Ambiguous Loss and Coping Strategies in Couples Raising a Child With Down Syndrome: A Qualitative Directed Content Analysis Study A Qualitative Directed Content Analysis Study
Main Article Content
Gail E. Bentley, Dr.
Shera C. Thomas-Jackson, Dr.
Briana S. Nelson Goff
http://orcid.org/0000-0001-7199-7109
Nicole Piland, Dr.
http://orcid.org/0000-0001-7199-7109
Nicole Piland, Dr.
Abstract
Despite years of research about developmental diversity, relatively little is known about the experience of couples raising a child with Down syndrome. Previous research has identified that Ambiguous Loss Theory can be helpful to understand the parents’ process of navigating the uncertainty, challenges, stressors, and demands of raising a child diagnosed with a neurodevelopmental disorder. Building on previous research and the framework of ambiguous loss, this study sought to provide insight into the lived experience of couples raising a child diagnosed with Down syndrome. Using a qualitative directed content analysis of the paired responses to open-ended questions from 16 couples, the current study provides insight into the couple’s experience of ambiguous loss and greater understanding about their coping strategies. Results indicated a process of dealing with ambiguous loss by most couples. Coping strategies reported by the couples included medical and educational advocacy, deepening and building connections, and gaining new perspectives on raising a child with Down syndrome. Implications for policy and practice are also included, based on the coping strategies, skills, and resources available to parents of children with Down syndrome or other neurodevelopmental disorders.
Keywords:
Down syndrome, ambiguous loss, couples coping, qualitative directed content analysis
Article Details
How to Cite
BENTLEY, Gail E. et al.
Ambiguous Loss and Coping Strategies in Couples Raising a Child With Down Syndrome: A Qualitative Directed Content Analysis Study.
Medical Research Archives, [S.l.], v. 10, n. 11, nov. 2022.
ISSN 2375-1924.
Available at: <https://esmed.org/MRA/mra/article/view/3267>. Date accessed: 22 dec. 2024.
doi: https://doi.org/10.18103/mra.v10i11.3267.
Section
Research Articles
The Medical Research Archives grants authors the right to publish and reproduce the unrevised contribution in whole or in part at any time and in any form for any scholarly non-commercial purpose with the condition that all publications of the contribution include a full citation to the journal as published by the Medical Research Archives.
References
1. Boss P. Ambiguous Loss: Learning to Live with Unresolved Grief. Harvard University Press; 1999.
2. Boss P. Loss, Trauma, and Resilience: Therapeutic Work with Ambiguous Loss. W. W. Norton & Company; 2006.
3. Boss P. Ambiguous loss theory: Challenges for scholars and practitioners. Family Relations. 2007;56(2):105-110.
4. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-1288. doi:10.1177/1049732305276687
5. Jeter K, Turns B. Grieving the child that never was: Treatment of ambiguous loss in parents of children with Down syndrome. Australian and New Zealand Journal of Family Therapy. 2022;43(2):243-256. doi:10.1002/anzf.1488
6. Brobst JB, Clopton JR, Hendrick SS. Parenting children with autism spectrum disorders: The couple’s relationship. Focus Autism Other Dev Disabl. 2009;24(1):38-49. doi:10.1177/1088357608323699
7. DePape AM, Lindsay S. Parents’ experiences of caring for a child with autism spectrum disorder. Qualitative Health Research. Published online 2015. doi:https://doi.org/10.1177/1049732314552455
8. Hayes SA, Watson SL. The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. J Autism Dev Disord. 2013;43(3):629-642. doi:10.1007/s10803-012-1604-y
9. Ludlow A, Skelly C, Rohleder P. Challenges faced by parents of children diagnosed with autism spectrum disorder. J Health Psychol. 2012;17(5):702-711. doi:10.1177/1359105311422955
10. Mackintosh VH, Goin-Kochel RP, Myers BJ. “What do you like/dislike about the treatments you’re currently using?”: A qualitative study of parents of children with autism spectrum disorders. Focus Autism Other Dev Disabl. 2012;27(1):51-60. doi:10.1177/1088357611423542
11. Marquis S, Hayes MV, McGrail K. Factors affecting the health of caregivers of children who have an intellectual/developmental disability. Journal of Policy and Practice in Intellectual Disabilities. 2019;16(3):201-216. doi:10.1111/jppi.12283
12. Resch JA, Mireles G, Benz MR, Grenwelge C, Peterson R, Zhang D. Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities. Rehabilitation Psychology. 2010;55:139-150. doi:10.1037/a0019473
13. Nelson Goff BS, Springer N, Foote LC, Frantz C, Peak M, Tracy C, Veh T, Bentley GE, Cross KA. Receiving the initial Down syndrome diagnosis: A comparison of prenatal and postnatal parent group experiences. Intellectual and Developmental Disabilities. 2013;51(6):446-457. doi:10.1352/1934-9556-51.6.446
14. Bentley GE, Brown MD, Whiting JB. Perspectives from fathers: Recognizing their strengths and contributions beyond breadwinning. In: Nelson Goff BS, Piland Springer N, eds. Intellectual and Developmental Disabilities: A Roadmap for Families and Professionals. Routledge/Taylor & Francis; 2018:90-103.
15. Cless JD, Stephenson C. Perspectives from mothers: Recognizing their strengths and contributions beyond caregiving. In: Nelson Goff BS, Piland Springer N, eds. Intellectual and Developmental Disabilities: A Roadmap for Families and Professionals. Routledge/Taylor & Francis; 2018:76-89.
16. Hastings RP. Do children with intellectual and developmental disabilities have a negative impact on other family members? The case for rejecting a negative narrative. Fifty Years of Research in Intellectual and Developmental Disabilities. 2016:165-194. doi:10.1016/bs.irrdd.2016.05.002
17. Norton M, Dyches TT, Harper JM, Roper SO, Caldarella P. Respite care, stress, uplifts, and marital quality in parents of children with Down syndrome. J Autism Dev Disord. 2016;46(12):3700-3711. doi:10.1007/s10803-016-2902-6
18. Poehlmann J, Clements M, Abbeduto L, Farsad V, Ferguson D. Family experiences associated with a child’s diagnosis of fragile X or Down syndrome: Evidence for disruption and resilience. Ment Retard. 2005;43(4):255-267. doi:10.1352/0047-6765 (2005)43[255:FEAWAC]2.0.CO;2
19. Van Riper M. Families of children with Down syndrome: Responding to “a change in plans” with resilience. Journal of Pediatric Nursing. 2007;22(2):116-128. doi:10.1016/j.pedn.2006.07.004
20. Brown M, Whiting J, Kahumoku-Fessler E, Witting AB, Jensen J. A dyadic model of stress, coping, and marital satisfaction among parents of children with autism. Family Relations. 2020;69(1):138-150. doi:10.1111/fare.12375
21. Kersh J, Hedvat TT, Hauser-Cram P, Warfield ME. The contribution of marital quality to the well-being of parents of children with developmental disabilities. Journal of Intellectual Disability Research. 2006;50(12):883-893. doi:10.1111/j.1365-2788.2006.00906.x
22. Langley E, Totsika V, Hastings RP. Parental relationship satisfaction in families of children with autism spectrum disorder (ASD): A multilevel analysis. Autism Research. 2017;10(7):1259-1268. doi:10.1002/aur.1773
23. Mitchell DB, Szczerepa A, Hauser-Cram P. Spilling over: Partner parenting stress as a predictor of family cohesion in parents of adolescents with developmental disabilities. Research in Developmental Disabilities. 2016;49-50:258-267. doi:10.1016/j.ridd.2015.12.007
24. Sim A, Cordier R, Vaz S, Parsons R, Falkmer T. Relationship satisfaction and dyadic coping in couples with a child with autism spectrum disorder. J Autism Dev Disord. 2017;47(11):3562-3573. doi:10.1007/s10803-017-3275-1
25. Lee YJ, Park HJ, Lee SY. Learning to live with ambiguity: Rethinking ambiguous loss for mothers of children with disabilities. SAGE Open. 2022;12(2):21582440221095016. doi:10.1177/21582440221095014
26. Bentley GE. The up side of Down syndrome and fathering: An exploration of hope, satisfaction, and coping. Published online 2011.
27. Bentley GE, Zvonkovic A, McCarty M, Springer N. Down Syndrome and Fathering: An Exploration of Ambiguous Loss. Fathering. 2015;13(1):1-17.
28. O’Brien M. Ambiguous loss in families of children with autism spectrum disorders. Family Relations. 2007;56(2):135-146. doi:10.1111/j.1741-3729.2007.00447.x
29. Bull MJ, Trotter T, Santoro SL, Christensen C, Grout RW. Health supervision for children and adolescents with Down syndrome. Pediatrics. 2022;149(5). doi:10.1542/peds.2022-057010
30. Farkas L, Cless JD, Cless AW, Nelson Goff BS, Bodine E, Edelman A. The ups and downs of Down syndrome: A qualitative study of positive and negative parenting experiences. Journal of Family Issues. 2019;40(4):518-539. doi:10.1177/0192513X18812192
31. Krueger K, Cless JD, Dyster M, Reves M, Steele R, Nelson Goff BS. Understanding the systems, contexts, behaviors, and strategies of parents advocating for their children with Down syndrome. Intellectual and Developmental Disabilities. 2019;57(2):146-157. doi:10.1352/1934-9556-57.2.146
32. Nelson Goff BS, Monk JK, Malone J, Staats N, Tanner A, Springer NP. Comparing parents of children with Down syndrome at different life span stages. Journal of Marriage & Family. 2016;78(4):1131-1148. doi:10.1111/jomf.12312
33. Staats N, Nelson Goff BS, Springer N, Monk JK. Parents of children with Down syndrome: A comparison of prenatal and postnatal diagnosis groups. Journal on Developmental Disabilities. 2015;21(2):83-94.
34. McCubbin HI, Olson DH, Larsen AS. F-COPES: Family crisis oriented personal evaluation scales. In: McCubbin HI, Thompson, AI, eds. Family Assessment Inventories for Research and Practice. University of Wisconsin; 1991:259-270.
35. Boss P. Boundary ambiguity: A block to cognitive coping. In: Turnbull JM, Patterson JM, Behr SK, Murphy DL, Marquis JG, Blue-Banning MJ, eds. Cognitive Coping, Families, and Disability. Paul H. Brookes Publishing; 1993:257-270.
36. Richards L, Morse JM. Readme First for a User's Guide to Qualitative Methods. SAGE Publications, Inc; 2002.
37. Kingsbury N, Scanzoni J. Structural functionalism. In: Boss P, Doherty WJ, LaRossa R, Schumm WR, Steinmetz SK, eds. Sourcebook of Family Theories and Methods: A Contextual Approach. Springer Science & Business Media; 1993:207-210.
38. Springer NP, Turns B, Masterson M. A systemic and contextual lens of disability: Family stress, ambiguous loss, and meaning making. In: Nelson Goff BS, Piland Springer N, eds. Intellectual and Developmental Disabilities: A Roadmap for Families and Professionals. Routledge/Taylor & Francis; 2018:17-31.
39. Boss P, Greenberg J. Family boundary ambiguity: A new variable in family stress theory. Family Process. 1984;23(4):535-546. doi:10.1111/j.1545-5300.1984.00535.x
40. Rolland JS. Helping Couples and Families Navigate Illness and Disability: An Integrated Approach. Guilford Press; 2018.
41. Budner S. Tolerance for ambiguity scale. Journal of Personality. 1962;30(1):29-50.
42. Ramisch JL, Piland N. Systemic approaches for children, adolescents, and families living with neurodevelopmental disorders. In: Wampler KS, McWey LM, eds. The Handbook of Systemic Family Therapy. Vol 2. John Wiley & Sons; 2020:369-396. doi:10.1002/9781119438519.ch48
43. Romney J. The lived experience of functionality in families with a child diagnosed with autism spectrum disorder: An interpretive phenomenological analysis. Published online 2022.
44. Harris DL, Winokuer HW. Living losses: Nonfinite loss, ambiguous loss, and chronic sorrow. In: Harris DL, Winokuer HW, eds. Principles and Practices of Grief Counseling, 3rd Ed. Springer Publishing; 2019:121-138.
2. Boss P. Loss, Trauma, and Resilience: Therapeutic Work with Ambiguous Loss. W. W. Norton & Company; 2006.
3. Boss P. Ambiguous loss theory: Challenges for scholars and practitioners. Family Relations. 2007;56(2):105-110.
4. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-1288. doi:10.1177/1049732305276687
5. Jeter K, Turns B. Grieving the child that never was: Treatment of ambiguous loss in parents of children with Down syndrome. Australian and New Zealand Journal of Family Therapy. 2022;43(2):243-256. doi:10.1002/anzf.1488
6. Brobst JB, Clopton JR, Hendrick SS. Parenting children with autism spectrum disorders: The couple’s relationship. Focus Autism Other Dev Disabl. 2009;24(1):38-49. doi:10.1177/1088357608323699
7. DePape AM, Lindsay S. Parents’ experiences of caring for a child with autism spectrum disorder. Qualitative Health Research. Published online 2015. doi:https://doi.org/10.1177/1049732314552455
8. Hayes SA, Watson SL. The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. J Autism Dev Disord. 2013;43(3):629-642. doi:10.1007/s10803-012-1604-y
9. Ludlow A, Skelly C, Rohleder P. Challenges faced by parents of children diagnosed with autism spectrum disorder. J Health Psychol. 2012;17(5):702-711. doi:10.1177/1359105311422955
10. Mackintosh VH, Goin-Kochel RP, Myers BJ. “What do you like/dislike about the treatments you’re currently using?”: A qualitative study of parents of children with autism spectrum disorders. Focus Autism Other Dev Disabl. 2012;27(1):51-60. doi:10.1177/1088357611423542
11. Marquis S, Hayes MV, McGrail K. Factors affecting the health of caregivers of children who have an intellectual/developmental disability. Journal of Policy and Practice in Intellectual Disabilities. 2019;16(3):201-216. doi:10.1111/jppi.12283
12. Resch JA, Mireles G, Benz MR, Grenwelge C, Peterson R, Zhang D. Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities. Rehabilitation Psychology. 2010;55:139-150. doi:10.1037/a0019473
13. Nelson Goff BS, Springer N, Foote LC, Frantz C, Peak M, Tracy C, Veh T, Bentley GE, Cross KA. Receiving the initial Down syndrome diagnosis: A comparison of prenatal and postnatal parent group experiences. Intellectual and Developmental Disabilities. 2013;51(6):446-457. doi:10.1352/1934-9556-51.6.446
14. Bentley GE, Brown MD, Whiting JB. Perspectives from fathers: Recognizing their strengths and contributions beyond breadwinning. In: Nelson Goff BS, Piland Springer N, eds. Intellectual and Developmental Disabilities: A Roadmap for Families and Professionals. Routledge/Taylor & Francis; 2018:90-103.
15. Cless JD, Stephenson C. Perspectives from mothers: Recognizing their strengths and contributions beyond caregiving. In: Nelson Goff BS, Piland Springer N, eds. Intellectual and Developmental Disabilities: A Roadmap for Families and Professionals. Routledge/Taylor & Francis; 2018:76-89.
16. Hastings RP. Do children with intellectual and developmental disabilities have a negative impact on other family members? The case for rejecting a negative narrative. Fifty Years of Research in Intellectual and Developmental Disabilities. 2016:165-194. doi:10.1016/bs.irrdd.2016.05.002
17. Norton M, Dyches TT, Harper JM, Roper SO, Caldarella P. Respite care, stress, uplifts, and marital quality in parents of children with Down syndrome. J Autism Dev Disord. 2016;46(12):3700-3711. doi:10.1007/s10803-016-2902-6
18. Poehlmann J, Clements M, Abbeduto L, Farsad V, Ferguson D. Family experiences associated with a child’s diagnosis of fragile X or Down syndrome: Evidence for disruption and resilience. Ment Retard. 2005;43(4):255-267. doi:10.1352/0047-6765 (2005)43[255:FEAWAC]2.0.CO;2
19. Van Riper M. Families of children with Down syndrome: Responding to “a change in plans” with resilience. Journal of Pediatric Nursing. 2007;22(2):116-128. doi:10.1016/j.pedn.2006.07.004
20. Brown M, Whiting J, Kahumoku-Fessler E, Witting AB, Jensen J. A dyadic model of stress, coping, and marital satisfaction among parents of children with autism. Family Relations. 2020;69(1):138-150. doi:10.1111/fare.12375
21. Kersh J, Hedvat TT, Hauser-Cram P, Warfield ME. The contribution of marital quality to the well-being of parents of children with developmental disabilities. Journal of Intellectual Disability Research. 2006;50(12):883-893. doi:10.1111/j.1365-2788.2006.00906.x
22. Langley E, Totsika V, Hastings RP. Parental relationship satisfaction in families of children with autism spectrum disorder (ASD): A multilevel analysis. Autism Research. 2017;10(7):1259-1268. doi:10.1002/aur.1773
23. Mitchell DB, Szczerepa A, Hauser-Cram P. Spilling over: Partner parenting stress as a predictor of family cohesion in parents of adolescents with developmental disabilities. Research in Developmental Disabilities. 2016;49-50:258-267. doi:10.1016/j.ridd.2015.12.007
24. Sim A, Cordier R, Vaz S, Parsons R, Falkmer T. Relationship satisfaction and dyadic coping in couples with a child with autism spectrum disorder. J Autism Dev Disord. 2017;47(11):3562-3573. doi:10.1007/s10803-017-3275-1
25. Lee YJ, Park HJ, Lee SY. Learning to live with ambiguity: Rethinking ambiguous loss for mothers of children with disabilities. SAGE Open. 2022;12(2):21582440221095016. doi:10.1177/21582440221095014
26. Bentley GE. The up side of Down syndrome and fathering: An exploration of hope, satisfaction, and coping. Published online 2011.
27. Bentley GE, Zvonkovic A, McCarty M, Springer N. Down Syndrome and Fathering: An Exploration of Ambiguous Loss. Fathering. 2015;13(1):1-17.
28. O’Brien M. Ambiguous loss in families of children with autism spectrum disorders. Family Relations. 2007;56(2):135-146. doi:10.1111/j.1741-3729.2007.00447.x
29. Bull MJ, Trotter T, Santoro SL, Christensen C, Grout RW. Health supervision for children and adolescents with Down syndrome. Pediatrics. 2022;149(5). doi:10.1542/peds.2022-057010
30. Farkas L, Cless JD, Cless AW, Nelson Goff BS, Bodine E, Edelman A. The ups and downs of Down syndrome: A qualitative study of positive and negative parenting experiences. Journal of Family Issues. 2019;40(4):518-539. doi:10.1177/0192513X18812192
31. Krueger K, Cless JD, Dyster M, Reves M, Steele R, Nelson Goff BS. Understanding the systems, contexts, behaviors, and strategies of parents advocating for their children with Down syndrome. Intellectual and Developmental Disabilities. 2019;57(2):146-157. doi:10.1352/1934-9556-57.2.146
32. Nelson Goff BS, Monk JK, Malone J, Staats N, Tanner A, Springer NP. Comparing parents of children with Down syndrome at different life span stages. Journal of Marriage & Family. 2016;78(4):1131-1148. doi:10.1111/jomf.12312
33. Staats N, Nelson Goff BS, Springer N, Monk JK. Parents of children with Down syndrome: A comparison of prenatal and postnatal diagnosis groups. Journal on Developmental Disabilities. 2015;21(2):83-94.
34. McCubbin HI, Olson DH, Larsen AS. F-COPES: Family crisis oriented personal evaluation scales. In: McCubbin HI, Thompson, AI, eds. Family Assessment Inventories for Research and Practice. University of Wisconsin; 1991:259-270.
35. Boss P. Boundary ambiguity: A block to cognitive coping. In: Turnbull JM, Patterson JM, Behr SK, Murphy DL, Marquis JG, Blue-Banning MJ, eds. Cognitive Coping, Families, and Disability. Paul H. Brookes Publishing; 1993:257-270.
36. Richards L, Morse JM. Readme First for a User's Guide to Qualitative Methods. SAGE Publications, Inc; 2002.
37. Kingsbury N, Scanzoni J. Structural functionalism. In: Boss P, Doherty WJ, LaRossa R, Schumm WR, Steinmetz SK, eds. Sourcebook of Family Theories and Methods: A Contextual Approach. Springer Science & Business Media; 1993:207-210.
38. Springer NP, Turns B, Masterson M. A systemic and contextual lens of disability: Family stress, ambiguous loss, and meaning making. In: Nelson Goff BS, Piland Springer N, eds. Intellectual and Developmental Disabilities: A Roadmap for Families and Professionals. Routledge/Taylor & Francis; 2018:17-31.
39. Boss P, Greenberg J. Family boundary ambiguity: A new variable in family stress theory. Family Process. 1984;23(4):535-546. doi:10.1111/j.1545-5300.1984.00535.x
40. Rolland JS. Helping Couples and Families Navigate Illness and Disability: An Integrated Approach. Guilford Press; 2018.
41. Budner S. Tolerance for ambiguity scale. Journal of Personality. 1962;30(1):29-50.
42. Ramisch JL, Piland N. Systemic approaches for children, adolescents, and families living with neurodevelopmental disorders. In: Wampler KS, McWey LM, eds. The Handbook of Systemic Family Therapy. Vol 2. John Wiley & Sons; 2020:369-396. doi:10.1002/9781119438519.ch48
43. Romney J. The lived experience of functionality in families with a child diagnosed with autism spectrum disorder: An interpretive phenomenological analysis. Published online 2022.
44. Harris DL, Winokuer HW. Living losses: Nonfinite loss, ambiguous loss, and chronic sorrow. In: Harris DL, Winokuer HW, eds. Principles and Practices of Grief Counseling, 3rd Ed. Springer Publishing; 2019:121-138.