Embracing Each Other and Growing Together: Redefining the Meaning of Caregiving a Child with Disabilities

Lee, Yoon-Joo; Park, Hye Jun; Recchia, Susan L.

doi:10.1007/s10826-015-0175-x

Cited by 35 publications

(16 citation statements)

References 45 publications

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“…Jacoby and Austin [ 12 ] highlighted that friends or relatives would feel nervous around a child with epilepsy and would become afraid to be left alone with the child as they did not know how to perform first aid if the child had an episode of seizure. Studies have indicated that when seizures occur quite early in life and the person is being frequently quiet and resistant to treatment then the person is at higher risk of cognitive deficits which could also depend upon other factors like the number, duration, type of seizure, and antiepileptic drug therapy [ 13 , 14 ].…”

Section: Discussionmentioning

confidence: 99%

Stress and perceived stigma among parents of children with epilepsy

Rani

Thomas

2019

Neurol Sci

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Purpose The present study aimed at understanding the stress and perceived stigma among parents of children with epilepsy seeking treatment at a tertiary referral center for neurology in South India. Materials and methods Parents of sixty children suffering from epilepsy in the age group of 4–15 years were interviewed to explore parental stress and perceived stigma. They were recruited consecutively over a period of 6 months in 2015. Tools administered were Childhood-Illness related Parenting Stress Inventory (Manford in J Neurol 264(8):1811–24, 2017 ) and the Parent Stigma Scale (Baca et al. in Value Health 13(6):778–786, 2010 ). Results The mean age of parents was 37.2 years, and the majority of parents who used to bring their child to the hospital were male (71.7%) and educated up to the secondary/intermediate level (36%) and were from lower socio-economic status. The mean age of children with epilepsy was 8.4 years with the majority of them being male (66.7%), affected with chronic seizures (58.3%) with most commonly occurring seizure type being generalized seizures (50%), with a co-morbid diagnosis of cerebral palsy (26.7%). A significant number of parents reported difficulty in communicating with medical team (58.3%) and significant others (51.7%) about their child’s seizures and difficulty in making decisions related to their child’s medical care (43.3%) which strained their financial resources and created difficulty in adequate role functioning. Findings indicated that most of the parents of children with chronic seizures perceived reactions of others to be negative (53.3%) and would limit family social interaction which resulted into emotional reaction in the form of anger, guilt, fear, anxiety, and depression. Conclusion Parents are important figures in the process by which children with epilepsy came to acknowledge themselves being different from other children. Parents often feared divulging their child’s epilepsy to their friends and relatives because they experienced a sense of shame, self-blame, and rejection which also increased their stress.

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Section: Discussionmentioning

confidence: 99%

Stress and perceived stigma among parents of children with epilepsy

Rani

Thomas

2019

Neurol Sci

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“…Resilience was operationalized through different empirical models (Zautra et al, 2012) in studies involving parents of children with physical and mental disabilities. Resilience facets were identified among primary caregivers of children and adolescents with autism (Bayat, 2007), among mothers of children and adults with disabilities (Lee, Park, & Recchia, 2015), and in couples of parents of young children with severe disability (Graungaard, Andersen, & Skov, 2011). Resilience processes and trajectories were detected and analyzed among families of 3-year-old children with intellectual disabilities (Gerstein, Crnic, Blacher, & Baker, 2009); results highlighted the relevance of individual parent characteristics, quality of dyadic relationships and inter-parental influences in the adjustment to child disability.…”

Section: Parents' Well-being and Resilience: Recent Topics In Disabilmentioning

confidence: 97%

Resilience as a moderator between Objective and Subjective Burden among parents of children with ADHD

Fossati

Negri

Fianco

et al. 2020

Archives of Psychiatric Nursing

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The caring related challenges reported by parents of children with Attention Deficit and Hyperactivity Disorder (ADHD) were widely investigated. Little information is instead available on the resources mobilized by these parents in facing caring burden. In the attempt to fill this gap, the present study aimed at exploring the moderating role of resilience in the relationship between the amount of time parents of children with ADHD devote to caring tasks (objective burden) and their emotional and social burden (subjective burden). A multidimensional model of resilience was adopted, comprising six components: Self-Perception, Planned Future, Structured Style, Social Competence, Family Cohesion, and Social Resources. Participants were 44 parents (81.8% females, aged 31-53) of children with ADHD (86.4% males, aged 6-14). They completed the Caregiver Burden Inventory, the Resilience Scale for Adults, and the 36-Item Short Form Health Survey. Hierarchical regressions were performed to test the moderating role of resilience as a global construct, and of each resilience dimension separately, on the relation between objective and subjective burden; participants' gender and mental health scores were employed as control variables. Total resilience, Family Cohesion and Self-Perception emerged as protective factors, weakening the relationship between subjective and objective burden. Findings suggest that the potential of individual and family resources in promoting parents' adjustment to caring burden could be more effectively exploited in clinical interventions addressed to parents of children with ADHD. Overall, the identification of caregivers' strengths and resources could help practitioners to better support children with ADHD and their families.

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“…Rodzice, staj¹c w obliczu specjalnych potrzeb rozwojowych dziecka, podejmuj¹ niestandardowe role oraz zadania, które nadaj¹ ich rodzicielstwu szczególny wymiar, a w toku ich realizacji rozwijaj¹ nowe kompetencje osobowooeciowe i spo³eczne, b¹dŸ wzmacniaj¹ posiadane. Rodzice dzieci z niepe³nospraw-nooeci¹ relacjonuj¹, ¿e w toku rozwoju czy transformacji zyskuj¹ m¹drooeae, si³ê, satysfakcjê, doznaj¹ osobistej i zawodowej integracji, rozwijaj¹ zdolnooeae samorefleksji, w tym w odniesieniu do poczynañ rodzicielskich, oraz poczucie kontroli [Hornby 1992;Crown 2009;Lee, Park, Recchia 2015;Pryce, Tweed, Hilton, Priest 2015;Mitchell, Lashewicz 2016]. Mówi¹ o wzmocnieniu wiêzi spo³ecznych (rodzinnych i ma³¿eñskich), budowaniu nowych satysfakcjonuj¹cych relacji [Stainton, Besser, 2008].…”

Section: Wprowadzenieunclassified

“…Rodzice dokonuj¹ przeformu³owania przekonañ do-tycz¹cych siebie (w tym jako rodziców) oraz innych ludzi; zaznacza siê to równie¿ w odniesieniu do przekonañ na temat istoty niepe³nosprawnooeci jako ogólnoludzkiego zjawiska [Green 2007;Park, Chung 2015]. Postrzeganie niepe³nosprawnooeci w kategoriach wielowymiarowych pozwala im lepiej rozumieae potrzeby dziecka, oewiadomie na nie odpowiadaae oraz oceniaae je w kontekoecie jego indywidualnych mo¿liwooeci [Patric-Ott, Ladd 2010;Lee, Park, Recchia 2015]. W procesie transformacji rodziców zaznacza siê d¹¿enie do nadawania sensu w³asnym dooewiadczeniom ¿ycia z niepe³nosprawnooeci¹ [Scorgie, Wilgosh, Sobsey 2004;Pryce, Tweed, Hilton, Priest 2015;Takataya, Yamazaki, Mizuno 2016].…”

Section: Wprowadzenieunclassified

Pozytywne zmiany w percepcji matek dzieci z niepełnosprawnością - struktura i uwarunkowania

2018

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Pozytywne zmiany w percepcji matek dzieci z niepe³nosprawnooeci¹-struktura i uwarunkowania W artykule przedstawiono wyniki badañ w³asnych pooewiêconych wzrostowi potraumatycznemu matek dzieci z niepe³nosprawnooeci¹. W toku analiz okreoelono strukturê tego wzrostu w jego podstawowych obszarach, jak zmiany w percepcji siebie, relacjach z innymi, docenianiu ¿ycia i w sferze duchowej. Zweryfikowano ponadto zale¿nooeci miêdzy wzrostem (w zakresie ogólnym oraz obszarach szczegó³owych) a zmienn¹ zaanga¿owania w proces osobistego wzrastania, obej-muj¹c¹ komponenty w postaci pewnooeci siebie w dokonywaniu zmian, planowanie i realizowanie celów, d¹¿enie do równowagi ¿yciowej, poszukiwanie nowych mo¿liwooeci. Analizuj¹c charakter relacji miêdzy wzrostem a jego inicjowaniem (zaanga¿owaniem) poddano weryfikacji udzia³ zmiennych moderuj¹cych-nadziei podstawowej oraz poczucia w³asnej skutecznooeci. Badania zrealizowano z udzia³em 102 matek dzieci z niepe³nosprawnooeci¹ intelektualn¹, zaburzeniami ze spektrum autyzmu 1 oraz z niepe³nosprawnooeci¹ ruchow¹. Wykorzystano nastêpuj¹ce narzêdzia: The Post-traumatic Growth Inventory, Kwestionariusz Nadziei Podstawowej BHI-12, Skalê Uogólnionej W³asnej Skutecznooeci Skalê Zaanga¿owania w Proces Osobistego Wzrastania. Wykazano istotne dodatnie powi¹zania zmiennej wzrostu w jego wymiarze ogólnym oraz niektórych obszarach z wybranymi wskaŸnikami zaanga¿owania, ponadto predykcyjny udzia³ niektórych wskaŸników zaanga¿owania w wyznaczaniu procesu wzrostu. Potwierdzono mode-ruj¹c¹ rolê nadziei podstawowej oraz poczucia w³asnej skutecznooeci w ustalaniu relacji miêdzy zaanga¿owaniem w proces osobistego wzrastania a pozytywnymi zmianami u matek dzieci z nie-pe³nosprawnooeci¹. S³owa kluczowe: wzrost potraumatyczny, matki dzieci z niepe³nosprawnooeci¹, zaanga¿owanie w proces wzrastania/ inicjowanie wzrostu, nadzieja podstawowa, poczucie w³asnej skutecznooeci Positive changes in perception of mothers of children with disability-structure and determinants The article presents the results of own research on posttraumatic growth of mothers of children with disabilities. In the analyzes, the structure of this growth was defined in its basic areas, such as changes in self-perception, relationships with others, appreciation of life and the spiritual changes. Also checked the relationship between growth (in the general and specific areas) and the involvement in the growth process, including confidence in making changes, planning and 1 Termin stosowany zgodnie z obowi¹zuj¹cymi ustaleniami APA (DSM-5, 2013). realizing goals, striving for life balance, searching for new opportunities. Analyzing the character of the relationship between growth and growth initiative (involvement), the moderating variables-basic hope and self-efficacy were examined. 102 mothers of children with intellectual disability, autism spectrum disorders and with mobility impairment participated in the research. The following tools were used: The Post-traumatic Growth Inventory, Kwestionariusz Nadziei Podstawowej BHI-12, Skala Uogólnione...

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Embracing Each Other and Growing Together: Redefining the Meaning of Caregiving a Child with Disabilities

Cited by 35 publications

References 45 publications

Stress and perceived stigma among parents of children with epilepsy

Stress and perceived stigma among parents of children with epilepsy

Resilience as a moderator between Objective and Subjective Burden among parents of children with ADHD

Pozytywne zmiany w percepcji matek dzieci z niepełnosprawnością - struktura i uwarunkowania

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