Perceived well-being of parents of adults with intellectual disabilities: emotional resources and coping strategies

Author/s Donatella Scarzello
Publishing Year 2015 Issue 2015/2 Language Italian
Pages 21 P. 26-46 File size 101 KB
DOI 10.3280/PDS2015-002003
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Increasing numbers of adults with an intellectual disability are being cared for at home by ageing parents, but the data about the quality of life of caregivers of adult offspring are still poor. The aims of this study is identifying risk and protective factors that affect the caregivers’ quality of life, highlighting the differences between mother and father in coping processes and adaptation, with the analysis of the level of perceived well-being, emotional self-efficacy, social support and coping strategies and the mutual relationships among these variables. The study examined 32 married couples (with mean age of 67 years), parents of adults with intellectual disabilities; to the subjects were administered the following self report questionnaires: Satisfaction with Life Scale; Coping Inventory for Stressful Situation; Multidimensional Scale of Perceived Social Support; Self-efficacy Scale in Managing Negative Emotions; Self-efficacy Scale in Expression of Positive Emotions. The data indicate that fathers report a higher level of well-being than mothers; for both parents the level of well-being is positively associated with social support and negatively with age and emotion-focused coping and, only for fathers, also with avoidance-coping. Self-efficacy seems to play slightly different roles in the couple.

Keywords: Caregivers’ well-being, social support, self efficacy, coping strategies

  1. Antonucci T.C. (1990). Social support and social relationships. In: Binstock R.H. and George L.H., editors, Handbook of aging and the social sciences. San Diego, CA: Academic Press, pp. 205-226.
  2. American Psychiatric Association (2013). DSM 5. American Psychiatric Association.
  3. Bandura A. (1995). Self efficacy in changing societies. Cambridge: Cambridge University Press (trad. it. Il senso di autoefficacia. Trento: Erickson, 1997). Bandura A. (1997). Self efficacy: the exercise of control. New York: Freeman (trad it. Autoefficacia: teoria e applicazioni. Trento: Erickson, 2000).
  4. Ben-Zur H., Duvdevany I. and Lury L. (2005) Associations of social support and hardiness with mental health among mothers of adult children with intellectual disability. Journal of Intellectual Disability Research, 49: 54-62. DOI: 10.1111/j.1365-2788.2005.00662.x
  5. Billings A.G. and Moos R.H. (1981). The role of coping responses and social resources in attenuating the impact of stressful life events. Journal of behaviour Medicine, 4: 139-157. DOI: 10.1007/BF00844267
  6. Block J. and Block J.H. (1980). The role of ego-control and ego resilience in the organization of behavior. In Collins W.A., editor, Minnesota symposium of child psychology, vol. 13. Hillsdale, NJ: Erlbaum, pp. 39-101.
  7. Burton-Smith R., McVilly K.R, Yazbeck M., Parmenter T.R., Tsutsui T.J. (2009). Service and Support Needs of Australian Carers Supporting a Family Member with Disability at Home. Journal of Intellectual & Developmental Disability, 34 (3): 239-47. DOI: 10.1080/13668250903103668
  8. Canty-Mitchell J. and Zimet G.D. (2000): Psychometric properties of the Multidimensional Scale of Perceived Social Support in urban adolescents. American Journal of Community Psychology, 28(3): 391-400. DOI: 10.1023/A:1005109522457
  9. Capanna C. and Steca P. (2002). Ego-resiliency e prosocialità: due indicatori di adattamento in adolescenza [Ego-resiliency and prosociality: two indicators of adaptation during adolescence]. Atti del XVI Congresso Nazionale AIP Sezione di Psicologia dello Sviluppo, 15-17 settembre 2002, Rimini-Bellaria, pp. 137-140.
  10. Caprara G.V. e Gerbino M. (2001). Autoefficacia emotiva: la capacità di regolare l’affettività negativa e di esprimere quella positiva [Emotional self-efficacy: the ability to regulate negative affect and express positive affect]. In: Caprara G.V., a cura di, La valutazione dell’autoefficacia. Interventi e contesti culturali [The evaluation of self efficacy. Interventions and cultural context]. Trento: Erickson, pp. 35-61.
  11. Caprara G.V., a cura di (2001). La valutazione dell’autoefficacia. Interventi e contesti culturali [The evaluation of self efficacy. Interventions and cultural context]. Trento: Erickson.
  12. Chen S.C., Ryan-Henry S., Heller T., and Chen E.H. (2001). Health status of mothers of adults with intellectual disability. Journal of Intellectual Disability Research, 45(5): 439-449. DOI: 10.1046/j.1365-2788.2001.00352.x
  13. Chou Y.C., Pu C.Y., Lee Y.C., Lin L.C. and Kroger T. (2009). Effect of perceived stigmatization on the quality of life among ageing female family carers: A comparison of carers of adults with intellectual disability and carers of adults with mental illness. Journal of Intellectual Disability Research, 53: 654-664. DOI: 10.1111/j.1365-2788.2009.01173.x
  14. Clara I.P., Cox B.J., Enns M.W., Murray L.T. and Torgrudc L.J. (2003). Confirmatory factor analysis of the multidimensional perceived social support in clinically distressed and students samples. Journal of Personality Assessment, 81(3): 265-270. DOI: 10.1207/S15327752JPA8103_09
  15. Diener E. and Suh E. (1997). Measuring quality of life: Economic, social, and subjective indicators. Social Indicators Research, 40: 189-216. DOI: 10.1023/A:100685951175
  16. Diener E., Emmons R.A., Larsen R.J. and Griffin S. (1985). The Satisfaction with Life Scale. Journal of Personality Assessment, 49 (1): 71-75. DOI: 10.1207/s15327752jpa4901_13
  17. Di Fabio A. e Busoni L. (2009). Proprietà psicometriche della versione italiana della Satisfaction With Life Scale (SWLS) con studenti universitari [Psychometric properties of an Italian version of the Satisfaction With Life Scale (SWLS) with college students]. Counseling. Giornale Italiano di Ricerca e Applicazioni, 2: 201-212.
  18. Dyson L.L. (1997). Fathers and mothers of school-age children with developmental disabilities: parental stress, family functioning, and social support. American Journal on Mental Retardation, 102 (3): 267-279. DOI: 10.1352/0895-8017(1997)102<0267:FAMOSC>2.0.CO;2
  19. Endler N.S. and Parker J.D.A. (1990a), Multidimensional assessment of coping: A critical evaluation. Journal of Personality and Social Psychology, 58 (5): 844-854. DOI: 10.1037/0022-3514.58.5.844
  20. Endler N.S. and Parker J.D.A. (1990b). Coping inventory for stressful situations (CISS): Manual. Toronto: Multi-Health System.
  21. Essex E.L., Seltzer M.M. and Krauss M.W. (1999). Differences in coping effectiveness and well-being among ageing mothers and fathers of adults with mental retardation. American Journal on Mental Retardation, 104 (6): 545-563. DOI: 10.1352/0895-8017(1999)104<0545:DICEAW>2.0.CO;2
  22. Farber B. (1959). Effects of a severely mentally retarded child on family integration. Monographs of the Society for Research in Child Development, 24 (71): 1-112. DOI: 10.2307/1165597
  23. Folkman S. and Lazarus R.S. (1980). An analysis of coping in a middle-aged community sample. Journal of Health and Social Behaviour, 21: 219-230. DOI: 10.2307/2136617
  24. Glidden L.M., Billings F.J. and Jobe B.M. (2006). Personality, coping style and well-being of parents rearing children with developmental disabilities. Journal of Intellectual Disability Research, 50: 949-962. DOI: 10.1111/j.1365-2788.2006.00929.x
  25. Grant G. (1986). Older carers, interdependence, and the care of mentally handicapped adults. Aging and Society, 6: 333-351. DOI: 10.1017/S0144686X0000599
  26. Grant G. and Whittell B. (2000). Differentiated coping strategies in families with children or adults with intellectual disabilities: The relevance of gender, family composition and the life span. Journal of Applied Research in Intellectual Disabilities, 13 (4): 256-275. DOI: 10.1046/j.1468-3148.2000.00035.x
  27. Ha J.H., Hong J., Seltzer M.M. and Greenberg J.S. (2008). 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. Journal of Health and Social Behavior, 49 (3): 301-316. DOI: 10.1177/002214650804900305
  28. Hassall R., Rose J. and McDonald J. (2005). Parenting stress in mothers of children with an intellectual disability: the effects of parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research, 49: 405-18. DOI: 10.1111/j.1365-2788.2005.00673.x
  29. Hastings R.P. and Brown A. (2002). Behavior Problems of Children with Autism, Parental Self-Efficacy, and Mental Health. American Journal on Mental Retardation, 107: 222-32. DOI: 10.1352/0895-8017(2002)107<0222:BPOCWA>2.0.CO;2
  30. Heller T., Hsieh K. and Rowitz L. (1997). Maternal and paternal caregiving of persons with mental retardation across the lifespan. Family Relations, 46: 407-415. DOI: 10.2307/585100
  31. Hill C. and Rose J. (2009). Parenting stress in mothers of adults with an intellectual disability: parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research, 53 (12): 969-980. DOI: 10.1111/j.1365-2788.2009.01207.x
  32. Hirst M. (1985). Dependency and family care of young adults with disabilities. Child Care, Health, and Development, 11: 241-257. DOI: 10.1111/j.1365-2214.1985.tb00467.x
  33. Hong J., Seltzer M. and Krauss W. (2001). Change in social support and psychological wellbeing. A longitudinal study of ageing mothers of adults with mental retardation. Family Relations, 50 (2): 154-163. DOI: 10.1111/j.1741-3729.2001.00154.x
  34. Hoyert D.L. and Seltzer M.M. (1992). Factors related to the well-being and life activities of family caregivers. Family Relations, 41 (1): 74-81. DOI: 10.2307/585397
  35. Kim H.W., Greenberg J.S., Seltzer M.M. and Krauss M.W. (2003). The role of coping in maintaining the psychological well-being of mothers of adults with intellectual disability and mental illness. Journal of Intellectual Disability Research, 47 (4-5): 313-327. DOI: 10.1046/j.1365-2788.2003.00493.x
  36. Lazarus R.S. and Folkman S. (1984). Stress, appraisal and coping. New York: Springer.
  37. Llewellyn G., McConnell D., Gething L., Cant R., Kendig H. (2010). Health status and coping strategies among older parent-carers of adults with intellectual disabilities in an Australian sample. Research in Developmental Disabilities, 31: 1176-1186. DOI: 10.1016/j.ridd.2010.08.003
  38. Lutzky S.M. and Knight B.G. (1994). Explaining gender differences in caregiver distress: The roles of emotional attentiveness and coping styles. Psychology and Aging, 9: 513-519. DOI: 10.1037/0882-7974.9.4.513
  39. Majani G. (1999). Introduzione alla psicologia della salute [Introduction to health psychology]. Trento: Erickson.
  40. McCubbin H.I., Sussman M. and Patterson J.J. (1983). Advances and developments in family stress theory and research. Springfield: C. Thomas Publisher.
  41. Pavot W. and Diener E. (1993). Review of the Satisfaction With life scale. Psichological assessment, 5: 164-172. DOI: 10.1037/1040-3590.5.2.164
  42. Pinquart M. and Sörensen S. (2006). Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 61(1): 33-45. DOI: 10.1093/geronb/61.1.P33
  43. Prezza M. e Principato M.C. (2002). La rete sociale e il sostegno sociale [Social network and social support]. In: Prezza M. e Santinello M., a cura di, Conoscere la comunità. L’analisi degli ambienti di vita quotidiana [Knowing the community. The analysis of the environments of daily life]. Bologna: Il Mulino, pp. 193-234.
  44. Pruchno R.A. (2003). Enmeshed lives: adult children with developmental disabilities and their aging mothers. Psychology and Aging, 18: 851-7. DOI: 10.1037/0882-7974.18.4.851
  45. Ptacek J.T., Smith R.E. and Zanas J. (1992). Gender, appraisal, and coping: A longitudinal analysis. Journal of Personality, 60: 747-770. DOI: 10.1111/j.1467-6494.1992.tb00272.x
  46. Ramaswamy V., Aroian K.J., Templin T. (2009). Adaptation and Psychometric Evaluation of the Multidimensional Scale of Perceived Social Support for Arab American Adolescents. American Journal of Community Psychology, 43(1/2): 49-56. DOI: 10.1007/s10464-008-9220-x
  47. Rutter M. (1985). Resilience in the face of adversity: Protective factors and resistance to psychiatric disorder. British Journal of Psychiatry, 147: 598-611. DOI: 10.1192/bjp.147.6.598
  48. Schalock R.L. (2004). The concept of quality of life: what we know and do not know. Journal of Intellectual Disability Research, 48 (3): 203-216. DOI: 10.1111/j.1365-2788.2003.00558.x
  49. Sirigatti S.e Stefanile C. (2009). CISS - Adattamento Italiano [CISS: Italian adaptation]. Firenze: Giunti O.S. Organizzazioni Speciali.
  50. Summers J.A., Behr S.K. and Turnbull A.P. (1989). Positive adaptation and coping strengths of families who have children with disabilities. In: Singer G.H.S and Irvin L.K., editors, Support for Caregiving Families: Enabling Positive Adaptation to Disability. London: Paul H. Brookes Publishing, pp. 27-40.
  51. Taylor S.E. (1983). Adjustment to threatening events, a theory of cognitive adaptation. American Psychologist, 38 (11): 1161-1173. DOI: 10.1037/0003-066X.38.11.1161
  52. Tesio E., a cura di (2000). L’uovo fuori dal cesto. Dinamiche affettive con i disabili e le loro famiglie [The egg out of the basket: affective dynamics with disabled and families]. Torino: Utet.
  53. Turnbull A.P., Summers J.A. and Brotherson M. J. (1986), Family life cycle: theoretical and empirical implications and future directions for families with mentally retarded members.
  54. In Gallagher J.J. and Vietze P.M., editors, Families and handicapped persons: research, programs and policy issues. Baltimore: P. H. Brookes, pp. 25-44.
  55. Weeks L.E., Nilsson T., Bryanton O. and Kozma A. (2009). Current and future concerns of older parents of sons and daughters with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 6 (3): 180-188. DOI: 10.1111/j.1741-1130.2009.00222.x
  56. Yoong A. and Koritsas S. (2012). The impact of caring for adults with intellectual disability on the quality of life of parents. Journal of Intellectual Disability Research, 56 (6): 609-619. DOI: 10.1111/j.1365-2788.2011.01501.x
  57. Zani B. e Cicognani E. (1999). Le vie del benessere. Eventi di vita e strategie di coping [The paths of well-being. Life events and coping strategies]. Roma: Carocci.
  58. Zimet G.L., Dahlem N.W., Zimet S.G. and Farley G.K. (1988). The Multidimensional Scale of Perceived Social Support. Journal of Personality Assessment, 52 (1): 30-41. DOI: 10.1207/s15327752jpa5201_2

Donatella Scarzello, Benessere percepito in genitori di soggetti adulti con disabilità intellettive: risorse emotive e strategie di coping in "PSICOLOGIA DELLA SALUTE" 2/2015, pp 26-46, DOI: 10.3280/PDS2015-002003