Hostname: page-component-848d4c4894-x24gv Total loading time: 0 Render date: 2024-05-06T23:51:47.835Z Has data issue: false hasContentIssue false
  • English
  • Français

Planning with parents for seriously ill children: Preliminary results on the development of the parental engagement scale

Published online by Cambridge University Press:  22 November 2011

Joan A. Kearney  and
Mary W. Byrne
Joan A. Kearney*
Affiliation:
Columbia University School of Nursing, New York, New York
Mary W. Byrne
Affiliation:
Columbia University School of Nursing, New York, New York
*
Address correspondence and reprint requests to: Joan A Kearney, Columbia University School of Nursing, 630 West 168th Street New York, New York 10032. E-mail: jak2165@columbia.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

The objective of this study was to develop a clinically relevant tool to assess parental engagement in decision making and planning for seriously ill children during palliative care consultations. Although little is known about the structure and process of planning meetings between parents and providers, less is known about the nature of parental engagement as it relates to decision making ability in pediatric end-of-life care. Using attachment and caregiving as a framework, this study clarified important dimensions of parental engagement.

Method:

Using a multi-phase, template-matching technique, both literature and pediatric palliative care consultation data were analyzed, iteratively reviewed, matched, and categorized to create a measure of parental engagement. The attachment paradigm serves as the theoretical framework for the study, which focuses on parental engagement in decision making as a caregiving system function. Attachment and related literatures as well as coping and pediatric palliative care literatures were used in the initial conceptual sampling phase.

Results:

The study yielded two groups of findings. The first set of findings centered on the findings of the literature and consultation template-matching phases of the work. These two phases yielded a conceptual model of parental engagement as a psychobehavioral complex consisting of three dimensions: information-centered dialogue, insightful participation, and achievement of a collaboratively agreed-upon plan. The final phases consisted of creation of a 9 point Parental Engagement Scale, scoring of the consultations, and establishment of initial inter- rater reliability at .80. Psychometric testing continues.

Significance of results:

Parental engagement in decision making is a critical area for study and intervention. If we can support parents in their caregiving executive functions while understanding the psychological and emotional underpinnings of the caregiving system and parental engagement itself, we can move inquiry forward in understanding parental needs for intervention during this most profoundly challenging time.

Keywords

Pediatric palliative careParental engagementParental copingParental decision makingCollaborative planning
Type
Original Articles
Information
Palliative & Supportive Care , Volume 9 , Issue 4 , December 2011 , pp. 367 - 376
Copyright
Copyright © Cambridge University Press 2011

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Barnett, D., Clements, M., Kaplan-Estrin, M., et al. (2006). Maternal resolution of child diagnosis: Stability and relations with child attachment across the toddler to preschooler transition. Journal of Family Psychology, 20, 100–107.CrossRefGoogle ScholarPubMed
Burns, N. & Grove, S. K. (2009). The Practice of Nursing Research: Appraisal, Synthesis, and Generation of Evidence, 6th ed. St Louis: Elsevier.Google Scholar
Byrne, M., Tresgallo, M., Saroyan, J., et al. (2010). Qualitative analysis of consults by a pediatric advanced care team during its first year of service. American Journal of Hospice and Palliative Medicine, http://ajh.sagepub.com/content/early/2010/09/08/1049909110376626.Google Scholar
Clarke-Steffen, L. (1993). A model of the family transition to living with childhood cancer. Cancer Practice, 1, 285–292.Google Scholar
Cohen, M. (1993a). Diagnostic closure and the spread of uncertainty. Issues in Comprehensive Pediatric Nursing, 16, 135–146.CrossRefGoogle ScholarPubMed
Cohen, M. (1993b). The unknown and the unknowable: Managing sustained uncertainty. Western Journal of Nursing Research, 15, 77–96.CrossRefGoogle ScholarPubMed
Evans, J.S. & Over, D.E. (2010). Heuristic thinking and human intelligence: A commentary on Marewski, Gaissmaier and Gigerenzer. [Comment Letter]. Cognitive Processing, 11, 171–175; author reply 177–179.CrossRefGoogle ScholarPubMed
Feudtner, C. (2007). Collaborative communication in pediatric palliative care: A foundation for problem-solving and decision-making. Pediatric Clinics of North America, 54, 583–607, ix.CrossRefGoogle ScholarPubMed
Feudtner, C., Carroll, K.W., Hexem, K.R., et al. (2010). Parental hopeful patterns of thinking, emotions, and pediatric palliative care decision making: A prospective cohort study. Archives of Pediatrics & Adolescent Medicine, 164, 831–839.CrossRefGoogle ScholarPubMed
Folkman, S. & Moskowitz, J.T. (2004). Coping: Pitfalls and promise. Annual Review of Psychology, 55, 745–774.CrossRefGoogle ScholarPubMed
Fonagy, P., Target, M., Steele, H., et al. (1998). Reflective Functioning Coding Manual. University College.Google Scholar
George, C., Kaplan, N. & Main, M. (1985). Adult Attachment Interview. Berkeley: University of California at Berkeley.Google Scholar
Hickey, G. & Kipping, C. (1996). Issues in research: A multi-stage approach to the coding of data from open-ended questions. Nurse Researcher, 4, 81–91.CrossRefGoogle Scholar
Himelstein, B.P., Hilden, J.M., Boldt, A.M., et al. (2004). Pediatric palliative care. New England Journal of Medicine, 350, 1752–1762.CrossRefGoogle ScholarPubMed
Hinds, P.S., Birenbaum, L.K., Clarke-Steffen, L., et al. (1996). Coming to terms: Parents' response to a first cancer recurrence in their child. Nursing Research, 45, 148–153.CrossRefGoogle ScholarPubMed
Hsieh, H.F. & Shannon, S.E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288.CrossRefGoogle ScholarPubMed
Kazak, A.E., Boeving, C.A., Alderfer, M.A., et al. (2005). Posttraumatic stress symptoms during treatment in parents of children with cancer. Journal of Clinical Oncology, 23, 7405–7410.CrossRefGoogle ScholarPubMed
Lazarus, R. & Folkman, S. (1984). Stress, Appraisal and Coping. New York: Springer.Google Scholar
Marvin, R.S. & Pianta, R.C. (1996). Mothers' reactions to their child's diagnosis: Relations with security of attachment. Journal of Clinical Child Psychology, 25, 436–445.CrossRefGoogle Scholar
Mayring, P. (2000). Qualitative content analysis. Forum: Qualitative Social Research, http://www.qualitative-research.net/index.php/fqs/article/view/1089/2385.Google Scholar
Miedema, B., Hamilton, R., Fortin, P., et al. (2010). “You can only take so much, and it took everything out of me”: Coping strategies used by parents of children with cancer. Palliative & Supportive Care, 8, 197–206.CrossRefGoogle ScholarPubMed
Mishel, M.H. (1983). Parents' perception of uncertainty concerning their hospitalized child. Nursing Research, 32, 324–330.CrossRefGoogle ScholarPubMed
Pianta, R. & Marvin, R. (1992a). Manual for Classification of the Reaction to Diagnosis Interview. University of Virginia.Google Scholar
Pianta, R. & Marvin, R. (1992b). The Reaction to Diagnosis Classification System.Universtiy of Virginia.Google Scholar
Pianta, R.C., Marvin, R.S., Britner, P.A., et al. (1996). Mothers' resolution of their children's diagnosis: Organized patterns of caregiving representations. Infant Mental Health Journal, 17, 239–256.3.0.CO;2-J>CrossRefGoogle Scholar
Randolph, K.A., Fincham, F. & Radey, M. (2009). A framework for engaging parents in prevention. Journal of Family Social Work, 12, 56–72.CrossRefGoogle Scholar
Santacroce, S.J. (2003). Parental uncertainty and posttraumatic stress in serious childhood illness. Journal of Nursing Scholarship, 35, 45–51.CrossRefGoogle ScholarPubMed
Schuengel, C., Rentinck, I., Stolk, J., et al. (2009). Parents' reactions to the diagnosis of cerebral palsy: Associations between resolution, age and severity of disability. Child Care, Health & Development, 35, 673–680.CrossRefGoogle Scholar
Sharp, C. & Fonagy, P. (2008). The parent's capacity to treat the child as a psychological agent: Constructs, measures and implications for developmental psychopathology. Social Development, 17, 737–754.CrossRefGoogle Scholar
Slade, A. (2005). Parental reflective functioning: An introduction. Attachment & Human Development, 7, 269–281.CrossRefGoogle ScholarPubMed
Slade, A., Aber, J.L., Fiorello, J., et al. (1994). Parent Development Interview Coding System. New York: City University of New York.Google Scholar
Steele, M., Hodges, J., Kaniuk, J., et al. (2010). Mental representation and change: Developing attachment relationships in an adoption context. Psychoanalytic Inquiry, 30, 25–40.CrossRefGoogle Scholar
Steele, M., Kaniuk, J., Hodges, J., et al. (2008). Measuring mentalization across contexts: Links between representations of childhood and representations of parenting in an adoption sample. In Mind to Mind: Infant Research, Neuroscience, and Psychoanalysis, pp. 115–136. New York: Other Press.Google Scholar
Stuber, M.L., Kazak, A.E., Meeske, K., et al. (1998). Is posttraumatic stress a viable model for understanding responses to childhood cancer? Child & Adolescent Psychiatric Clinics of North America, 7, 169–182.CrossRefGoogle Scholar