Parent and family impact of raising a child with perinatal stroke

BMC Pediatrics

Adam Kirton¹  Richard H Dyck²  Brian L Brooks¹  Taryn B Bemister³ 

[1] Alberta Children’s Hospital Research Institute, Heritage Medical Research Building, Room 293, 3330 Hospital Drive NW, Calgary, AB T2N 4N1, Canada;Department of Psychology, University of Calgary, 2500 University Drive NW, Calgary, AB T2N 1N4, Canada;Calgary Pediatric Stroke Program, Room C1-320, Alberta Children’s Hospital, 2888 Shaganappi Trail NW, Calgary, AB T3B 6A8, Canada

关键词: Gender differences;    Pediatric disabilities;    Pediatric neurological conditions;    Family impact;    Parent impact;    Caregivers;    Perinatal stroke;   

Others  :  1138540
DOI  :  10.1186/1471-2431-14-182

 received in 2014-01-15, accepted in 2014-07-09,  发布年份 2014

【 摘 要 】

Background

Perinatal stroke is a leading cause of early brain injury, cerebral palsy, and lifelong neurological morbidity. No study to date has examined the impact of raising a child with perinatal stroke on parents and families. However, a large breadth of research suggests that parents, especially mothers, may be at increased risk for psychological concerns. The primary aim of this study was to examine the impact of raising a child with perinatal stroke on mothers’ wellbeing. A secondary aim was to examine how caring for a child with perinatal stroke differentially affects mothers and fathers.

Methods

In Study I, a matched case-control design was used to compare the wellbeing of mothers of children with perinatal stroke and mothers of children with typical development. In Study II, a matched case-control design was used to compare mother-father dyads. Participants completed validated measures of anxiety and depression, stress, quality of life and family functioning, marital satisfaction, and marital distress. Parents of children with perinatal stroke also completed a recently validated measure of the psychosocial impact of perinatal stroke including guilt and blame outcomes. Disease severity was categorized by parents, validated by the Pediatric Stroke Outcome Measure (PSOM), and compared across the above outcomes in Study I.

Results

A total of 112 mothers participated in Study I (n = 56 per group; mean child age = 7.42 years), and 56 parents participated in Study II (n = 28 per group; mean child age = 8.25 years). In Study I, parent assessment of disease severity was correlated with PSOM scores (γ = 0.75, p < .001) and associated with parent outcomes. Mothers of children with mild conditions were indistinguishable from controls on the outcome measures. However, mothers of children with moderate/severe conditions had poorer outcomes on measures of depression, marital satisfaction, quality of life, and family functioning. In Study II, mothers and fathers had similar outcomes except mothers demonstrated a greater burden of guilt and higher levels of anxiety.

Conclusions

Although most mothers of children with perinatal stroke adapt well, mothers of children with moderate/severe conditions appear to be at higher risk for psychological concerns.

【 授权许可】

   
2014 Bemister et al.; licensee BioMed Central Ltd.

【 参考文献 】

• [1]Raju TNK, Nelson KB, Ferriero D, Lynch JK: Ischemic perinatal stroke: summary of a workshop sponsored by the National Institute of Child Health and Human Development and the National Institute of Neurological Disorders and Stroke. Pediatrics 2007, 120(3):609-616.
• [2]Golomb MR: Outcomes of perinatal arterial ischemic stroke and cerebral sinovenous thrombosis. Semin Fetal Neonatal Med 2009, 14(5):318-322.
• [3]Pousada M, Guillamón N, Hernández-Encuentra E, Muñoz E, Redolar D, Boixadós M, Gómez-Zúñiga B: Impact of caring for a child with cerebral palsy on the quality of life of parents: a systematic review of the literature. J Dev Phys Disabil 2013, 25(5):545-577.
• [4]Guyard A, Fauconnier J, Mermet MA, Cans C: Impact on parents of cerebral palsy in children: a literature review. Arch Pediatr 2011, 18(2):204-214.
• [5]Duffy LV: Parental coping and childhood epilepsy: the need for future research. J Neurosci Nurs 2011, 43(1):29-35.
• [6]Ferro MA, Speechley KN: Depressive symptoms among mothers of children with epilepsy: A review of prevalence, associated factors, and impact on children. Epilepsia 2009, 50(11):2344-2354.
• [7]Singer GHS: Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. Am J Ment Retard 2006, 111(3):155-169.
• [8]Heiman T: Parents of children with disabilities: resilience, coping, and future expectations. J Dev Phys Disabil 2002, 14(2):159-171.
• [9]Terra VC, Cysneiros RM, Schwartzman JS, Teixeira MCTV, Arida RM, Cavalheiro EA, Scorza FA, de Albuquerque M: Mothers of children with cerebral palsy with or without epilepsy: a quality of life perspective. Disabil Rehabil 2011, 33(5):384-388.
• [10]Mugno D, Ruta L, D'Arrigo VG, Mazzone L: Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health Qual Life Outcomes 2007, 5(22):15.
• [11]Magill-Evans J, Darrah J, Pain K, Adkins R, Kratochvil M: Are families with adolescents and young adults with cerebral palsy the same as other families? Dev Med Child Neurol 2001, 43(7):466-472.
• [12]Pelchat D, Lefebvre H, Levert M: Gender differences and simililarities in the experience of parenting a child with a health problem: current state of knowledge. J Child Health Care 2007, 11(2):112-131.
• [13]Ha J, Hong J, Seltzer MM, Greenberg JS: Age and gender differences in the well-being of midlife and aging parents with children with mental health or developmental problems: Report of a national study. J Health Soc Behav 2008, 49(3):301-316.
• [14]Pinquart M, Sörensen S: Gender differences in caregiver stressors, social resources, and health: an updated meta-analysis. J Gerontol B Psychol Sci Soc Sci 2006, 61(1):33-45.
• [15]Matud MP: Gender differences in stress and coping styles. Pers Indiv Differ 2004, 37(7):1401-1415.
• [16]Risdal D, Singer GHS: Marital adjustment in parents of children with disabilities: a historical review and meta-analysis. Res Pract Pers Sev D 2004, 29(2):95-103.
• [17]Sobsey D: Marital stability and marital satisfaction in families of children with disabilities: chicken or egg? Dev Disabil Bull 2004, 32(1):62-83.
• [18]Florian V, Findler L: Mental health and marital adaptation among mothers of children with cerebral palsy. Am J Orthopsychiatry 2001, 71(3):358-367.
• [19]Parker JA, Mandleco B, Olsen Roper S, Freeborn D, Dyches TT: Religiosity, spirituality, and marital relationships of parents raising a typically developing child or a child with a disability. J Fam Nurs 2011, 17(1):82-104.
• [20]Havens CA: Becoming a resilient family: child disability and the family system. Access Today 2005., 17(5)
• [21]Cuzzocrea F, Larcan R, Westh F: Family and parental functioning in parents of disabled children. Nord Psychol 2013, 65(3):271-287.
• [22]Lach LM, Kohen DE, Garner RE, Brehaut JC, Miller AR, Klassen AF, Rosenbaum PL: The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders. Disabil Rehabil 2009, 31(9):741-752.
• [23]Povee K, Roberts L, Bourke J, Leonard H: Family functioning in families with a child with Down syndrome: a mixed methods approach. J Intellect Disabil Res 2012, 56(10):961-973.
• [24]Coffey JS: Parenting a child with chronic illness: a metasynthesis. Pediatr Nurs 2006, 32(1):51-60.
• [25]Raina P, O'Donnell M, Schwellnus H, Rosenbaum P, King G, Brehaut J, Russell D, Swinton M, King S, Wong M, Walter SD, Wood E: Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatr 2004., 4(1)
• [26]Tzoufi M, Mantas C, Pappa S, Kateri M, Hyphantis T, Pavlou M, Mavreas V, Siamopoulou-Mavridou A: The impact of childhood chronic neurological diseases on Greek families. Child Care Health Dev 2005, 31(1):109-115.
• [27]Eker L, Tüzün EH: An evaluation of quality of life of mothers of children with cerebral palsy. Disabil Rehabil 2004, 26(23):1354-1359.
• [28]Bemister TB, Brooks B, Kirton A: Development, reliability, and validity of the APSP Parental Outcome Measure. Pediatr Neurol 2014, 51(1):43-52.
• [29]King S, Teplicky R, King G, Rosenbaum P: Family-centered service for children with cerebral palsy and their families: a review of the literature. Semin Pediatr Neurol 2004, 11(1):78-86.
• [30]Kirton A, deVeber G: Advances in perinatal ischemic stroke. Pediatr Neurol 2009, 40(3):205-214.
• [31]Zigmond AS, Snaith RP: The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand 1983, 67(6):361-370.
• [32]Bjelland I, Dahl AA, Haug TT, Neckelmann D: The validity of the Hospital Anxiety and Depression Scale: an updated literature review. J Psychosom Res 2002, 52(2):69-77.
• [33]Cohen S, Kamarck T, Mermelstein R: A global measure of perceived stress. J Health Soc Behav 1983, 24(4):385-396.
• [34]Lessenberry BM, Rehfeldt RA: Evaluating stress levels of parents of children with disabilities. Except Child 2004, 70(2):231-244.
• [35]Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P: The PedsQL Family Impact Module: preliminary reliability and validity. Health Qual Life Outcomes 2004, 2:55.
• [36]Panepinto JA, Hoffmann RG, Pajewski NM: A psychometric evaluation of the PedsQL Family Impact Module in parents of children with sickle cell disease. Health Qual Life Outcomes 2009, 7(1):32-38.
• [37]Spanier GB: Measuring dyadic adjustment: new scales for assessing the quality of marriage and similar dyads. J Marriage Fam 1976, 38(1):15-28.
• [38]Graham JM, Liu YJ, Jeziorski JL: The Dyadic Adjustment Scale: a reliability generalization meta-analysis. J Marriage Fam 2006, 68(3):701-717.
• [39]Schumm WR: Characteristics of the Kansas Marital Satisfaction Scale in a sample of 79 married couples. Psychol Rep 1983, 53(1):583-588.
• [40]Schumm WR, Paff-Bergen LA, Hatch RC, Obiorah FC, Copeland JM, Meens LD, Bugaighis MA: Concurrent and discriminant validity of the Kansas Marital Satisfaction Scale. J Marriage Fam 1986, 48(2):381-387.
• [41]Sabatelli RM: Measurement issues in marital research: a review and critique of contemporary survey instruments. J Marriage Fam 1988, 50(4):891-915.
• [42]de Veber GA, MacGregor D, Curtis R, Mayank S: Neurologic outcome in survivors of childhood arterial ischemic stroke and sinovenous thrombosis. J Child Neurol 2000, 15(5):316-324.
• [43]Bailey DB, Golden RN, Roberts J, Ford A: Maternal depression and developmental disability: research critique. Ment Retard Dev Disabil Res Rev 2007, 13(4):321-329.
• [44]Swallow V, Macfadyen A, Santacroce SJ, Lambert H: Fathers’ contributions to the management of their child’s long-term medical condition: a narrative review of the literature . Health Expect 2012, 15(2):157-175.
• [45]Statistics Canada: Table 111-0009 Median total income, by family type, by province and territory [table]. CANSIM [database]. Last updated October 2013. http://www.statcan.gc.ca/tables-tableaux/sum-som/l01/cst01/famil108a-eng.htm webcite (accessed December 1, 2013)
• [46]Rentinck ICM, Ketelaar M, Schuengel C, Stolk J, Lindeman E, Jongmans MJ, Gorter JW: Short-term changes in parents’ resolution regarding their young child’s diagnosis of cerebral palsy. Child Care Health Dev 2010, 36(5):703-708.
• [47]Whittingham K, Wee D, Sanders MR, Boyd R: Sorrow, coping and resiliency: parents of children with cerebral palsy share their experiences. Disabil Rehabil 2013, 35(17):1447-1452.
• [48]Canary HE: Creating supportive connections: A decade of research on support for families of children with disabilities. Health Commun 2008, 23(5):413-426.
• [49]Carona C, Crespo C, Canavarro M: Similarities amid the difference: Caregiving burden and adaptation outcomes in dyads of parents and their children with and without cerebral palsy. Res Dev Disabil 2013, 34(3):882-893.
• [50]Cohen J: Statistical Power Analysis for the Behavioral Sciences. New York: Routledge; 1988.
• [51]Cohen J: A power primer. Psychol Bull 1992, 112(1):155.