Journal of Pediatric Nursing 37 (2017) 108–116

Contents lists available at ScienceDirect

Journal of Pediatric Nursing

Chronic Sorrow in Parents of Children with a Chronic Illness or Disability:

An Integrative Literature Review
Mary Beth Coughlin ⁎, Kristen A. Sethares
a
Laboure College, Milton, MA, United States
b
University of Massachusetts Dartmouth, United States

a r t i c l e i n f o

Article history:
Received 15 March 2017
Revised 17 May 2017
Accepted 19 June 2017

Keywords: Chronic sorrow Children Chronic illness Disability Parents

a b s t r a c t
Problem: This integrative review aims to synthesize the findings of studies on chronic sorrow in parents, to ana- lyze the findings along three specific research questions,
and to identify areas for future research.
Eligibility Criteria: Studies of parents, mothers and/or fathers of non-adult children published in peer-reviewed journals that answered the research questions: 1) How
does the experience of chronic sorrow differ between mothers and fathers? 2) What factors have been identified to impact the experience of chronic sorrow over
time? 3) What strategies by health care providers for helping parents cope with chronic sorrow have been iden- tified to be most and least helpful?
Sample: Nineteen studies from a literature search within the databases of CINAHL, MEDLINE, PsycINFO, Psycarticles and SocIndex were included in the review.
Results: Findings suggest that mothers experience more intense chronic sorrow compared with fathers. Health care crises and developmental milestones are potent
triggers for resurgence of chronic sorrow. Helpful strategies by healthcare providers include providing information, helping to procure respite and being empathetic
and compassionate.
Conclusions: Healthcare providers need to understand that chronic sorrow is a normal consequence of having a child with a chronic illness or disability.
Implications: Family-centered interventions should be individualized and aimed at providing increased comfort to parents in times of need. Further research that looks
at the effectiveness of interventions is needed.
© 2017 Elsevier Inc. All rights reserved.

The prevalence of chronic illness, including developmental and be- havioral problems in children, has continued to increase over the past
30 years (Van Cleave, Gortmaker, & Perrin, 2010). Parents are chal- lenged with the responsibility of managing their child's health problem alongside
the demands of everyday living. Studies have demonstrated that parents suffer a negative impact on their psychological and physical health as a result
of these demands (Cousino & Hazen, 2013; Kratz, Uding, Trahms, Villareale, & Kieckhefer, 2009; Raina et al., 2005). While studies often include
both parents, mothers have been more widely studied because they tend to be the primary caregivers.
Over the last several decades, the concept of chronic sorrow has emerged as a context within which caring for a child with a chronic ill- ness or
disability can be understood. Studies on chronic sorrow include parents of children with progressive neurodegenerative disease (Bettle

⁎ Corresponding author: Mary Beth Coughlin.

E-mail address: mcoughlin2@umassd.edu (M.B. Coughlin).
& Latimer, 2009), multiple births and special needs (Bolch, Davis, Umstad, & Fisher, 2012), type 1 diabetes (Bowes, Lowes, Warner, & Gregory,
2009), Down syndrome (Damrosch & Perry, 1989), prematuri- ty (Fraley, 1986), neural tube defects (Hobdell, 2004), epilepsy (Hobdell, et al.,
2007), congenital heart disease (Leon, Wallenberg & Holliker, 2013), cancer (Nikfarid, Rassouli, Borimnejad, & Alavimajd,
2015), sickle cell disease (Northington, 2000), and cerebral palsy (Whittingham, Wee, Sanders, & Boyd, 2013). Both qualitative and quan- titative
designs have been employed. The research to date reveals that parents caring for a chronically ill or disabled child experience chronic sorrow.

Background

Chronic sorrow is a concept that has been explored among care- givers of adults and parents of children with chronic illness or disability. First
conceptualized by Olshansky (1962) as a normal psychological re- sponse in parents with mentally disabled children, it wasn't until de- cades later
that researchers began to study the concept in other

http://dx.doi.org/10.1016/j.pedn.2017.06.011
0882-5963/© 2017 Elsevier Inc. All rights reserved.
M.B. Coughlin, K.A. Sethares / Journal of Pediatric Nursing 37 (2017) 108–116
109
populations. In 1991, the Nursing Consortium for Research on Chronic Sor- row (NCRCS) was formed to expand the study of chronic sorrow beyond a
primary focus on parents of children with disabilities to include indi- viduals with chronic illness and their caregivers (Burke, Hainsworth, Eakes, &
Lindgren, 1992; Eakes, Hainsworth, Lindgren, & Burke, 1991). Work by the consortium included refining the conceptual definition of chronic sorrow
to include characteristics of the experience as perma- nent, periodic and progressive and differentiating chronic sorrow from grief and depression
(Burke et al., 1992; Eakes, Burke, & Hainsworth,
1998).
Parents seek fulfillment in having children and watching them grow into responsible human beings. However, the joy of becoming a parent can be
quickly diminished by the profound realization that the child has a lifelong illness or disability. When parents become aware of the im- pact that
illness or disability will have on the child's potential to live a full and happy life, there is often a profound feeling of loss, resentment and a longing
for the desired child (Patrick-Ott & Ladd, 2010; Vitale & Falco, 2014; Young, 1977). Numerous studies have looked at this phe- nomenon within the
framework of chronic sorrow. Findings demon- strate that these feelings persist over time as the child grows and fails to meet expected
developmental milestones, as the child has periodic relapses of illness, repeated hospitalizations, or as medical demands in- crease (Bowes et al., 2009;
Gordon, 2009; Hewetson & Singh, 2009). The accumulation of research on chronic sorrow in parents over the last three decades, gives rise to a clinical
problem facing those caring for children and their families. A deeper understanding of the impact of chronic sorrow on parents can guide interventions
and provide a framework for family-centered care of children with a chronic illness or disability.

Purpose

The purpose of this integrative review is to synthesize the findings of studies on chronic sorrow in parents, to analyze the findings along three specific
research questions, and to identify areas for future research. An integrative review was chosen as the appropriate method to examine this topic
because it allows for analysis of diverse sources of data (Whittemore & Knafl, 2005). The research questions for this integrative review are: 1) How
does the experience of chronic sorrow differ be- tween mothers and fathers? 2) What factors have been identified to im- pact the experience of
chronic sorrow over time? 3) What strategies by health care providers for helping parents cope with chronic sorrow have been identified to be most
and least helpful?

Method

Data Sources and Screening

A search using the terms chronic sorrow and parents within the data- bases of CINAHL, MEDLINE, PsycINFO, Psycarticles and SocIndex was con- ducted
between the spring and fall of 2016. The initial search for articles in peer-reviewed journals revealed 71 results. After removing duplicates, the number of
records was 59. At that point, journal titles and abstracts were read for relevancy to this review. This brought the total number of articles down to 43.
The inclusion and exclusion criteria were then applied which led to a final sample of 19 articles for review (see Fig. 1).

Inclusion/Exclusion Criteria

Inclusion criteria were studies of parents, mothers and/or fathers of non-adult children with a chronic illness or disability, parent experience of
chronic sorrow, published after 1962 when the term chronic sorrow was first introduced, written in English, that employed a qualitative or quantitative
approach, were published in peer-reviewed journals and were able to answer any of the research questions. Exclusion criteria in- cluded studies of
parents of adult children with a chronic illness or dis- ability, of caregivers that were not parents, that included parents of
children with a terminal diagnosis or whose child had passed away, and unpublished studies. Ancestry searching of downloaded articles did not
yield any additional studies which contributed to the assess- ment that the search was exhaustive.

Data Analysis

Of the nineteen studies in the sample, four were quantitative, eleven were qualitative and four were mixed methods. Critical appraisal was
conducted for methodological rigor following the criteria described in Hawker, Payne, Kerr, Hardey, and Powell (2002). The studies were ap- praised
along nine measures: abstract and title, introduction and aims, method and data, sampling, data analysis, ethics and bias, results, trans-
ferability/generalizability, and implications/usefulness with each mea- sure having four options of either good (4), fair (3), poor (2) or very poor
(1). The rating of each measure was summed according to the pub- lished guidelines for a total score between 9 and 36 for each article (Hawker et
al., 2002). To increase the reliability of the appraisal, both authors appraised the articles separately for quality until there was
100% agreement supporting inter-rater reliability.
The scores for the sample in this review ranged from a low of nine- teen to a high of thirty-six out of a possible thirty-six. These raw scores were
then converted back to the qualitative description of either poor (scores below 20), fair (scores from 20 to 28) and good (scores above
28 to 36). None of the studies were rated at very poor (under 10). This conversion allowed for a more readily interpretable assessment of the overall
quality of each included study.
A review matrix was created with a row for each study and columns for the parts of the research process. Each study was abstracted one at a time.
Initially, data was extracted from the sample studies in chronolog- ical order to gain an appreciation of how the research has evolved over time and to
answer the three research questions. See Tables 1–3. The ta- bles provided an organized way to synthesize the findings using a rule of columns approach
(Garrard, 2014).

Results

Gender Differences in Chronic Sorrow

Seven studies, two qualitative, four mixed methods and one quanti- tative, addressed the differences in the experience of chronic sorrow be- tween
mothers and fathers. Five of the studies had a quality rating of good with relatively large sample sizes. Two studies were rated fair due to lack of
 sampling criteria description and a poor description of ethics and bias criteria (see Table 1). In nearly all the studies, it was re- ported that mothers
had a more intense or more significant experience of sorrow due to their child's illness or disability (Damrosch & Perry,
1989; Fraley, 1986; Hobdell, 2004; Hobdell & Deatrick, 1996; Hummel
& Eastman, 1991; Mallow & Bechtel, 1999). Explicit emotions or behav- iors reported to be displayed by these mothers included feelings of emp- tiness,
guilt or self-blaming (Fraley, 1986; Hummel & Eastman, 1991), sadness (Hobdell, 2004), fear (Fraley, 1986; Hobdell & Deatrick, 1996; Hummel &
Eastman, 1991), and depression (Hobdell & Deatrick, 1996; Hummel & Eastman, 1991).
In fathers, depression was not reported, but Hobdell and Deatrick (1996) found that fathers felt confused and were more concerned with
potential future problems and with the stigma that can be associ- ated with visible physical disabilities. Their descriptive study looked specifically
at parental differences in mood states, intensity, number of responses and in precipitating events. The results were categorized along gender lines
with responses to three open-ended questions relat- ed to emotions experienced, times when those feelings emerged and any times that caused
those findings to re-emerge. The major differ- ences between mothers and fathers in this study included the type and intensity of emotions,
with mothers reporting greater health care concerns and fathers reporting a decrease in emotions over time
110 M.B. Coughlin, K.A. Sethares / Journal of Pediatric Nursing 37 (2017) 108–116

Fig. 1. Search strategy.

Table 1
How does the experience of chronic sorrow differ between mothers and fathers?

Author(s) Year Method Sample Quality Results

rating

Fraley 1986 Mixed N = 36 parents Fair 50% of mothers felt depressed; fathers did not; mothers felt higher degree of emptiness, fear of
method child's future, guilt. Father's felt hope.
Damrosch 1989 Close-ended N = 18 fathers; N = 22 Good Nearly all experienced chronic sorrow; not significantly higher for mothers than fathers in total
& Perry survey mothers sample, but significant difference for mothers compared with fathers in mother-father pairs.
Adjustment depicted by fathers as a steady, gradual incline & time-bound while mothers reported
peaks and valleys and/or chronic, periodic crises.
Hummel & 1991 Mixed N = 103 parents (42 Fair Many significant differences between mothers and fathers with maternal frequencies almost
Eastman method couples; 2 fathers; 17 always greater than paternal on these feelings: crying easily, depression, blaming self, anger, hurt,
mothers) frustration fear and others.
Hobdell & 1996 Mixed N = 132 (68 mothers and 64 Good Mothers responses were more intense. Mothers: fear and depression; fathers: confusion. Mothers
Deatrick method fathers) reported more concerns related to social situations. Mothers reported more sorrow and greater
intensity. Fathers showed more concerns about future problems and stigma with physical
disabilities.
Mallow & 1999 Qualitative N = 28 (19 mothers, 9 Good Mothers experienced a greater resurgence and intensity of sorrow than did fathers. Recurrence of
Bechtel survey fathers) sorrow in mothers was related to management of a healthcare crisis while in fathers was with
social norms. Mothers emotions over time c/w chronic sorrow while fathers were ‘resignation’.
Suggestion of differences between mothers and fathers on adaptation mechanisms.
Hobdell 2004 Mixed N = 132 (68 mothers and 64 Good Both parents reported high intensity of acute grief in the retrospective questionnaire while the
method fathers) assessment of chronic sorrow currently depicted a lower intensity for both parents. Mothers had a
higher intensity of ‘sadness’. Significant higher reporting in mothers compared with fathers on
chronic sorrow using MANOVA.
Bowes et 2009 Qualitative N = 17 parents (10 mothers, Good Mothers far more likely to talk about feelings. Fathers found communicating feelings difficult.
al. 7 fathers)

M.B. Coughlin, K.A. Sethares / Journal of Pediatric Nursing 37 (2017) 108–116

111

Table 2
What factors have been identified to impact the experience of chronic sorrow over time?

Author(s) Year Method Sample Quality rating

Results

Factors leading to resurgence and pervasiveness of chronic sorrow

Developmental issues Health care related Internal triggers Lifestyle challenges

Wikler 1981 Mixed methods 32 Good Developmental milestones, Health crisis management
parents school entry, onset of
puberty, transition to
adult/21st
birthday/guardianship.
Fraley 1986 Mixed methods 39 Fair Falling behind another Stressor events such as Need for daycare
mothers, child developmentally surgery, discovery of another manifestation of a behavior
8 fathers medical problem problem
Hummel & 1991 Mixed methods 103 Fair Developmental delay Illness of child, surgery, Need for daycare; behavior
Eastman parents repeated illness, follow up problems
clinic visit
Cameron, et 1992 Grounded theory; 63 Fair Inability to achieve Constant reminders of their
al. retrospective mothers milestones child's limitations, contact
with another child of the same
age that is healthy; behaviors
and attitudes of people in the
community towards their
child
Hobdell & 1996 Mixed methods 68 Good Times of surgery/ies, doctor Fear of future; Financial stressors; when
Deatrick mothers, visits, re-hospitalizations, a thinking of friends or family have a baby;
64 new health problem what child will being around healthy
fathers diagnosed, a decline in health miss children; being asked about
or intermittent illness, child's diagnosis and having to
gaining an understanding of describe child's condition;
the extent of the having other children, social
problem/diagnosis, learning a interactions with friends
new procedure, a grim
prognosis
Johnsonius 1996 Phenomenological 3 Good Child's graduation from Realizing will
pilot parents high school not ever be a
grandmother;
thinking about
own death and
who will care
for child
Mallow & 1999 Qualitative 19 Good Health management crises Comparison with social norms
Bechtel mothers, (mothers) (fathers)
9 fathers
Northington 2000 Grounded theory 12 Fair Seeing child unable to play Residual effects of the disease Thoughts of the
parents like other children future
Kearney & 2001 Phenomenology 6 Good Finding out about child's Anticipating Being treated as if there were a
Griffin parents changed potential possibility of ‘death in the family’; being
child dying vulnerable as parents in public
Lee et al. 2002 Quantitative 10 Good Realization that child had Treatment failure Family events
parents delays or loss of skills
Bettle & 2009 Qualitative Single 1 Poor Struggling to meet Progressive health care needs, Uncertainty
Latimer case study mother developmental milestones; and/or new symptoms or
constant reminders of illness
aspirations child will never
achieve; realization of
child's inability to perform
simple tasks
Bowes, et al. 2009 Qualitative 17 Good Transition to adolescence; Hospitalization, giving Talking about
parents transitioning to adult injections specific events
health care provider was while being
particularly difficult. interviewed
Hewetson & 2009 Phenomenological 7 Good When expected Seeing other women
Singh mothers developmental milestones performing mothering tasks;
were not met when own child was unable to
participate in pleasurable
activities and social events
 such as birthday parties,
picnics and religious holidays
Bolch, et al. 2012 Qualitative 10 Good When discrepancies Guilt at having
mothers became apparent between to spend more
the developmental time with twin
progress between twins with greater
disabilities
Whittingham, 2013 Qualitative 8 Good Failing to reach Times of hospitalization and Coping with
et al. (b) parents developmental milestones; medical treatments reactions of
comparing child's others which

(continued on next page)

112 M.B. Coughlin, K.A. Sethares / Journal of Pediatric Nursing 37 (2017) 108–116

Table 2 (continued)

Author(s) Year Method Sample Quality rating

Results

Factors leading to resurgence and pervasiveness of chronic sorrow

Developmental issues Health care related Internal triggers Lifestyle challenges

transition periods with brought loss

siblings’ into focus
Glenn 2015 Phenomenological 16 Good Medical issues; information Learning of Online communication of
mothers overload children who negative information
had died from
the same
disease.

(Hobdell, 2004; Hobdell & Deatrick, 1996). Mallow and Bechtel (1999) also demonstrated that recurrence of sorrow was triggered by healthcare
crises in mothers.
In a qualitative study exploring parents emotional adaptation to childhood diabetes seven to ten years after the diagnosis, it was report- ed that
fathers found communicating feelings more difficult (Bowes et al., 2009). An aim of this study was to examine whether or not a differ- ence existed
between mothers and fathers on emotional adjustment. Their sample consisted of 17 parents, of whom seven were fathers. In terms of adjusting
to the child's illness over time, two studies demon- strated that fathers were more likely to be resigned to the diagnosis whereas mothers continued
to experience sorrow. Fathers were more likely to adjust over time leading to a resolution of sorrow with mothers reporting peaks and valleys or periodic
recurrences in and persistence of sorrow (Damrosch & Perry, 1989; Mallow & Bechtel, 1999).

Factors that Impact Chronic Sorrow

Sixteen of the studies addressed the factors that impact the experience of chronic sorrow over time. Four of the studies utilized a mixed methods approach,
one study employed a quantitative method and eleven studies utilized a qualitative design. A majority of the studies were of good quality but were mainly
at the descriptive level. The findings from the sixteen studies are displayed in a table along four major themes: developmental issues, health care issues,
internal triggers and lifestyle challenges (see Table 2). Twelve of the sixteen studies revealed that developmental issues have an impact on the experience
of chronic sorrow. The inability of the child to achieve expected developmental milestones or a delay in achieve- ment of milestones was reported to be a
factor that contributed to the re- currence of chronic sorrow among parents (Bettle & Latimer, 2009; Bolch et al., 2012; Cameron, Snowdon, & Orr, 1992;
Damrosch & Perry, 1989; Fraley, 1986; Hewetson & Singh, 2009; Hummel & Eastman, 1991; Lee, Strauss, Wittman, Jackson, & Carstens, 2002;
Whittingham et al., 2013). Specific milestones mentioned included when discrepancies between twins and or other siblings became apparent, school
entry, onset of puber- ty, transitioning to adolescence, graduation from high school, and 21st birthday (Bolch et al., 2012; Bowes et al., 2009;
Fraley, 1986; Johnsonius, 1996; Wikler, Wasow, & Hatfield, 1981).
Other developmental issues that emerged related specifically to the transition to adulthood with its unique challenges such as needing to change
to an adult health care provider and the consideration of who would ultimately provide guardianship should the child outlive the par- ents (Bowes et
al., 2009; Wikler et al., 1981). This issue also was evident in parents' description of the internal feelings that triggered a resur- gence of sadness.
Johnsonius (1996) found that one mother's thoughts about who would care for her child after her death was particularly painful. Northington
(2000) described parents' worry about the future. Bettle and Latimer (2009) also described parents' uncertainty about the future. Particularly poignant
was a description of the emotional toll on one parent who learned of the death of a child with the same disease as that of her own child (Glenn,
2015).
Still other developmental related factors impacting the experience of chronic sorrow in parents included seeing the child fall behind others (Fraley,
1986), seeing the child unable to play like other children (Northington, 2000), realizing that their child could not perform simple tasks or had lost
acquired skills (Bettle & Latimer, 2009; Lee et al., 2002), and reminders of aspirations the child will never achieve (Bettle & Latimer, 2009).
Health care related issues proved to be important factors in the ex- perience of chronic sorrow among parents. In addition to management of a
particular health crisis, specific issues included surgeries, clinic visits, a decline in health, learning of the child's changed potential, hos- pitalizations
and information overload (Bowes et al., 2009; Glenn, 2015; Kearney & Griffin, 2001; Mallow & Bechtel, 1999; Whittingham et al.,
2013). Receiving information about the child's state of health appeared several times in the literature. Hobdell and Deatrick (1996) described the
impact parents felt when they had come to achieve a greater under- standing of the extent of their child's diagnosis and the ramifications of receiving
a grim prognosis. The actual tasks involved in caring for the child also were reported to have an impact on the experience of chronic sorrow. Bowes
et al. (2009), described parents having to give injections as an impact while Hobdell and Deatrick (1996) reported on parents needing to learn a new
procedure as influencing their experience.
Additional internal triggers that affected the chronic sorrow experi- ence beyond fearing the future included thinking about what the child would
miss (Hobdell & Deatrick, 1996), a mother's realization that she would never be a grandmother (Johnsonius, 1996), anticipating the possibility of
the child dying (Kearney & Griffin, 2001), and the emo- tional toll of being interviewed by researchers about their experience (Bowes et al., 2009).
Guilt emerged as an emotion that triggered sorrow when a mother needed to spend more time with the sick twin than with the healthy one (Bolch et
al., 2012) and one parent reported on the im- pact that coping with the reactions of others had on the experience of sorrow (Whittingham et al.,
2013).
Lifestyle issues were another category of factors impacting the expe- rience of chronic sorrow among parents. In Cameron et al., 1992, parents reported
the effect that attitudes of people in their community towards their child had on their emotional experience. Hobdell and Deatrick (1996) reported
the significance of parents needing to explain their child's diagnosis to others and how having a chronically ill child impact- ed their social interactions
with friends. Feeling vulnerable was how one parent described being out in public (Kearney & Griffin, 2001). Childrens' birthday parties, picnics and
holidays triggered a resurgence of sorrow for parents whose child could not participate (Hewetson & Singh,
2009). Two studies revealed the need for daycare as a lifestyle issue hav- ing an impact on the experience of chronic sorrow because it was a chal- lenge
to find one where parents felt comfortable leaving their child (Fraley, 1986; Hummel & Eastman, 1991). Comparing themselves with parents of
healthy children was a factor in the experience of chronic sor- row. In Hewetson and Singh (2009), a mother described seeing other women performing
usual mothering tasks as triggering sorrow. In Mallow and Bechtel (1999), a father felt sorrow when comparing his
M.B. Coughlin, K.A. Sethares / Journal of Pediatric Nursing 37 (2017) 108–116
113

Table 3
What strategies by health care providers for helping parents cope with chronic sorrow have been identified to be most and least helpful?

Study Year Method Sample Quality Strategies most helpful Strategies least helpful
rating

Providing Compassionate care Providing

information resources

Fraley 1986 Descriptive closed N = 36 Fair If health care Recognition by health care
& open-ended parents professionals offered providers of normalcy of feelings
survey more explanations parents were having; more support
about baby's from health care team
condition, treatments
and procedures
Damrosch 1989 Close-ended N = 18 Good Giving parents Assuming cheerful attitude towards Giving
& Perry survey fathers; positive feedback parents; encouraging parents not to parents
N = 22 dwell on the negative; encouraging chance to
mothers expression of sadness; encouraging escape
parents to be strong; allowing situation
parents to be weak;
Cameron, 1992 Descriptive, N = 63 Good Barriers to gaining access to health
Snowden qualitative, mothers care system and delays in getting
& Orr retrospective appointments
Gravelle 1997 Phenomenological N=8 Good Community Respite care Needing to form relationships with
parents education about crucial; numerous health care providers;
children with equipment frustration with bureaucracy and
disabilities. and method of service allocation
assistive
devices
Mallow & 1999 Open-ended N = 28 Good Providing holistic, individualized, Appropriate ‘Scaring, blaming and making
Bechtel survey (19 family-based care; recognizing referrals parents feel guilty’
mothers, differences in adaptation between
9 mothers and fathers; being
fathers) proactively involved
Kearney & 2001 Phenomenological N=6 Good Being sensitive and honest; ‘Being left on their own’; hopeless
Griffin parents communicating hope; assisting prognoses; conflicting information
parents in searching for meaning
Bettle & 2009 Case study N=1 Poor Misinterpreting parental advocacy
Latimer mother and information-seeking as denial
Bowes, et 2009 Qualitative N = 17 Good Lack of emotional support by
al. parents healthcare providers; lack of
(10 identification of emotional needs of
mothers) parents
Hewetson 2009 Phenomenological N=7 Good Imparting skills; Showing interest in child; Providing Feeling pressure and being judged;
& Singh mothers allowing mother to acknowledging mother's efforts; options not allowing enough time to learn
make decisions displaying kindness, developing a important skills needed to care for
relationship with the mother, child; insensitivity to manner and
partnership rather than place information was shared;
paternalistic relationship making inaccurate assumptions;
failing to demonstrate true interest
in child; excluding parent from
discussions; failing to meet parents
needs for information.
Bolch, et al. 2012 Qualitative N = 10 Good Care that is empathic and Callous or discourteous care; not
mothers respectful; empowering parent listening.
Glenn 2015 Phenomenological N = 16 Good Information Help Not providing parents with
mothers consideration and parents find information or providing
knowledge; online unhelpful/inaccurate information.
Respect how much community When health care providers
mothers know withhold information and only
provide a limited amount. When
health care providers do not
‘partner’ or collaborate with parents;
feeling discounted.

experience with social norms. Other issues mentioned as lifestyle factors included financial stressors (Hobdell & Deatrick, 1996), behavior prob- lems
in the child (Fraley, 1986; Hummel & Eastman, 1991), when friends or family have a baby (Hobdell & Deatrick, 1996), and seeing negative in- formation
online (Glenn, 2015).
 Helpful Strategies

Eleven studies answered the question of what strategies by health care providers for parents with chronic sorrow were most or least help- ful. All
but one of the studies utilized a qualitative design. All but two
studies earned a quality rating of good using the criteria described by Hawker et al. (2002). In the studies, strategies considered helpful and not
helpful were reported. A table displays the findings related to this question (see Table 3). Given the qualitative nature of the research, the findings
are often in the words of study participants, the parents, and will be discussed in terms of common themes.
A prominent helpful theme that emerged was that of empathy and compassion. Findings from Kearney and Griffin (2001) revealed that parents
appreciated ‘sensitivity and honesty’. ‘Displays of kindness’ and ‘developing a relationship with the mother’ were considered help- ful strategies
(Hewetson & Singh, 2009). In Bolch et al. (2012) and Glenn
114 M.B. Coughlin, K.A. Sethares / Journal of Pediatric Nursing 37 (2017) 108–116
(2015), helpful strategies were reported to be ‘care that is empathic and respectful’ and the provision of ‘compassion and empathy’. Recognizing parents'
feelings as ‘normal’ was also considered a helpful strategy (Fraley, 1986) as well as allowing them to express their sadness and ac- cept feelings
of weakness while encouraging them to be strong (Damrosch & Perry, 1989). Emotional support by health care providers that was ‘family-
centered’, hopeful, respectful and compassionate was helpful to parents as reported in Bolch et al., 2012; Glenn, 2015; Kearney & Griffin, 2001;
Mallow & Bechtel, 1999.
Providing information proved to be a strategy considered helpful by parents. In Fraley (1986), parents appreciated more explanations about baby's
condition, treatments and procedures. Knowledge was empowering to parents. Parents appreciated providers who offered in- formation regarding
available services and sources of funding (Gravelle, 1997). Hewetson and Singh (2009) and Glenn (2015) report- ed that parents found health care
providers who displayed an interest in their child and the child's illness to be positive. While Mallow and Bechtel (1999) reported that parents
found it helpful when providers were proactive.
“Escape” or “respite” appeared frequently in the literature as a strat-
egy that parents considered helpful. In Damrosch and Perry (1989) it was reported that parents appreciated health care providers giving them
a chance ‘to escape the situation.’ Parents described respite care to be ‘crucial’ in Gravelle, 1997. Other resource strategies parents re- ported to be
helpful were providing equipment and assistive devices, appropriate referrals, providing options, and helping parents find an on- line community
(Glenn, 2015; Gravelle, 1997; Hewetson & Singh, 2009; Mallow & Bechtel, 1999).

Unhelpful Strategies

Unhelpful strategies reported by parents in the reviewed studies in- cluded methods of interaction or communication that were perceived in a less
than favorable way. Parents reported that some providers spoke to them in a way that left them feeling scared, guilty or responsible in some way
about some aspect of the child's condition (Mallow & Bechtel, 1999). In Bolch et al. (2012) parents reported discourteousness and feeling as though
they were not being listened to. Glenn (2015) de- scribed parents feeling dissatisfied with care when they didn't feel like a
‘partner’ or there was no sense of collaboration. This led to parents feel-
ing ‘discounted’. And, when resources were not forthcoming or when there were logistical issues such as barriers to the health care system and
delays in getting appointments, as well as certain methods of ser- vice allocation it was perceived as unhelpful (Cameron et al., 1992; Gravelle,
1997).
As much as providing information to parents was perceived as help- ful, the way in which it was provided was sometimes interpreted as un- helpful.
Particular concerns were raised around not being given enough time to learn important skills, insensitivity to a lack of privacy where in- formation was
shared, making inaccurate assumptions about parents' level of understanding and excluding parents from discussions (Hewetson & Singh,
2009). Kearney and Griffin (2001) described that parents were made to feel they were ‘on their own’, that information given was conflicting. And,
when parents sought information they were at times perceived to be in denial (Bettle & Latimer, 2009).

Discussion

The strength of the evidence from this review lies in the consistency of findings across studies for each of the research questions. The major- ity of
evidence reviewed used in this article was rated as good based on the review criteria described in this article. The first research question aimed to
determine the differences in the experience of chronic sorrow between mothers and fathers. The results demonstrated repeatedly that mothers
experience a greater sense of sorrow when compared to fa- thers. In addition, nearly all the studies showed that the sorrow is
permanent in mothers whereas fathers tend to resolve their grief. Even though parental roles have evolved over the period of time that these
studies were conducted to be more equal, it continues to be re- ported that mothers remain the primary caregiver of children in most instances.
They deal with the day to day issues, attend most of the med- ical appointments and tend to spend more time overall with the child compared with
fathers. The constant reminder of the disparity between the ‘hoped-for child’ and the ill or disabled child as described by Teel (1991) is therefore
more ever-present for the mother and it is this dis- parity that Eakes et al. (1998) define as the ‘key antecedent’ to chronic sorrow. Managing the
child's illness, therefore, becomes predominantly the mother's responsibility.
Issues related to the healthcare of the child appeared to be important factors attributing to the experience of chronic sorrow. Even though both
parents experienced the effects of managing the child's health care crises, mothers are reported to play a major role in disease manage- ment (Lowes
& Lyne, 2000). These findings are significant for healthcare providers who interact with these families. A greater understanding of the experience of
chronic sorrow for both mothers and fathers will lead to more individualized approaches and interventions.
There are specific factors which lead to the resurgence and/or perva- siveness of chronic sorrow over time. In addition to health care manage- ment,
developmental milestones and lifestyle challenges were shown to contribute to how parents experience chronic sorrow. These themes were
represented in nearly all of the 16 studies that addressed the sec- ond research question of factors impacting the experience of chronic sorrow over
time. Given that all the studies synthesized included qual- itative data, many of the findings were in the participants own words. However, the results
aligned consistently within the identified themes of healthcare and developmental issues, internal factors and lifestyle issues.
Depicted as a recurring process with no predictable end, the chronic sorrow model reveals a cyclical pattern where ‘trigger events’ cause a
resurgence of sorrow at particular times during one's lifespan by bring- ing the disparity of the initial loss experience into heightened focus (Eakes
et al., 1998). The reviewed literature supports the presence of these trigger events, often predictable lifespan events, that bring the original loss
to the surface and persist throughout the child's life. Olshansky (1962) suggested that parents would ultimately require sup- port from health care
professionals at repeated intervals over a long pe- riod of time implying that there would be times that the sorrow would resurface. The events described
in this review correspond to the concep- tual definition of trigger events identified in the middle range theory of chronic sorrow (Eakes et al., 1998).
An important aim of this review was to identify strategies by health care providers that alleviate parental sorrow and increase comfort. In their
theory, Eakes et al. (1998) conceptually define these strategies as external management methods and highlight the healthcare provider role of
‘teacher’ as particularly important to parents. The reviewed stud- ies reported that provision of information about the child's condition in a way that is
sensitive and respectful is helpful for parents caring for a child with a chronic illness or disability. Another helpful strategy ex- posed in this review
was that of healthcare providers' ability to recog- nize and support the parents' need for a break from the constant role of caretaker. Olshansky
(1962) described the need for parents to have access to opportunities to be away from the child in order for mothers to get “much needed relief” (p.
193). The findings in this review noted that the need for daycare was a lifestyle challenge reported by parents especially given the special needs of
the child.
The theme of providing compassionate care appeared repeatedly in the literature. Studies consistently reported parents' descriptions of their
need for kindness, compassion and respect from providers. This re- veals an obligation for health care providers to address the emotional needs of
parents in a way that helps parents feel cared for and support- ed. In terms of strategies found to be least helpful by parents, the reviewed studies
also demonstrated little variability in results. Reports
M.B. Coughlin, K.A. Sethares / Journal of Pediatric Nursing 37 (2017) 108–116
115
included parents' narratives around being made to feel pressured, guilty, scared, and hopeless. These accounts raise concern about how parents
of children with special health care needs are treated in the pe- diatric setting. Family-centered care dictates that pediatric health care providers
involve the entire family in the plan of care. Undoubtedly, in a busy pediatric office setting, there are factors that negatively impact the provision of
care that feels compassionate and unrushed to parents. However, this does not justify providers coming across as insensitive. At the very least, these
findings serve as a reminder to pediatric health pro- viders to remain mindful in their interactions with parents, even under the most stressful conditions,
and ensure that the needs of the parents, as well as the child's, are met.

Limitations

A potential limitation of this review relates to the search strategy. The search terms of chronic sorrow and parents could have led to miss- ing
studies that discussed the same phenomenon but that used other re- lated terms such as grief, depression or sadness. The application of the inclusion
and exclusion criteria meant that articles published in lan- guages other than English were not reviewed. In addition, the experi- ence of chronic
sorrow in parents of children with a progressive and terminal diagnosis were not considered. Methodologic limitations in- clude using an appraisal
tool developed decades after some of the reviewed studies were published. This may have led to erroneously lower appraisal scores on some
reports given the standards for writing research reports has evolved over that time period.

Implications

The findings in this review are relevant for healthcare providers who care for children with a chronic illness or disability. Parents need to be
approached not just as parents, but as individuals with unique experi- ences and methods of dealing with chronic sorrow. The findings that re- veal
the unique experience of chronic sorrow in fathers will allow healthcare providers to tailor communication and interventions to their needs
as well as to the needs of the mother. Understanding the im- pact that health care crises have on parents reinforces the need for the provider to be
especially patient, compassionate and supportive. Healthcare providers need to anticipate likely trigger events and not only prepare parents,
but be proactive in guiding them through these challenging periods. Parents' identified need to express their sadness and to find meaning in their
experience suggests that additional time be added to routine and episodic health care appointments. Efforts should be made to provide access to
care when needed without delay. Pediatric care is family-centered. This review further supports that healthcare providers should involve parents
in the planning of care, should elicit their needs relative to respite and day care issues and be re- spectful of their role as an expert in the care of their
child.
Given the increase in the prevalence of chronic illness and disabil- ities in children, the need for research on the impact that this has on par- ents
will need to continue. The evidence supports that parents of children with a chronic illness or disability experience chronic sorrow and also that
triggers posited in the model are supported by evidence. Further research should include studies designed to answer the ques- tion of how the
experience of chronic sorrow can be modified through interventions. Additional research to create reliable measures to adequately differentiate
chronic sorrow from depression or other emo- tional responses will also help clinicians committed to assisting this population. Studies should also
be designed to elicit the experience of the health care provider interacting with parents with chronic sorrow in the busy pediatric office setting.
Finally, a greater understanding of parental predictors of the experience of chronic sorrow will further enhance future assessment and
treatment of parents with this problem.
Conclusion

This review synthesized qualitative and quantitative research pub- lished between 1981 and 2015 on the experience of chronic sorrow in parents
of children with a chronic illness or disability. The purpose of conducting this literature review was to provide a synthesis of the liter- ature to date
and to examine the research on this population with a focus on three specific questions. An exhaustive search revealed a col- lection of studies
addressing the concept of chronic sorrow in parents of children with a chronic illness or disability. The data analysis led to the identification of
themes and provides a context for new research. The synthesis included findings related to gender differences in the ex- perience of chronic sorrow
between mothers and fathers, factors that impact the experience of chronic sorrow in parents over time and the strategies by health care providers
found to be most and least helpful by parents with chronic sorrow. This literature review provides a higher level of evidence compared with individual
research reports by inte- grating the results of multiple studies leading to a strengthened evi- dence base. Clinicians and researchers will hopefully
find this work to be a useful contribution to this body of literature.

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