scornaienchi, 2003; Vitale & Falco, 2014). It explores encoun-
ters, triggers, and coping (Chang etal., 2018; Coughlin & Sethares, 2017; Eakes et al.,
1998; Fraley, 1986; Glenn, 2015; Nikfarid et al., 2017; Olwit, 2018; Whittingham et al.,
2013), support (Coughlin & Sethares, 2017; Eakes etal., 1998; Fernández-Ávalos etal.,
2021; Fraley, 1986; Glenn, 2015), and differences in chronic sorrow between fathers
and mothers (Coughlin & Sethares, 2017; Damrosch & Perry, 1989; Hobdell, 2004).
In their literature study on chronic sorrow, Coughlin and Sethares highlight this
gap and contend that parents should be seen more as subjects: ‘individuals with
unique experiences and methods of dealing with chronic sorrow’ (2017, p. 115).
However, there is a lack of studies on parents as subjects stretching beyond studies
of parents in chronic sorrow. Research predominates on parents as objects, as instru-
mental to their child’s well-being (Weille, 2011; Van der Pas, 2003). Most research
focuses on the developmental needs of children and positions parents as agents of
their children’s fulfillment, giving little insight into what it means to be a parent.
However, parents have their own psychological makeup and development (Stern,
2018), separate from their children. Van der Pas, a family therapist who immersed
herself into parents as subjects, designed a comprehensive theory on the psychology
of parents. She pointed to the vulnerability of being a parent, which is often not
fully understood by professionals working with parents. Her definition diverges from
the standard view of the parent-child relationship, especially the mother-child rela-
tionship, as a ‘natural’, loving relationship. She defined the parent not by their bio-
logical or genetic relationship but as a person with an awareness of being responsible
for their child. In doing so, she pinpoints the ethical core of being a parent. Feeling
ultimately responsible for a child implies vulnerability because a parent can never
fully live up to the existential, ethical mandate. Parents, especially of children with
complex needs, will experience inevitable failures. Since their child is a largely unknown
person and the parent is never in full control, the parental position implies that the
parent is ‘both at a loss and being accountable, both being helpless and in authority’
(Van der Pas, 2003, p. 420). Her definition distinguishes the position of being a parent
from the position of an array of child carers and educators who are also involved in
the child’s upbringing. While the latter are passers-by, the parent remains a parent
forever, even when not actively engaged in raising the child. Parenthood cannot be
discarded like a cloak; it constitutes an inherent aspect of an individual’s identity.
However, professionals often overlook the impact of parental identity. They perceive
parents solely as caregivers—as ‘objects’—rather than recognizing them as individuals
with their own psychological constitution, emotions, fears, and vulnerabilities—as
‘subjects’.

4 E. RAAP ETAL.
In this study, we used chronic sorrow as a lens to look at the experiences of par-
ents with a severely disabled child. We asked ourselves how parents’ lived experiences
of chronic sorrow could enhance both our understanding of this phenomenon and,
since chronic sorrow is an integral part of the experience of parents with a disabled
or chronically ill child, how such research could contribute to our comprehension of
what it means to be a parent of a disabled child.
Method
Design
We chose Interpretative Phenomenological Analysis (IPA) as a research method because
IPA provides an insider’s perspective of a phenomenon; with its inductive, open, and
process-minded approach, IPA gives the possibility of new insights (Smith etal., 2022).
This IPA study was the first part of a larger Participatory Action Research (PAR).
PAR aims to understand and improve practices with the people it concerns (Abma
et al., 2019). The PAR study aimed to gain insight into how healthcare professionals
can support parents with chronic sorrow. Believing that support tailored to what
parents need has as a prerequisite the thorough understanding of parents’ subjectivity,
we first aimed to get a deeper insight into the parents’ experiences by using IPA,
which is concerned with the detailed exploration of personal lived experience and has
a focus on participants’ meaning-making, characterizing phenomenological approaches
(Smith et al., 2022). To the subjective experiential focus, IPA adds an explicitly inter-
pretative layer. It is trying to make sense of the participants, who try to make sense
of what is happening to them; a so-called ‘double hermeneutic’ (Smith, 2007; Smith
etal., 2022). The reported study is an analysis of interviews with six parents of severely
disabled children from the first part of the broader research project.
The research started on the initiative of the head researcher. However, it was a result
of her contacts with care parents and care workers who had expressed affiliation with the
topic of chronic sorrow. At the start of the study, a research team was formed out of the
meaningful contacts of the head researcher with several parents with (severely) disabled
children, two of whom became members of the research team. Out of her profession, the
head researcher also had broad contacts with care professionals. Two of these care pro-
fessionals subsequently became part of the research team. The research group collaborated
throughout the entire study, consistently reflecting on the findings. They discussed how
these findings made sense and whether they aligned with or altered their perception of
chronic sorrow. These insights were iteratively brought into the research process. The work
was guided by PAR methodological principles and philosophy, emphasizing advocacy on
behalf of the co-researchers, while respecting them as knowledge creators [International
Collaboration for Participatory Health Research (ICPHR), 2013].
Procedure
In-depth face-to-face interviews were conducted by both the head researcher and a
parent co-researcher. The settings were chosen by the parents and were held either
at the homes of parents (n = 3) or in a more formal office setting (n = 3). The interviews

PSYCHOLOGY & HEALTH 5
lasted around 120 min. General, open-ended items were used to prompt participants
to reflect on their own stories (e.g. ‘What is it like to be the parent of your child
(with a disability)’? ‘Could you tell us about your insights and reflections when you
focus on the painful, sad, or difficult side of this experience?’). Further questions were
aimed at clarification, and, in line with the phenomenological aspect of IPA, were
specifically focused on what these experiences meant for parents and how they
interpreted them. Interviews were recorded and transcribed verbatim.
Data analysis
The analytic procedure followed Smith et al.’s (2022) multi-stage approach for IPA,
starting with several close readings and an associative drawing out of themes, and
proceeding further with a systematic, inductive thematic analysis of each participant’s
separate text, moving from emergent to higher-order themes. The approach was
repeated with the texts of all the participants concerning the themes that had
emerged. A ‘hermeneutic circle’ was employed that continually links part and whole,
striking a ‘balance between individuality and commonality’ (Nizza et al., 2021, p. 8).
The first author performed the data analysis under the supervision of an IPA expert
and discussed this with the research team, leading to further thematic refinement.
Quality of the research
In keeping with emerging standards for evaluating qualitative research in psychology,
Yardley’s (2000) four principles for assessing the quality were applied:
‘Sensitivity to context’ was established by the study’s choice of methods, its idiographic
commitment to understanding the experiences in the context of lives, ideas, and other
particularities, and grounding analytic claims in verbatim accounts as well as generalizing
only to the degree that befits an inductive study. ‘Commitment’ and ‘Rigor’ were ensured
by listening carefully during interviews, followed by very close readings of the partici-
pants’ material. The research group conducted regular in-depth discussions of the material
and emerging analysis. ‘Transparency and coherence’ were demonstrated both by in-depth
research team reflections as well as the detailed ‘trail’ of analytic stages, including suc-
cessive developments and re-working of superordinate themes. Reflexivity was brought
to bear on differing theoretical and epistemological perspectives that each research
team member brought to the research process. Added to this was a consideration of
Nizza et al.’s (2021) recent discussion of what constitutes a good IPA study.
Ethical considerations/ethics
The Medical Ethics Committee of Vu Medical Centre Amsterdam waived the need for
ethical approval (nr. 2020.481). The ethical principles for medical research involving
human subjects, as laid down in the Declaration of Helsinki and adopted by the
World Medical Association (2018), were followed as well as the Participatory Health
Research Ethical Principles and Practice (ICPHR, 2022). Rapport was facilitated because
the interviews were conducted by both the head researcher and a parent co-researcher.
This helped to constitute a non-hierarchical relationship between researchers and
parents. This is a key element in participatory research with a vulnerable population
(Thomson et al., 2019). The interviewers were ethically sensitive during the interviews

6 E. RAAP ETAL.
on the impact the interviews might have, giving parents space to recuperate and
asking for permission to persevere on some topics. The parents were contacted a
week after the interview to reflect on the impact of the interview and check the
need for support from a parent co-researcher or a parent counselor/therapist.
Participants
Purposive sampling was done by both parents and professionals of the research team. In
line with IPA, we strived for a homogenous sample. A homogeneous sample is guided by
the likelihood that the differences between participants are ‘more likely to be accounted
for by individual characteristics than by, for example, demographic characteristics’ (Smith
& Nizza, 2022, p. 14). Inclusion criteria were: being a parent of a child, (1) being eight
years or older, and (2) having a severe disability/ies. Age was chosen to gain insight into
the dynamics of the parents’ experiences of chronic sorrow over time (and not only after
diagnosis). The researcher(s) first familiarized with the parents and gathered demographic
information. The parents were provided with verbal and written information regarding the
aim and design of the study. They gave written informed consent. Their accounts were
pseudonymized. Six parents were interviewed: five mothers and one father. All parents
were white, Dutch-speaking, married, non-disabled, and had more than one child. All the
disabled children were boys. They were severely mentally disabled, except for one boy
who was severely physically disabled and had a chronic disease. Three parents took care
of their children at home at the time of the interview and three parents’ children (had)
lived in an institution. To get a view of chronic sorrow in retrospect, we interviewed one
parent whose child died ten years ago at the age of 19 (Table 1). Although this adds
another dimension to the sample, we sensed that the experiences of this mother were in
line with the other parents and, thus, in line with our attempt to select a sample with
sufficient homogeneity. We will address later how this decision played out in the analysis.
With the small numbers of respondents in IPA we neither aim nor claim to achieve gen-
eralization of the kind that may be achieved by larger sample sizes and other method-
ological approaches. Rather, we aimed to present a careful interpretative account that is
thought about in relation to extant literature and theory, generating insights, practice
suggestions, and questions for further study. IPA can yield insights or discoveries that
might be missed when using larger samples and/or more purely descriptive or less sub-
jectivist approaches (Spiers & Riley, 2019).
Table 1. Participants in the study.
Parent (pseudonym)
Gender assigned at birth/age/diagnosis of child/at home
or in residential care
Partnership
status
Ada, 41, University Lector Son, 8, intellectually and developmentally disabled,
autistic. At home.
Married
Bea, 47, Primary school teacher Son, 12, intellectually disabled, autistic. At home. Married
Victor, 72, Retired psychotherapist Son, 26, intellectually and developmentally disabled,
autistic. In residential care.
Married
Daphne, 45, Swimming pool assistant,
reghter.
Son, 16, physically disabled, a severe chronic illness. At
home.
Married
Esther, 52, Leatherworker, professional
client condant.
Son, 19, (died in 2011), intellectually and developmentally
disabled, chronic illness, autistic.
Married
Zoë, 52, Former hairdresser,
administrative assistant car company.
Son, 18, intellectually and developmentally disabled,
autistic. In residential care.
Married

PSYCHOLOGY & HEALTH 7
Findings
The parents in the study showed a great willingness to share and to talk extensively about
their experiences. The parental narratives covered numerous domains. Four interrelated
overall themes were identified through the analysis (Figure 1). The parents expressed the
psychological impact of losses in various aspects of their lives, causing feelings of desper-
ation, isolation, alienation, shame, and guilt (This theme is named ‘The emotional life and
self-image in parents’). They articulated pain associated with the confrontation of both
their child and themselves as ‘different’ (This theme is named: ‘Being different in society’).
The parents expressed experiences of encounters with professional support, which some-
times elicited pain and feelings of loss (This theme is named ‘Receiving care from profes-
sionals and institutions’). These themes will be explored in future articles.
In this article, we decided to focus on a single theme: ‘Becoming and being permanently
responsible’ (shown in the middle, at the top of Figure 1), which explores parents’ strong
and central sense of becoming and being permanently responsible for their children. This
theme has two subthemes: (1) ‘This seems to be my destiny’, emphasizing the layers of
the awareness of being responsible as parents, and (2) ‘This colossal thing stands in our
life, and how do we get past it’: emphasizing the need to function. This theme, with its
subthemes (Table 2), sheds light on how parents navigate parenthood while experiencing
this awareness of being responsible. In exploring only one theme, we aimed to do justice
to an aspect of chronic sorrow that has thus far received insufficient attention, namely
how parents express what it means to be a parent in their experiences of chronic sorrow.
Figure 1. Superordinate themes.

8 E. RAAP ETAL.
‘This seems to be my destiny’: the experience of becoming and being
permanently responsible
In the stories parents told about their experiences raising their disabled child, we
were particularly struck by how the parents expressed their sense of being responsible
for their children and the ethical quality of this sense of responsibility. The ethical
character manifested itself in different ways, revealing different facets and character-
istics. We will explore the meaningful ways the parents expressed these and discuss
the relationship with the concept of chronic sorrow.
‘Having a task’: parenthood as an obligation
The parents talked about the stress and burdens surrounding their daily lives, which
were fully structured around their child’s needs. They expressed a mixture of love,
Table 2. Superordinate theme and subthemes.
Superordinate theme Subthemes Subthemes
Participants
in subtheme
‘It is up to me because I
gave him this life’
‘This Seems to Be My Destiny’
The Experience of Becoming
and Being Permanently
Responsible
‘Having a task’: Parenthood as a
moral obligation
Ada
Bea
Esther
Zoë
‘This Is Really Your Own Thing’: The
Exclusive, Internalized, Unending
Dimension of the Sense of
Responsibility
Ada
Bea
Daphne
Victor
Esther
Zoë
‘After That I Never Had a Choice
Anymore’ An Obligation, Once
Made, Stretches Out into the
Future
Ada
Bea
Daphne
Esther
Victor
‘This Colossal Thing Stands in Our
Lives, and How Do We Get
Past It’ The Need to Function.
‘We Didn’t Have the Luxury to Give
Thought to Loss’. No Space for
Reection
Ada
Bea
Daphne
Victor
Esther
Zoë
‘Things Can Coexist’ Acknowledging
That Good and Bad Things Can
Go Together
Ada
Bea
Daphne
Esther
Victor
‘I Am Always Making Stories’.
Leaving Certain Episodes
Behind.
Ada
Bea
Daphne
‘It Is a Given’. Life is Perceived as
Meaningful
Bea
Daphne
Victor
Esther

PSYCHOLOGY & HEALTH 9
pride, and sometimes humor when they spoke about their children and their parent-
hood, but what came strikingly across was a strong sense of duty that permeated
their words. The experience of parenting was expressed as an obligation. The parents
used words like ‘having a task’ (Bea, Esther), ‘a destiny’ (Ada), and ‘doing the right
thing’ (Zoë). During the first years of being a parent, Ada felt her life was something
she merely had to endure: ‘You have to keep your head down and a kind of well,
this seems to be my destiny’. Bea mentioned that bringing up her child felt like: ‘This
is just a task we’ve got, and I have to do it the best I can’. She added, ‘I stay…I have
to do that for him … but sometimes it feels to me or us as a, yes, eh…yes, an effort,
I think’.
Parenthood as a ‘mission’ had a counterpart; it helped the parents to be able to
survive the stresses of daily life. This was most clearly expressed by Esther: ‘I needed
to think that, otherwise, I would not have been able to survive it’. It felt necessary
to think: ‘He had not been born to us for nothing. […] I found it a beautiful notion
to consider he hasn’t come to us for no reason’. Besides helping survive daily stresses,
Esther expressed that her parenthood as a mission was a ‘beautiful thought’. It gave
meaning to her (family’s) life. Although she used double negatives to describe this
meaning- ‘not for nothing’ and ‘not for no reason’ - that could be interpreted as
casting doubt on the positivity of the situation, she nevertheless expressed a sense
of fate that she welcomed: ‘It was meant to be’. That Esther was most explicit about
what this mission meant to her might be related to the fact that her child passed
away ten years before the interview took place. She had been able to reflect on the
meaning of living with her child in retrospect more than the other parents, who were
still in the midst of childrearing.
‘This is really your own thing’: the exclusive, internalized, unending dimension of
the sense of responsibility
The parents’ narratives shed light on the various characteristics of the sense of respon-
sibility. The parents expressed it primarily as their own. They felt they could not leave
the responsibility to others. Ada said: ‘I have to do all this on my own’. For Bea, being
a parent meant the consequences of bringing her child up were solely hers: ‘That is
something I have to deal with myself’. Daphne experienced it as: ‘Really your own
thing’. This sense of being alone with responsibility could be accompanied by the
sense that, as Bea said: ‘Nobody will be interested’. It made Zoë reluctant to express
herself to others because she felt unsure whether she was permitted to do so: ‘It
feels a bit like: “oh, there she is again’”. (bored tone) […] That is something I fight
with: whether I am allowed to say,“ He is not easy”’. While Bea and Zoë hesitated to
share their feelings because they did not expect others to be interested in them, for
Daphne, this disinterest was a reality. The confrontation with others expecting her to
deal with and to be capable of dealing with the difficulties of her son herself made
her want to withdraw: ‘People in my surroundings do not want to see this. “You can
deal with this, can’t you?” […] And then I crawl back into my shell’.
The parents’ narratives indicated how profound and deeply internalized the sense
of responsibility felt. Some parents related the internalization to their upbringing. Bea
mentioned a general normative influence of her parents: ‘The way I got norms and
values’. Esther pointed out the influence of her father. When she ‘had to cry a lot

10 E. RAAP ETAL.
about the situation’, her father had said: ‘That is of no use to the boy. Just go for it,
do it for him’. She added: ‘Perhaps that was the origin of the task. […] Somewhere,
something happened that made me go through the fire for him’. It also became
apparent that the influence of parents could work oppositely. Victor used to feel
responsible for his mother’s unhappiness because she felt unfairly treated by his
father. For him, this translated to a sense of ‘what does it help, this lamenting? […]
Perhaps from then on, I dealt with everything to do with guilt like…away with it’.
Wanting to respond in a manner distinct from his mother made him decide to bear
the responsibility without complaining.
‘After that, I never had a choice anymore’: an obligation, once made, stretches
out into the future
Another aspect that emerged from the narratives and points to the ethical dimension
of the sense of being responsible had to do with the element of ‘choice’. The parents
conveyed that they felt they had made an ethical choice to fully commit themselves to
their children, though with varying degrees of awareness. After this ‘choice’, they expe-
rienced an overpowering lack of choice. They were confronted with parenthood, a con-
dition that could not be reversed, including the difficulties it entailed. For Esther, setting
her child into the world was a defining moment to make her responsible: ‘He hadn’t
asked to be here. I had set him into the world […] It is up to me because I gave him
this life’. Daphne’s child was born with a severe heart condition, and a few hours after
his birth, the parents were asked to decide on an extremely risky operation for their son,
which was needed to save his life. They decided on the operation. For Daphne, this
meant: ‘I only had a choice the first moment he was born—to choose for myself or us
both. After that, I never had a choice anymore, no matter how bad the circumstances were’.
For her, having made the choice for an operation, which was a choice for the
possibility of his survival, meant she could not experience her life as separated from
her son’s life anymore. After this decision, she felt unconditionally responsible. Daphne’s
awareness of having had a choice became even more clear when she talked about
what it would have meant if her son had been born in less favorable medical
circumstances:
When he had been born in Africa, then he would have been…then it would have been
nished, but then it would also have been a closed chapter. Then we could have gone on
and would have related to that. Then that would have been it. But we don’t have that in
The Netherlands. So, you have to go on.
Another decision would have resulted in her son’s death, although she kept herself
from explicitly saying so by not finishing her sentence. She continued: ‘Well, in the
end, it brings you a lot of good things’. She took on the responsibility without expect-
ing good things, however. The aspect that once taken on the responsibility could not
be escaped is often missed by bystanders who, for example, comment on how the
parents’ children ‘enrich’ the parents’ lives. On this, Victor reacted: ‘Piss off! We have
had so many worries’. Daphne received compliments for her care for her son. She
said: ‘You get ‘deep respect’ and so on. […] And then I think: yes, well, I just have to
live! And we want the best life we can get, don’t we?’

PSYCHOLOGY & HEALTH 11
Once taken on, the responsibility stretched out into the future, the weight of which
was strongly felt by the parents. In the lives of children with a disability, many uncer-
tainties center around their development, medical condition, financial topics, and
related issues. The idea of dealing with an unknown and threatening future caused
panic and dread to the parents. When Ada’s son finally got a diagnosis, she said:
‘That was the next challenge. […] Shit…we had no idea what the future would be
like with a handicapped child’. When Esther pondered the future, she said: ‘The real
worries came: Jesus, how is this supposed to go?’ For Bea, it was not the uncertainty,
but the certainty that their situation would continue to go in a repetitive, meaningless
way: ‘There is no perspective. […] A kind of never-ending story’. She pictured the
future of her child and compared that to other parents’ experiences: ‘When there is
someone who says: ‘Hurrah, the nappy is gone’, then I think: well, the coming years
we will still be changing nappies…’. Ada felt ‘horror’ at the idea that her situation
would stay the way it was because she could barely handle her son at that point: ‘If
this is how it is going to be, and he stays in this phase, well, at that time that thought
was horrible’. Victor was overtaken by feelings of helplessness because: ‘You don’t
know when it stops’. He recalled a story of a father who killed his children and then
committed suicide. ‘I cannot really relate to that you actually do it, but I understand
that children evoke these feelings in their father: ‘and now it has to stop. I cannot
stand this anymore’. That you want peace’.
For the parents, parenthood meant assuming responsibility without complaint. What
was identified through analysis from their narratives was that they experienced an
ethical sense of responsibility for their child that was described as inescapable, largely
in isolation, as unconditional, deeply felt, with an all-or-nothing quality, and without a
limit in time. The inescapability stemming from the sense of unconditionality and
timelessness arguably shapes the experience of chronic sorrow, intensifying and com-
plicating it. For example, thinking about their child’s future caused panic and dread in
parents, the inescapability meaningfully expressed by Bea as a ‘never-ending story’.
The next section will discuss how the parents while experiencing this strong sense of
being responsible, processed their feelings of overwhelm and intense and continued to cope.
‘This colossal thing stands in our life, and how do we get past it’: the need to
function
After having explored the ways parents reflect on what it means to be(come) a parent
of a disabled child, experiencing chronic sorrow, we now delve into how the parents
made sense of their experiences to keep on functioning. We observed the parents
navigating through various emotional stages.
‘We didn’t have the luxury to give thought to loss’: no space for reection
The parents found their lives overwhelming and expressed it using strong language.
Ada called it ‘hell’. Daphne experienced the moment of her son’s diagnosis as ‘being
hit with a sledgehammer’. Zoë went beyond her limits. She fell asleep from exhaustion
while standing: ‘‘‘Mam; you forgot to lay down”. “What? Where am I?” […] You’re knocked
out straight away’. The intensity of their daily lives, both physically and emotionally,

12 E. RAAP ETAL.
beat the parents down, and they felt a complete lack of space to reflect on their
experiences. Reflection seemed to stand in the way of coping, especially in the early
stages of parenthood. As Victor said: ‘We didn’t have the luxury to give thought to loss’.
Victor’s son was born with severe medical problems: ‘It was so hectic, simply surviving,
first him and later all of us’. Bea also needed all her energy to hold out: ‘In the begin-
ning, in the period when he was so different, I was mainly busy trying to survive’. The
parents avoided thought, memory, and emotion. Contemplating reality posed a threat
to their psychological equilibrium, which was necessary to remain functioning. Zoë felt:
‘That is not possible now; I have to be strong…’. Where reflecting was hard, speaking
openly about the situation was even more difficult. Ada recounted: ‘I think that both
D. (partner) and I for two years didn’t want to speak out to each other about how
terrible it was. […] Because then, yes, we were afraid everything would fall apart’.
To survive the pressure, some parents in the study entered a state of emotional
numbing. Ada ‘flattened a bit’. She was: ‘Just plodding through’. Zoë was: ‘On a sort
of autopilot. It made me dim’. Pieces of her memory were missing: ‘All of a sudden,
I am fifty, you know. What did I do with all those years?’.
Accompanying numbness was shock. Daphne felt she was: ‘in an enormous state
of shock for some years, which I didn’t realize myself. I just kept on going’.
Numbness was also combined with active avoidance of emotions. Ada: ‘Didn’t feel deep
sadness’ […] I was not ready for it… […] I avoided that layer’. Daphne ‘deliberately put
on blinkers now and then’. Bea felt sad, but she ‘didn’t want to go there’. She dealt with
her feelings by ‘switching them off’, but she failed: ‘It is still there’. The need to continue
with their lives prevented the parents from acknowledging and expressing their emotions.
Another aspect prompting emotional restraint was that they felt it was inappropriate
to feel and talk negatively about (being the parent of) their child, either in their own
eyes or in the eyes of society. It caused Bea to suppress her feelings: ‘I do not allow
myself to feel this’. Ada felt it was socially unacceptable: ‘The things you do not say. In
social life. You do not say: I do not want my child’. She was even reluctant to talk about
her negative feelings to her partner: ‘It is also his child, and it should have been our
happiness, you know’. She seemed to feel she devalued both her partner as a parent
and their relationship when talking negatively about their son. Esther refrained from
speaking about her son to others out of loyalty. She felt that discussing the challenging
aspects of her life could cast a negative light on her child, and she worried that people
might question her son’s rightful place in society: ‘I felt I betrayed him then’.
The parents felt that reflecting on the negative and painful side of their lives was
antithetical to coping, and contradictory to their image of how a parent should be.
‘Things can coexist’: acknowledging that good and bad things can go together
Being a parent amplified the need to find strategies for maintaining functionality.
When the parents started to express feelings of ambivalence around their child, an
emotional shift occurred. Acknowledging the negative side of their parental experi-
ences was described by the parents as a healing process. Esther experienced it as ‘a
kind of turning point’ when, on the advice of her general practitioner, she told her
son she experienced her life with him as difficult: ‘That I spoke it out loud, for the
first time, to my own child!’. For Ada, the first meeting with a psychologist also served
as a ‘turning point’. ‘I dared to be honest there’. Affirming out loud: ‘Phew, this is hard’

PSYCHOLOGY & HEALTH 13
did not bring the disintegration she feared: ‘The world doesn’t fall apart, and you get
more self-confidence’. She experienced acknowledgment that contradictory feelings
could coexist as a step forward. She now believed:
You can say these things (about the life she didn’t truly desire, E.R.) and love your child
at the same time. So that did happen over time, that I acknowledged that things could
exist side by side. […] Well, I look upon it very much like playing cards […]. The playing
cards are just shit, but I love F. (her son).
Some parents were helped by the research interview itself. Bea remarked: ‘It has
done me good to hear myself say these things out loud. That you think: “O my
goodness, I do say this”’.
There was a need for parents to find a way to view their lives, their futures, and
the responsibility of parenthood as something that could be experienced as manage-
able. Both Ada and Daphne talked about how they wanted to get on with their lives.
Ada said: ‘This colossal thing is in our life, and how do we get past it’. Daphne men-
tioned the need to see things, ‘in perspective’. Victor pointed out: ‘It is not only misery.
We have had very intense and intimate moments with him’, although he added these
moments were ‘short’. There was a desire to integrate into the ‘normal world’, and
parents attempted to establish a sense of ordinariness in their lives. Daphne said: ‘You
need to have your place in the normal world and be aware that not everything revolves
around A. (her son)’. Esther said that, at times, people wondered why they had decided
to expand their family after having a disabled son. ‘For us, this was like, a normal thing.
Because it was normal, yes, there were problems, but it was also very good. We were
a perfect family together’. She added that it might even be because it was so challeng-
ing that she could be: ‘the happiest person in the world sometimes: probably because
other moments were considerably more difficult (laughs). So that is, things stood very
much opposite each other’. She experienced certain moments as more fulfilling and
even surpassing what is considered ‘normal life’.
‘I am always making stories’: leaving certain episodes behind
We have seen that the parents acknowledged ambivalence and tried to achieve a
sense of normalcy in their lives. Another way to manage their negative, sad, and
difficult feelings was to compartmentalize their lives into distinct phases. This allowed
them to finish a phase and move forward. Ada felt there was always a ‘mourning
edge’ accompanying her. She experienced this as a feature that she needed to find
a way to weave into her narrative. She was ‘always making stories’. By doing so, she
could ‘tie up’ certain episodes along with the associated pain. As Ada said: ‘You truly
want to be in still water, just being able to say: well, we don’t have that anymore.
Completely gone!’. Daphne used this strategy too: ‘Look one door down. Not to be
stuck in this and not knowing what to do’. Bea commented on the passing nature
of pain, which she welcomed: ‘It is funny that over time, you forget where it was
painful. That is something beautiful about being sad and having pain. You forget how
things were’. Like numbing and avoiding, deliberately placing specific episodes behind
them was a method to distance themselves from sadness and pain and take more
control over their lives, a way to deal with the experience of chronic sorrow.

14 E. RAAP ETAL.
‘It is a given’: life is perceived as meaningful
The parents expressed how they had grown as a person over time. Bea felt she
changed her focus away from herself and became more sensitive to things and people
in her surroundings that deviate from the norm: ‘It is also beautiful when things go
differently. When somebody is different’. Victor mentioned he saw things more in
perspective, in a kind of detached way, stressing the lack of meaning in life: ‘I think:
‘What is life?’ It is over before you know it. It is meaningless. It is a flash of light in
between two endless dark spaces’. Victor experienced his life as just a tiny speck in
the grander temporal scheme. Daphne’s words resembled Victor’s; she referred to the
grander spatial scheme, the globe: ‘You are just a tiny ant on this globe, so, you know,
it can go in all directions for you’. They both weaved a sense of forces beyond their
control into their words. Esther’s son died ten years ago. She had a more elaborate
account of meaningfulness in her retrospective, not living this in the present moment.
She stressed ‘how enriching it also has been’. The use of the word ‘also’ indicates that
while her son’s life had enriched her, it was not a solely one-sided experience. However,
she ‘started to believe increasingly that’ her son was ‘meant to be the way he was’.
For her, ‘It was a path I was meant to go’. ‘It is a given’. We observed parents shifting
from a lack of time for and avoidance of reflection, to gradually coming to terms
with the ambiguity of their feelings, resulting in a sense of a ‘new normal’. However,
this was experienced as a precarious balance that could not be readily controlled.
Discussion
The study set out to research the subjective experiences of chronic sorrow in parents
with a child with a severe disability by describing in detail the experiential contextualized
knowledge of six parents. It showed the complexity, disorientation, burden, and ambiv-
alence of being thrown into the position of being a parent of a severely disabled child.
The study revealed the centrality of parents’ awareness of being responsible and
the unique ethical and unconditional dimension of the parental relationship. The
findings indicated that the sense of being responsible has its own dynamics and
characteristics and was central in shaping the way parents experienced chronic sorrow,
coped with their emotions, and kept on functioning.
Since the particular position of being a parent was essential in our findings, we
will theorize the findings in relation to (1) literature on parenthood as an ongoing
ethical relationship, and (2) the concept of biographical disruption and reinforcement,
particularly addressing parental biographical reinforcement. Although this is literature
outside the direct scope of chronic sorrow, we selected it to illuminate the core of
our findings: how the particular position of being a parent shaped the parents’ expe-
riences. Considering extant literature aligns with the inductive nature of IPA (Smith
& Nizza, 2022). We will then reflect on how the study contributes to the existing
literature on chronic sorrow and discuss the implications for care practice.
Parenthood as an ethical relationship
How the parents in the study expressed their experience of being a parent aligns with van
der Pas’s definition of a parent as a person with an awareness of being responsible for their
child. From the narratives of the parents emerged the different characteristics of this

PSYCHOLOGY & HEALTH 15
awareness van der Pas talks about, e.g. the unconditionality (Esther: ‘It is up to me because
I gave him this life’), the ‘all-or-nothing’ quality (Ada: ‘it is a destiny’)-, and the ‘without a
limit in time’- quality (Bea: ‘A kind of never-ending story’). In van der Pas’ definition, par-
enthood is ‘ethical’ and not ‘natural’. Ethics are about choice (Weille, 2011). The aspect of a
motivated choice was also stressed by the anthropologist Hrdy (1999, 2009), who argues
that mothers, for most of human history, have needed to make a cold calculation of their
newborn’s survival chances and whether to invest in rearing it. Hrdy dissolves the myth
that mothers unconditionally commit to babies. In modern, technological societies, this
choice is collectively and medically rather than individually determined. However, it is nev-
ertheless present as a concept for many parents upon encountering pre- or postnatal
abnormalities. For one mother in the study, Daphne, this was a reality she explicitly
reflected upon.
Because a parent is never fully capable of living up to the existential, ethical man-
date, the ethical imperative of parenthood makes ambivalence a logical part of the
parental experience, which we recognize in the narratives of the parents in our study.
Parents strive to be good parents but experience internal struggles between their own
needs and longings and the overpowering needs of their children (Kraemer, 1996). As
Ada said, expressing negative emotions about her child made her feel guilty and dis-
loyal, ‘the things you don’t say’. There is a tradition of denying the complexity of the
parental experience and excluding difficult feelings like hate and anger from the parental
dimension of emotions (Kraemer, 1996; Parker, 1995). Society looks at the parent pri-
marily from the perspective of how the parent provides for the child’s needs (Weille,
2011). This not only causes professionals to neglect parental emotions and perspectives
but also causes parents to deny themselves their own subjectivity- as Bea said: ‘I did
not allow myself to feel this’. It makes it difficult to accept feelings of ambivalence.
However, recognizing and articulating frequently ambivalent emotions is important for
parents to attain greater control over their lives, as identified in our study.
The particular position of being a parent shaped the way the parents navigated
their emotions. We will discuss this in the next section.
Biographical disruption
Our study revealed how the parents navigated their parenthood. Their awareness of
being unconditionally responsible made their parenthood an overwhelming experience
(‘we were busy trying to survive’). Their sense of responsibility made it more urgent
for them to keep functioning. They could not distance themselves and take a break
from parenthood, feeling unconditionally committed. This added a layer of complexity
and gravity to their experiences. It made it more complex for them to confront emo-
tions and inner ambivalences since these threatened their fragile stability. An enormous
amount of emotional work, or what Bury called ‘biographical work’ (1982), was required
of parents. Bury conducted research on individuals with chronic illnesses and formu-
lated the concept of biographical disruption. The concept was refined in later years
but still endures as a core concept. Our study revealed biographical disruption, not
in the chronically ill but in their parents. Biographical disruption asks for narrative
reconstruction (Williams, 1984), a fundamental rethinking of biographical self-concept.
Several parents in the study spoke about the need for their own narrative (‘I am
always making stories’) to reconstruct their biography to get a sense of coherence

16 E. RAAP ETAL.
in their lives. According to Bury, chronically ill people deal with biographical disruption
by trying to normalize in the face of disruption, a dynamic also seen in our study.
In Wilson’s work on how HIV-infected mothers deal with biographical disruption,
the particular impact of being a parent becomes clear (Wilson, 2007). The mothers in
her study experienced biographical disruption, but their responsibilities and desire
to protect their children provided a reason for them to cling to their identity as
mothers. Wilson calls this ‘biographical reinforcement’. Understood in Van der Pas’
terms, the awareness of being responsible is an extra impetus for these mothers to
restore their biographical disruption. By this, Wilson points to the impact on the
maternal position. The impact of this particular position on the necessity of main-
taining resilience and perseverance also became evident in our study.
Chronic sorrow and the parental stance
In the former two sections, we tried to understand the findings of the study primarily
through the lens of a theory on parenthood and (parental) biographical disruption and
restoration. In this section, we set out to establish a link with the existing literature on
chronic sorrow and what we see as a gap in this body of work. Our study contributes to
the theory of chronic sorrow by shedding light on what it means to be a parent in the
experience of chronic sorrow. Therefore, we link the findings with what is known in the
existing literature regarding the specific influence of parenthood on chronic sorrow. In the
literature on chronic sorrow, although discussing parental emotions, very few studies pay
attention to what the position of being a parent means for how chronic sorrow is experi-
enced. In several studies, parents can be seen to articulate their position. For example, in
Northington’s (2000) study on chronic sorrow in parents of children with sickle-cell disease,
parents express the inescapability of the responsibility of parenthood and the need to keep
on functioning. In Glenn’s study (2015) on mothers with a child with Alagille syndrome too,
mothers expressed the unconditionality of their position. Nevertheless, these studies do not
conceptualize these expressions as stemming from a unique parental awareness of being
responsible. In this way, something is missed regarding what makes chronic sorrow a more
intense, more complex, and more ambivalent experience for parents. Several studies implicitly
suggest that the meaning of the experience of chronic sorrow is the same irrespective of
whether it concerns a parent, a professional caregiver, an aunt, or a sister. This becomes
apparent in the use of names for the respondents in studies: some studies use ‘parent’,
‘caretaker’, or ‘family member’ interchangeably (e.g. Yehene etal., 2021) or use general terms
like ‘caretakers’ (e.g. Olwit et al., 2018), ‘familial care’, or ‘family caregivers’ (e.g. Bravo-Benítez
et al., 2019). Similarly, Green and Edwards note that when they reference ‘parents’ in their
work, ‘parents’ can be interpreted as ‘a collective term for all those who care for and are
responsible for young people’ (2023, p. vii). However, by doing this, they fall short of rec-
ognizing a fundamental distinction between parents and caregivers. Interestingly, parents
themselves can feel offended when they are addressed with broad terms like ‘carer’ because
it does not seem to do justice to their experience (Thackeray & Eatough, 2016). We argue
that the aforementioned lack of differentiation in studies can result in missed opportunities
for a more nuanced understanding of chronic sorrow in parents. Our study revealed how
the parental position plays a part in the experience of chronic sorrow, and we believe that
further research in this area is needed to provide a more comprehensive understanding.

PSYCHOLOGY & HEALTH 17
Implications for care
Green and Edwards (2023) underline the necessity for professionals to comprehend chronic
sorrow to foster a true partnership with parents with a disabled child. We argue that rec-
ognizing and acknowledging the unique parental position can further assist professionals in
achieving genuine partnership. Given that the parental position involves both vulnerability
and the desire to be in charge, we recommend that practitioners adopt a dual ‘parent
guidance position’ (van der Pas, 2003). This means that the practitioner is aware of the
duality of the relationship. This duality asks to conceive of the parent in two ways: first, as
a partner who possesses expertise in their own child’s well-being and who requires parental
agency, and second, as an individual who grapples with the complexities, ambivalences,
and stresses of parenthood. On the one hand, the professional collaborates with the parent
as a fellow expert, supporting the parent’s consultative aims and acknowledging their aware-
ness of being responsible for their child. On the other hand, when the professional connects
with the parent as a vulnerable individual, the parent may need more emotional support.
This involves taking time to listen to explore their experiences while also recognizing and
acknowledging strong ambivalent emotions, guilt, and shame in parents. It means showing
respect for parents’ efforts and reassessing expectations regarding ‘acceptance’ of the disability
of their child. It involves creating a space for acknowledging parental grief and exploring
chronic sorrow together. Our study demonstrates that these strategies can be beneficial.
Limitations
In line with IPA, we set out to find a homogeneous sample of parents and asked ourselves
if the ways the parents varied from one another could be contained in the analysis of
the phenomenon. The study revealed that the experiences of Esther, the mother who
lost her child 10 years ago, were distinct, not being in the heat of bringing up her children
and thereby being in the position to look back more reflectively. Although it could be
argued that this is an instance of a characteristic turning out not as homogeneous as
intended, we believe that this unintended difference ultimately contributed perspectives
that were meaningful in the context of the analysis. It is inherent in IPA that only later
important contextual aspects of experiences can become apparent.
It could be useful to do more studies on the parental experience of chronic sorrow
with well-defined homogeneous samples - for example solely with parents of a child
who passed away or with parents who are disabled themselves or who come from
different ethnic backgrounds, to add to the knowledge of the phenomenon and to
give an increasingly nuanced differentiation of the contextual influences in parents.
In line with the inductive logic of IPA, very gradually more general claims can be
made, each founded in the detailed examination of separate studies.
Conclusion
This study’s insights into parents’ experiences of chronic sorrow offer directions for refining
the concept of chronic sorrow. It stresses the importance of addressing the specificity or
uniqueness of the parental position and the need to perceive the parent as a ‘special kind’
of caregiver in research on chronic sorrow. The insights can contribute to improving and
tailoring care practices to meet the unique needs of parents with a disabled child.

18 E. RAAP ETAL.
Acknowledgments
We are very thankful to the parents who shared their personal experiences with us. This study
is in memory of two children who passed away during the period of research. I want to express
my sincere gratitude to the research team members Minke Verdonk, Leontien Sauerwein, Yvonne
Kok, and Sofie van de Wetering.
Disclosure statement
No potential conict of interest was reported by the author(s).
Geolocation information
The Netherlands.
Funding
The author(s) reported there is no funding associated with the work featured in this article.
ORCID
Edith Raap http://orcid.org/0000-0002-3660-0564
Katie Lee Weille http://orcid.org/0009-0002-0736-7705
Christine Dedding http://orcid.org/0000-0003-3296-4245
Data availability statement
The data supporting this study’s ndings are available on request from the corresponding
author, Edith Raap. However, the data are not publicly available due to restrictions, such as their
containing information that could compromise the privacy of research participants.
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