"Concurrent Ropes and Ladders": Mapping and Conceptualizing the Emotional Loss Experience of Parents Following Pediatric Acquired Brain Injury

Overview

Journal Qual Health Res

Publisher Sage Publications

Specialty Health Services

Date 2021 May 24

PMID 34024215

Authors

Einat Yehene

Pnina Steinberg

Maya Gerner

Amichai Brezner

Jana Landa

Affiliations

Soon will be listed here.

Abstract

This grounded theory study aims to map, conceptualize, and theorize the emotional loss experienced by parents following their child's pediatric acquired brain injury (pABI). Data were obtained from 47 semi-structured interviews conducted with parents (72% mothers) at least 1 year following pABI. The study's theory of "concurrent ropes and ladders" emerged from a process of initial in vivo coding followed by focused and thematic coding. Codes were consolidated into five thematic categories capturing parents' emotional continuous loss experience: (a) comparing life before and after, (b) struggling to construct new realities, (c) recognizing instability and permanency, (d) adjusting and readjusting, and (e) grieving as an emotional shadow. These categories are at work simultaneously in parents' accounts, thus supporting a model of dynamic concurrency within and across their lived experiences. Recommendations for practitioners were derived from the theory to support parents' emotional coping with living loss throughout the chronic stage.

References

Damrosch S, Perry L . Self-reported adjustment, chronic sorrow, and coping of parents of children with Down syndrome. Nurs Res. 1989; 38(1):25-30. View

Chevignard M, Toure H, Brugel D, Poirier J, Laurent-Vannier A . A comprehensive model of care for rehabilitation of children with acquired brain injuries. Child Care Health Dev. 2009; 36(1):31-43. DOI: 10.1111/j.1365-2214.2009.00949.x. View

Germer C, Neff K . Self-compassion in clinical practice. J Clin Psychol. 2013; 69(8):856-67. DOI: 10.1002/jclp.22021. View

Kirk S, Fallon D, Fraser C, Robinson G, Vassallo G . Supporting parents following childhood traumatic brain injury: a qualitative study to examine information and emotional support needs across key care transitions. Child Care Health Dev. 2014; 41(2):303-13. DOI: 10.1111/cch.12173. View

Micklewright J, King T, OToole K, Henrich C, Floyd F . Parental distress, parenting practices, and child adaptive outcomes following traumatic brain injury. J Int Neuropsychol Soc. 2012; 18(2):343-50. DOI: 10.1017/S1355617711001792. View

Brown F, Whittingham K, Sofronoff K, Boyd R . Parenting a child with a traumatic brain injury: experiences of parents and health professionals. Brain Inj. 2013; 27(13-14):1570-82. DOI: 10.3109/02699052.2013.841996. View

Lassetter J, Mandleco B, Roper S . Family photographs: expressions of parents raising children with disabilities. Qual Health Res. 2007; 17(4):456-67. DOI: 10.1177/1049732306298804. View

Wade S, Taylor H, Drotar D, Stancin T, Yeates K . Family burden and adaptation during the initial year after traumatic brain injury in children. Pediatrics. 1998; 102(1 Pt 1):110-6. DOI: 10.1542/peds.102.1.110. View

Donders J, Warschausky S . Neurobehavioral outcomes after early versus late childhood traumatic brain injury. J Head Trauma Rehabil. 2007; 22(5):296-302. DOI: 10.1097/01.HTR.0000290974.01872.82. View

10.

Zinner E, Ball J, Stutts M, Philput C . Grief reactions of mothers of adolescents and young adults with traumatic brain injury. Arch Clin Neuropsychol. 1997; 12(5):435-47. View

11.

Wade S, Taylor H, Yeates K, Drotar D, Stancin T, Minich N . Long-term parental and family adaptation following pediatric brain injury. J Pediatr Psychol. 2005; 31(10):1072-83. DOI: 10.1093/jpepsy/jsj077. View

12.

Niemeier J, Burnett D . No such thing as 'uncomplicated bereavement' for patients in rehabilitation. Disabil Rehabil. 2001; 23(15):645-53. DOI: 10.1080/09638280110049324. View

13.

Hickey L, Anderson V, Hearps S, Jordan B . Family appraisal of paediatric acquired brain injury: a social work clinical intervention trial. Dev Neurorehabil. 2018; 21(7):457-464. DOI: 10.1080/17518423.2018.1434697. View

14.

Eakes G, Burke M, Hainsworth M . Middle-range theory of chronic sorrow. Image J Nurs Sch. 1998; 30(2):179-84. DOI: 10.1111/j.1547-5069.1998.tb01276.x. View

15.

Armstrong K, Kerns K . The assessment of parent needs following paediatric traumatic brain injury. Pediatr Rehabil. 2003; 5(3):149-60. DOI: 10.1080/1363849021000039353. View

16.

Coughlin M, Sethares K . Chronic Sorrow in Parents of Children with a Chronic Illness or Disability: An Integrative Literature Review. J Pediatr Nurs. 2017; 37:108-116. DOI: 10.1016/j.pedn.2017.06.011. View

17.

Brown F, Whittingham K, Boyd R, McKinlay L, Sofronoff K . Does Stepping Stones Triple P plus Acceptance and Commitment Therapy improve parent, couple, and family adjustment following paediatric acquired brain injury? A randomised controlled trial. Behav Res Ther. 2015; 73:58-66. DOI: 10.1016/j.brat.2015.07.001. View

18.

Stroebe M, Schut H . The dual process model of coping with bereavement: rationale and description. Death Stud. 2000; 23(3):197-224. DOI: 10.1080/074811899201046. View

19.

Rivara J, Fay G, Jaffe K, Polissar N, Shurtleff H, Martin K . Predictors of family functioning one year following traumatic brain injury in children. Arch Phys Med Rehabil. 1992; 73(10):899-910. View

20.

Clark L, Canary H, McDougle K, Perkins R, Tadesse R, Holton A . Family Sense-Making After a Down Syndrome Diagnosis. Qual Health Res. 2020; 30(12):1783-1797. PMC: 7814853. DOI: 10.1177/1049732320935836. View