Parenting an Infant with a Congenital Anomaly: How are Perceived Burden and Perceived Personal Benefits Related to Parenting Stress?

Fonseca, Ana; Nazaré, Bárbara; Canavarro, Maria Cristina

doi:10.1007/s10880-015-9418-7

Cited by 11 publications

(10 citation statements)

References 46 publications

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“…For example, they discussed family support both emotionally and financially, acceptance of their children “like a normal child,” using spirituality to make meaning of their child’s condition, and the importance of having a valued social circle of friends and neighbors. Our findings are also consistent with Fonseca et al (2015), who reported that how parents perceive their child’s condition can be an important factor to increase parental adaptation and positive parenting practices.…”

Section: Discussionsupporting

confidence: 92%

“…In this sample, parents reported reliance on religion as a source of strength and meaning-making, consistent with other studies in the extant craniofacial literature (eg, Egan et al, 2011;Fonseca et al, 2015;Stock, Feragen, & Rumsey, 2016). Viewing their child's diagnosis with Apert syndrome as a test of their faith, a gateway to heaven or as part of God's plan particularly helped them with their own adaptation and coping with other people's reactions, staying grounded, taking care of their children, and promoting their children's independence and social skills.…”

Section: Discussionsupporting

confidence: 87%

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Social Experiences of Turkish Parents Raising a Child With Apert Syndrome: A Qualitative Study

Saydam

Çüçülayef²,

Doğan³

et al. 2020

The Cleft Palate Craniofacial Journal

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Objective: Apert syndrome is a rare and understudied craniofacial condition with regard to its psychosocial impact on children and their parents. Due to the lack of studies focusing solely on the social experiences of children and families with Apert syndrome, it is difficult to develop interventions and strategies to support well-being and positive adjustment for this particular population. This study addressed this gap by assessing the unique social experiences of parents who are raising their children with Apert syndrome including difficulties they face and strategies they use to cope with challenges. Design: Descriptive qualitative study using thematic analysis. Participants: Participants included 21 parents of 12 children (aged 1-12 years) with Apert syndrome (9 couples, 2 fathers, and 1 mother) who were recruited from a pediatric neurosurgery unit in Turkey. Results: The qualitative analysis yielded four main themes describing the experiences of parents including (1) social challenges; (2) coping with negative reactions; (3) promoting socialization and independence; and (4) sources of strength. Conclusions: Parents reported several challenges, including social stigmatization, and utilized a range of strategies to support both their own and their child’s positive adaptation and resiliency, including the use of religion and reliance on their spouses for support. Results offer clinically relevant insights about the strengths and challenges of families coping with Apert syndrome.

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Section: Discussionsupporting

confidence: 92%

Section: Discussionsupporting

confidence: 87%

Social Experiences of Turkish Parents Raising a Child With Apert Syndrome: A Qualitative Study

Saydam

Çüçülayef²,

Doğan³

et al. 2020

The Cleft Palate Craniofacial Journal

View full text Add to dashboard Cite

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“…We identified a wide range of parent‐reported impact, and while the median score was low, 5 (16%) parents returned a score of 35 or more, suggesting that their burden of care was significant. We saw that the median IOFS score for our cohort was similar to the mean scores reported in studies of children with congenital conditions including cerebral palsy and children with a range of congenital anomalies of the heart, nervous system, digestive system and urinary system 19‐21 . However, the impact on families caring for boys with PUV and moderate or severe CKD was significantly higher and was in a similar range to that reported by parents of children with brain cancer and chronic respiratory failure 22,23 .…”

Section: Discussionsupporting

confidence: 80%

“…We saw that the median IOFS score for our cohort was similar to the mean scores reported in studies of children with congenital conditions including cerebral palsy and children with a range of congenital anomalies of the heart, nervous system, digestive system and urinary system. [19][20][21] However, the impact on families caring for boys with PUV and moderate or severe CKD was significantly higher and was in a similar range to that reported by parents of children with brain cancer and chronic respiratory failure. 22,23 Our study findings that 62.5% of this subgroup felt like they lived on a roller coaster is similar to the level of that reported by families caring for childhood brain cancer.…”

Section: Discussionsupporting

confidence: 54%

The impact of caring for children with posterior urethral valves

et al. 2020

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Aim To investigate and describe factors contributing to the impact of caring for a child with posterior urethral valves and to determine the extent to which families view their care as family‐centred, and whether this can affect the impact of care. Methods A cross‐sectional, survey‐based study involving primary caregivers of children with posterior urethral valves. Caregivers completed the Impact on Family Scale (IOFS) and the Measure of Processes of Care (MPOC). Regression analyses were used to assess the relationship between child‐related variables, demographic variables, MPOC and IOFS scores. Results Thirty‐one primary caregivers completed both questionnaires. Caregivers of children with moderate/severe chronic kidney disease (CKD) scored higher on the IOFS compared to those caring for children with mild CKD. Caregivers rated care received highly but reported lower scores in subscales related to information provision. Receiving less respectful and supportive care was significantly associated with lower IOFS scores. Conclusion The impact of caring for a child with posterior urethral valves is variable and is strongly determined by the severity of the associated CKD. Further research is required to show whether improving family centredness of care can reduce the impact of caring for children with posterior urethral valves.

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“…Parental cognitions, such as perception of an event as predictable and controllable, may also minimize the impact of stress on adaptation by empowering the family unit to cope with demands [ 57 ]. High perceived stress has been shown to negatively influence family adaptation to chronic childhood disease [ 17 , 18 , 20 , 24 , 55 , 58 ] and contribute to increased negative perceptions of stressful situations, perceived manageability, and meaningfulness of life [ 28 ]. In our study, caregivers who reported their recent stress as more manageable also reported higher FQoL.…”

Section: Discussionmentioning

confidence: 99%

Perceived quality of life among caregivers of children with a childhood-onset dystrophinopathy: a double ABCX model of caregiver stressors and perceived resources

Frishman

Conway

Andrews

et al. 2017

Health Qual Life Outcomes

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BackgroundDuchenne and Becker muscular dystrophies, collectively referred to as dystrophinopathies, are recessive X-linked disorders characterized by progressive muscle weakness and ultimately cardiac and respiratory failure. Immediate family members are often primary caregivers of individuals with a dystrophinopathy.MethodsWe explored the impact of this role by inviting primary caregivers (n = 209) of males diagnosed with childhood-onset dystrophinopathy who were identified by the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) to complete a mailed questionnaire measuring perceived social support and stress, spirituality, and family quality of life (FQoL). Bivariate and multivariate analyses examined associations between study variables using the Double ABCX model as an analytic framework.ResultsHigher stressor pile-up was associated with lower perceived social support (r = -0.29, p < .001), availability of supportive family (r = -0.30, p < .001) or non-family (r = -0.19, p < .01) relationships, and higher perceived stress (r = 0.33, p < .001); but not with spirituality (r = -0.14, p > 0.05). FQoL was positively associated with all support measures (correlations ranged from: 0.25 to 0.58, p-values 0.01–0.001) and negatively associated with perceived stress and control (r = -0.49, p < .001). The association between stressor pile-up and FQoL was completely mediated through global perceived social support, supportive family relationships, and perceived stress and control; supportive non-family relationships did not remain statistically significant after controlling for other mediators.ConclusionsFindings suggest caregiver adaptation to a dystrophinopathy diagnosis can be optimized by increased perceived control, supporting family resources, and creation of a healthy family identity. Our findings will help identify areas for family intervention and guide clinicians in identifying resources that minimize stress and maximize family adaptation.

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Parenting an Infant with a Congenital Anomaly: How are Perceived Burden and Perceived Personal Benefits Related to Parenting Stress?

Cited by 11 publications

References 46 publications

Social Experiences of Turkish Parents Raising a Child With Apert Syndrome: A Qualitative Study

Social Experiences of Turkish Parents Raising a Child With Apert Syndrome: A Qualitative Study

The impact of caring for children with posterior urethral valves

Perceived quality of life among caregivers of children with a childhood-onset dystrophinopathy: a double ABCX model of caregiver stressors and perceived resources

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