Send letter to journal:
Re: Hope and spina bifida

Dear Editor

Our group has been evaluating ways[1] of empowering parents to promote family centred care in the neonatal intensive care unit.[2] We therefore read with interest the important article showing parental hope to be more strongly associated with the health related quality of life (HRQL) than neonatal or current physical deficits.[3]

Hope is prevalent amongst parents and staff in the neonatal intensive care unit[4] and comes in a spectrum ranging from hope for survival to hope of a normal outcome. We would like the authors to define what hope is. It is interesting that hope is not listed in the Mosby’s Dictionary but hopelessness is: "a state in which an individual sees limited or no alternatives or personal choices available and is unable to mobilize energy on his or her own behalf."[5]

The incidence of single parent families in the cohort was 17%. This is lower than the 50% reported in an earlier study with divorce rate for families having a child with spina bifida being nine times higher than that for the local population.[6] We also note that 54% of the 13 to 20 year olds responded to the study. There is a risk of ascertainment bias as it is possible that those who did not cooperate may have a poorer outcome.[7]

As important as parental hope is the hope of the child with spina bifida, the attitude of siblings and the health care givers (including intervention services and respite care services) both in the neonatal and post discharge period. For the 13 to 20 year olds it would have been informative to correlate HRQL with the Miller’s Hope Scale (MHS) of the children themselves. Do we know what is the earliest age that a child is able to hope? The authors may also like to discuss why they did not include parental hope in the first 5 years of life considering the critical period for infant-parent bonding.[8] What is the incidence of mental retardation amongst the children and how does it impact on MHS and HRQL? Is there any significant difference for children born in the periods of aggressive treatment compared with those born during the period of selective treatment.

It is possible that parental hope does not improve HRQL in the child; rather improved HRQL of the child allows parental hope. Thus hope may be the result rather than the cause of better HRQL.

THHG Koh MA FRCPCH FRACP
Senior Staff Specialist in Neonatal Paediatrics
Collie L RN
Neonatal Research Nurse
Budge D RN
Neonatal Research Nurse
Regional NICU, Kirwan Hospital
Townsville, Great Barrier Reef
Queensland 4817, Australia

This is part of the T.A.P.E. project, funded by The Royal Children's Hospital Foundation, Brisbane.

References
(1) Koh THHG, Jarvis C. Promoting effective communication in NICU by audiotaping parents-neonatologist conversations. Int J Clin Pract 1998;52:27-9.

(2) Harrison H. The principles of family-centered neonatal care. Pediatrics 1993;92:643-50.

(3) Kirpalani HM, Parkin PC, Willan AR, Fehlings DL, Rosenbaum PL, King D, Van Nie AJ. Quality of life in spina bifida: importance of parental hope. Arch Dis Child 2000;83:293-7.

(4) Cole FS. Extremely preterm birth--defining the limits of hope. N Engl J Med 2000;343:429-30.

(5) Mosby’s Dictionary. 3rd Ed, CV Mosby Company St Louis, 1990.

(6) Tew BJ, Laurence KM, Payne H, Rawnsley K. Marital stability following the birth of a child with spina bifida. Br J Psychiatry 1977;131:79-82.

(7) Tin W, Fritz S, Wariyar U, Hey E. Outcome of very preterm birth: children reviewed with ease at 2 years differ from those followed up with difficulty. Arch Dis Child Fetal Neonatal Ed 1998;79:F83-7.

Send letter to journal:
Re: Re: Hope and spina bifida

We appreciate Dr Koh's interest in our study, and his questions. We have divided these into three main arenas, in order to address them:

(1) The philosophy & meaning of "Hope"
Dr Koh et al pose several questions as to what Hope is. While in everyday usage, Hope stands in direct contrast to "Hopelessness" - it is unclear if this is applicable to available instruments. We chose the Miller Hope Scale, as it was developed within an acceptable methodological framework,[1] although others are available.[2]

"Hopelessness", assessed by the Beck scale[3] is designed to assess potential for suicide. In general, the overlap or contrast between measured domains in different available instruments has received sparse attention. To reply to Dr Koh therefore, we must revert to the definition of hope provided by Miller et al, who constructed the instrument we used:
"Hope was.. a state of being characterized by an anticipation for a continued good state, an improved state or a release from a perceived entrapment".[4]
In framing our own hypotheses, Miller's definition paralleled both our concepts, and those of a parents' support group for Spina Bifida (SB & HC Association Canada).

Conveying the fuller meaning of hope might require other than dictionary definitions, and possibly "other eyes", to suggest insights into what is Hope? Many examples can be offered from art or the "spiritual" world. We think that Percy Bysshe Shelley's words on Prometheus, aptly describe a daring hope triumphing over fear and despondency:
"To hope till hope creates, From its own wreck the thing it contemplates."[5]

(2) Parent's Hope versus Children's Hope
Dr Koh asks why we did not measure hope in the children, and what is known of its ontogeny? Our choice of measurement instrument was predicated upon a valid tool. The Miller scale was validated only in adults, for which reason we did not assess it in the adolescents. The ontogeny of hope, is undoubtedly an area that should receive more attention. Available instruments to measure children's hope were explicitly constructed for use in psychiatrically ill children.[6] Kashani utilized Kazdin's scale to assess the change in "hopelessness" from ages 8 to 17 years, concluding it did not increase through the adolescent years.[7] To what extent these findings are relevant to non-psychiatrically ill children remains uncertain. Even more complex is the inter-relation of adult scales and childhood scales.

To what extent do they even tap similar domains and concepts? We believe these fundamental questions need study, before linking instrument results in order to correlate a childhood and adult "continuity" of hope. A related problem has engendered much discussion in the HRQL literature concerning when can children articulate their own HRQL.[8] For these several reasons, we avoided the age group less than 5 years, and cannot offer data on what age is hope either "fixed" or, further enabled.

(3) Specific Aspects of our Study
Dr Koh also questions the direction of association between hope and HRQL, and asks other specific questions of our study. Our study did ask some a-priori questions, but was subject to limitations, which we freely acknowledged. In our paper, we already pointed out that the primary limitation is that it was retrospective, and does not allow for insight into differentiating between causality or association. Whether the child's HRQL is because of a higher "Hope"-fulness - or vice-versa - is completely unknown as of now.

Other matters: The incidence of single parenthood will vary by country and regional cohorts, and is likely not an inherent bias in our study. The lower response rate in the adolescent population, we agree, raises the issue of ascertainment bias. However reactions of teenagers are somewhat complex and the post-hoc power calculation ameliorated our concerns, to some extent. Had we given these teenagers, a further burden of response implied by an additional maneuver such as the MHS as Dr Koh et al suggest, it is possible our rates might have been lower still.

We are currently planning a prospective study to address some of these important questions.

Haresh Kirpalani, BM, FRCP(C), MSc
Patricia Parkin, MD, FRCP(C)
Peter Rosenbaum, MD, MSc, FRCP(C)
Darcy Fehlings, MD, FRCP(C)

References
(1) Kirshner B, Guyatt G. A methodological framework for assessing health indices. J Chronic Dis 1985;38:27-36.

(2) Reviewed in Kirpalani H, Hope or Biology in Spina Bifida: Can a future quality of life be predicted at birth. MSc1996, McMaster University, Hamilton, Ontario.

(3) Beck AT, Wiessman A, Lester D, Trexler L. The measurement of pessimism: the hopelessness scale. J Consult Clin Psychol 1974;42:861-5.

(4) Miller JF, Powers MJ. Development of an instrument to measure hope. Nurs Res 1988;37:6-10.

(5) Shelley PB. Prometheus Unbound. Poems of Shelley, 1919. Ed: Hutchison T. Oxford University Press, London. Conclusion, 4th Act; Lines; 573-574, pp 263-4.

(6) Kazdin AE, Rodgers A, Colbus D. The hopelessness scale for children: psychometric characteristics and concurrent validity. J Consult Clin Psychol 1986;54:241-5.

(7) Kashini JH, Reid JC, Rosenberg TK. Levels of hopelessness in children and adolescents: a developmental perspective. J Consult Clin Psychol 1989;57:496-9.