Between joy and sorrow: being a parent of a child with developmental disability

Kearney, Penelope M; Griffin, Timothy

doi:10.1046/j.1365-2648.2001.01787.x

Cited by 180 publications

(160 citation statements)

References 38 publications

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“…Although parents' hope in the face of a DCA may be interpreted by health professionals as difficulty accepting the diagnosis, some studies with parents of disabled children suggest that hope in the future does not constitute a withdrawal from reality, but an important feature which may be beneficial for parents' healthy functioning and wellbeing (Kearney & Griffin, 2001;Larson, 1998).…”

Section: Discussionmentioning

confidence: 99%

“…Health professionals should provide factual and truthful information about the DCA, leaving room not only for negative but also for positive parental emotions, like hope or optimism (Kearney & Griffin, 2001), which may constitute a resource that allows parents to continue facing the future (Larson, 1998). The non-recognition by health professionals of the possibility of positive emotions associated with the diagnosis establishes a deterministic view, which can undermine the mobilization of resources to deal with the situation (Dale et al, 2011).…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Patterns of parental emotional reactions after a pre- or postnatal diagnosis of a congenital anomaly

Fonseca

Nazaré

Canavarro

2011

Journal of Reproductive and Infant Psychology

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Patterns of parental emotional reactions after a pre- or postnatal diagnosis of a congenital anomaly

Fonseca

Nazaré

Canavarro

2011

Journal of Reproductive and Infant Psychology

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“…In spite of the abovementioned stresses associated with caring for a child with a developmental disability, many such families have been found to adapt successfully and even thrive following the diagnosis (Bayat, 2007;Hastings & Taunt, 2002;Kearney & Griffin, 2001;Wallander & Varni, 1998). By identifying the strengths contributing to resilience in these families, interventions and support programmes can be implemented to strengthen these resources and thus facilitate coping in those families struggling to adapt (Ellis & Hirsch, 2000).…”

Section: Motivation For the Studymentioning

confidence: 99%

“…In spite of much work in recent years to change this perception, people with disabilities are often still viewed as "deficient" (Gross & Hahn, 2004;Parekh & Jackson, 1997) and as a burden on society (Turnbull & Turnbull, cited in Kearney & Griffin, 2001) and the family (Beckman, 1991;Weisner, et al, 1991). For this reason, the birth of a child with a disability is perceived as devastating (Gatford, 2001).…”

Section: The Social Construct Of Disabilitymentioning

confidence: 99%

Resilience in families of children with developmental disabilities.

Greeff¹,

Nolting²

2013

Families, Systems, & Health

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DeclarationBy submitting this dissertation electronically, I declare that the entirety of the work contained therein is my own, original work, that I am the owner of the copyright thereof (unless to the extent explicitly otherwise stated) and that I have not previously in its entirety or in part submitted it for obtaining any qualification. First and foremost, I would like to thank the families that agreed to participate in this study.Without their input this study would not have been possible.Thank you also to Mr Davis, the principal of the Dorothea School in Cloetesville, for his help in identifying families meeting the selection criteria and for facilitating my contact with these families.A big thank you to my supervisor, Professor Abraham Greeff, for his ongoing patience, support and encouragement, not to mention all his valuable input regarding the research design, the implementation thereof and ultimately, the writing of this document.Thank you to Professor Martin Kidd for conducting the statistical analyses of the data, and for patiently explaining away any uncertainties.To my siblings and all my friends, thank you for the emotional and practical support provided.And last, but definitely not least, a big thank you to my wonderful parents. Thank you for your continuing and unconditional love and support, and for believing in me even when I didn't. I couldn't have done it without you! iv SUMMARY Family resilience refers to the family's ability to overcome adversity using inherent and/or acquired strengths and resources. The aim of this study was to identify factors contributing to the successful adaptation, or resilience, of families following the birth or diagnosis of a child with a developmental disability. The study is based on the theoretical frameworks of family resilience proposed by and Walsh (2003) Quantitative data was analysed through analyses of variance, Pearson product-moment correlations and a multiple regression analysis. The qualitative data was analysed using thematic content analysis. These analyses revealed that an acceptance of the situation, positive patterns of family communication, commitment and support within the family unit, and a positive attitude with regard to new experiences and challenges facilitate family adaptation and resilience, while negative patterns of communication within the family were found to be inversely related to family adaptation. An inverse association was also found between age of the child with a disability and family adaptation. These findings suggest some possible avenues of intervention by which the adaptation of families with a child with a developmental disability in South Africa can be facilitated or supported. v OPSOMMING Gesinsveerkragtigheid verwys na die gesin se vermoë om terugslae en teenspoed te oorkom deur die gebruik van bestaande en aangeleerde sterktes en hulpbronne. Die doel van die huidige studie was om kwaliteite te identifiseer wat tot die aanpassing, en dus veerkragtigheid, van gesinne met 'n kind met 'n ontwikkelingsgestremdheid bydra...

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“…Other studies in families of children with a disability recognize the positive effects these children can have on their family members, including better parent-child interactions, more family cohesion and a stronger life purpose Quality of Life 4 (Flaherty & Glidden, 2000;Glidden, Bamberger, Turek, & Hill, 2010;Green, 2007; Hastings & Taunt, 2002;Kearney & Griffin, 2001;Taanila, Jarvelin, & Kokkonen, 1999). Thus some families seem to do well despite the extra stressor of the disability of their child, while others struggle and succumb.…”

Section: Introductionmentioning

confidence: 99%

Quality of Life in Adolescents with a Disability and Their Parents: The Mediating Role of Social Support and Resilience

et al. 2012

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The aim of this study was to test whether the effect of the pile-up of demands associated with a disability on quality of One of the core notions in the systemic approach is that families form an interactive and interdependent system where what happens to one family member will also affect all the other members of the system (Goldenberg & Goldenberg, 2003;Turnbull & Turnbull, 2001). The disability of a child is such an event that will affect the whole family. Compared to families with typically developing children, a child with a disability poses specific challenges. A multitude of adverse effects of a disability on the family have been found, including higher levels of stress, lower well-being, more negative feelings on parenting, less marital satisfaction, a financial and a caretaker burden (Baker, Blacher, & Olsson, 2005;Blacher & McIntyre, 2006;Hatton & Emerson, 2003;Hunfeld et al., 2001;Maes, Broekman, Dosen, & Nauts, 2003;McIntyre, Blacher, & Baker, 2002;Wilkinson et al., 2001).However, research in families with a child with a disability is inconclusive regarding the impact of the disability on the family. Other studies in families of children with a disability recognize the positive effects these children can have on their family members, including better parent-child interactions, more family cohesion and a stronger life purpose Quality of Life 4 (Flaherty & Glidden, 2000;Glidden, Bamberger, Turek, & Hill, 2010;Green, 2007; Hastings & Taunt, 2002;Kearney & Griffin, 2001;Taanila, Jarvelin, & Kokkonen, 1999). Thus some families seem to do well despite the extra stressor of the disability of their child, while others struggle and succumb.There is a large body of literature suggesting several individual and family characteristics that are positively related to the family's adaptation to a child with a disability. Social support, resilience, good family cohesion, effective coping skills and positive cognitive appraisals might all influence the potential negative impact of the disability on the family (Lavee, Hamilton, & Patterson, 1985;Saloviita, Itälinna, & Leinonen, 2003;Taanila et al., 1999;Tak & McCubbin, 2002).It has become apparent that individual and family outcomes due to the impact of a pile-up of demands associated with living with a disability are the result of multiple factors interacting with each other. Therefore a multivariate model incorporating both psychological and social variables that could intervene between the stressor and the outcome is needed. The double ABCX model of McCubbin and Patterson (1983) is one of the most influential theoretical frameworks in this field. The model provides a theoretical basis for examining the effect of a stressor and pile-up of demands (factor aA) on the family adaptation (factor XX) through the Quality of Life 5 mediation of the existing and expanding family recourses (factor bB), the meaning the family assigns to their situation (factor cC), and the coping strategies employed by the family (factor BC) (Jacques, 2006;McCubbin & Patterson, 1983), w...

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Between joy and sorrow: being a parent of a child with developmental disability

Abstract: This phenomenological interpretation provides insight and understanding into the parents' experiences and has implications for practice, education and research in nursing.

Cited by 180 publications

References 38 publications

Patterns of parental emotional reactions after a pre- or postnatal diagnosis of a congenital anomaly

Patterns of parental emotional reactions after a pre- or postnatal diagnosis of a congenital anomaly

Resilience in families of children with developmental disabilities.

Quality of Life in Adolescents with a Disability and Their Parents: The Mediating Role of Social Support and Resilience

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