A Novel Narrative E-Writing Intervention for Parents of Children With Chronic Life-Threatening Illnesses: Protocol for a Pilot, Open-Label Randomized Controlled Trial

Andy Hau Yan Ho, Oindrila Dutta, Geraldine Tan-Ho, Toh Hsiang Benny Tan, Xinyi Casuarine Low, Sashikumar Ganapathy, Josip Car, Ringo Moon-Ho Ho, Chun Yan Miao, Andy Hau Yan Ho, Oindrila Dutta, Geraldine Tan-Ho, Toh Hsiang Benny Tan, Xinyi Casuarine Low, Sashikumar Ganapathy, Josip Car, Ringo Moon-Ho Ho, Chun Yan Miao

Abstract

Background: A novel evidence-based Narrative e-Writing Intervention (NeW-I) has been developed and tested in Singapore to advance psychosociospiritual support for parents of children with chronic life-threatening illnesses. NeW-I is informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of parental bereavement and supported by literature on anticipatory grief interventions for improving the holistic well-being of parent caregivers of seriously ill children.

Objective: This study's aim was to provide an accessible platform, NeW-I-which is a strengths- and meaning-focused and therapist-facilitated mobile app and web-based counseling platform-that aims to enhance quality of life, spiritual well-being, hope, and perceived social support and reduce depressive symptoms, caregiver burden, and risk of complicated grief among parents of children with chronic life-threatening illnesses.

Methods: The NeW-I therapist-facilitated web-based platform comprises a mobile app and a website (both of which have the same content and functionality). NeW-I has been implemented in Singapore as a pilot open-label randomized controlled trial comprising intervention and control groups. Both primary and secondary outcomes will be self-reported by participants through questionnaires. In collaboration with leading pediatric palliative care providers in Singapore, the trial aims to enroll 36 participants in each group (N=72), so that when allowing for 30% attrition at follow-up, the sample size will be adequate to detect a small effect size of 0.2 in the primary outcome measure, with 90% power and two-sided significance level of at least .05. The potential effectiveness of NeW-I and the accessibility and feasibility of implementing and delivering the intervention will be assessed.

Results: Funding support and institutional review board approval for this study have been secured. Data collection started in January 2019 and is ongoing.

Conclusions: NeW-I aspires to enhance holistic pediatric palliative care services through a structured web-based counseling platform that is sensitive to the unique cultural needs of Asian family caregivers who are uncomfortable with expressing emotion even during times of loss and separation. The findings of this pilot study will inform the development of a full-scale NeW-I protocol and further research to evaluate the efficacy of NeW-I in Singapore and in other Asian communities around the world.

Trial registration: ClinicalTrials.gov NCT03684382; https://ichgcp.net/clinical-trials-registry/NCT03684382.

International registered report identifier (irrid): DERR1-10.2196/17561.

Keywords: cyber-counseling; end-of-life care; mobile phone; narrative therapy; pediatric palliative care; psychotherapy; randomized controlled trial.

Conflict of interest statement

Conflicts of Interest: None declared.

©Andy Hau Yan Ho, Oindrila Dutta, Geraldine Tan-Ho, Toh Hsiang Benny Tan, Casuarine Xinyi Low, Sashikumar Ganapathy, Josip Car, Ringo Moon-Ho Ho, Chun Yan Miao. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 05.07.2020.

Figures

Figure 1
Figure 1
Trauma to transformation model of parental bereavement in Asia.
Figure 2
Figure 2
Description of Narrative e-Writing Intervention (NeW-I) procedures.

References

    1. Fraser LK, Miller M, Hain R, Norman P, Aldridge J, McKinney PA, Parslow RC. Rising national prevalence of life-limiting conditions in children in England. Pediatrics. 2012 Apr;129(4):e923–9. doi: 10.1542/peds.2011-2846.
    1. Herbert A. Faculty of Medicine: University of Queensland. 2017. [2020-04-24]. Palliative Care for Children Often Involves Treating the Whole Family .
    1. Committee on the Rights of the Child REACH. 2017. [2020-04-28]. Public Consultation on Singapore's 4th/5th Periodic Report on The UNCRC .
    1. Chong PH, Chan MY, Yusri LI. Do children die? A retrospective review of deaths in a children's hospital. Singapore Med J. 2012 Mar;53(3):192–5.
    1. Cadell S, Kennedy K, Hemsworth D. Informing social work practice through research with parent caregivers of a child with a life-limiting illness. J Soc Work End Life Palliat Care. 2012;8(4):356–81. doi: 10.1080/15524256.2012.732021.
    1. Doka K. Ethics, end-of-life decisions and grief. Mortality. 2005 Feb;10(1):83–90. doi: 10.1080/13576270500031105.
    1. Bergstraesser E, Inglin S, Hornung R, Landolt MA. Dyadic coping of parents after the death of a child. Death Stud. 2015;39(1-5):128–38. doi: 10.1080/07481187.2014.920434.
    1. Alam R, Barrera M, D'Agostino N, Nicholas DB, Schneiderman G. Bereavement experiences of mothers and fathers over time after the death of a child due to cancer. Death Stud. 2012 Jan;36(1):1–22. doi: 10.1080/07481187.2011.553312.
    1. Jordan J, Price J, Prior L. Disorder and disconnection: parent experiences of liminality when caring for their dying child. Sociol Health Illn. 2015 Jul;37(6):839–55. doi: 10.1111/1467-9566.12235.
    1. Meert KL, Eggly S, Pollack M, Anand KJ, Zimmerman J, Carcillo J, Newth CJ, Dean JM, Willson DF, Nicholson C, National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network Parents' perspectives on physician-parent communication near the time of a child's death in the pediatric intensive care unit. Pediatr Crit Care Med. 2008 Jan;9(1):2–7. doi: 10.1097/01.PCC.0000298644.13882.88.
    1. Dellve L, Samuelsson L, Tallborn A, Fasth A, Hallberg LR. Stress and well-being among parents of children with rare diseases: a prospective intervention study. J Adv Nurs. 2006 Feb;53(4):392–402. doi: 10.1111/j.1365-2648.2006.03736.x.
    1. Dutta O, Tan-Ho G, Choo P, Ho A. Lived experience of a child's chronic illness and death: a qualitative systematic review of the parental bereavement trajectory. Death Stud. 2019;43(9):547–61. doi: 10.1080/07481187.2018.1503621.
    1. Dutta O, Tan-Ho G, Choo PY, Low XC, Chong PH, Ng C, Ganapathy S, Ho AH. Trauma to transformation: the lived experience of bereaved parents of children with chronic life-threatening illnesses in Singapore. BMC Palliat Care. 2020 Apr 6;19(1):46. doi: 10.1186/s12904-020-00555-8.
    1. Ho AH, Dutta O, Tan-Ho G, Choo PY, Low XC, Chong PH, Ng C, Ganapathy S. Thematic analysis of spousal interaction patterns among Asian parents of children with chronic life-threatening illness. BMJ Open. 2019 Nov 19;9(11):e032582. doi: 10.1136/bmjopen-2019-032582.
    1. Tan JS, Docherty SL, Barfield R, Brandon DH. Addressing parental bereavement support needs at the end of life for infants with complex chronic conditions. J Palliat Med. 2012 May;15(5):579–84. doi: 10.1089/jpm.2011.0357.
    1. Rini A, Loriz L. Anticipatory mourning in parents with a child who dies while hospitalized. J Pediatr Nurs. 2007 Aug;22(4):272–82. doi: 10.1016/j.pedn.2006.08.008.
    1. Al-Gamal E, Long T. Anticipatory grieving among parents living with a child with cancer. J Adv Nurs. 2010 Sep;66(9):1980–90. doi: 10.1111/j.1365-2648.2010.05381.x.
    1. Kreicbergs UC, Lannen P, Onelov E, Wolfe J. Parental grief after losing a child to cancer: impact of professional and social support on long-term outcomes. J Clin Oncol. 2007 Aug 1;25(22):3307–12. doi: 10.1200/JCO.2006.10.0743.
    1. Harvey S, Snowdon C, Elbourne D. Effectiveness of bereavement interventions in neonatal intensive care: a review of the evidence. Semin Fetal Neonatal Med. 2008 Oct;13(5):341–56. doi: 10.1016/j.siny.2008.03.011.
    1. Contro N, Sourkes BM. Opportunities for quality improvement in bereavement care at a children's hospital: assessment of interdisciplinary staff perspectives. J Palliat Care. 2012;28(1):28–35.
    1. Murray JA, Terry DJ, Vance JC, Battistutta D, Connolly Y. Effects of a program of intervention on parental distress following infant death. Death Stud. 2000 Jun;24(4):275–305. doi: 10.1080/074811800200469.
    1. Endo K, Yonemoto N, Yamada M. Interventions for bereaved parents following a child's death: a systematic review. Palliat Med. 2015 Jul;29(7):590–604. doi: 10.1177/0269216315576674.
    1. William) WJ. Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner. London, UK: Routledge; 2003.
    1. Ivancovich D. Trinity Western University. 2004. [2020-04-23]. The Role of Existential Coping and Spiritual Coping in Anticipatory Grief .
    1. Chochinov H, Kristjanson L, Breitbart W, McClement S, Hack T, Hassard T, Harlos M. Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial. Lancet Oncol. 2011 Aug;12(8):753–62. doi: 10.1016/S1470-2045(11)70153-X.
    1. Neimeyer R, Keesee N. Dimensions of diversity in the reconstruction of meaning. In: Doka K, editor. Living With Grief: Who We Are How We Grieve. New York, USA: Routledge; 1998. pp. 223–7.
    1. Stroebe M, Schut H. The dual process model of coping with bereavement: rationale and description. Death Stud. 1999;23(3):197–224. doi: 10.1080/074811899201046.
    1. Gilbert K. 'We've had the same loss, why don't we have the same grief?' loss and differential grief in families. Death Stud. 1996 May;20(3):269–83. doi: 10.1080/07481189608252781. doi: 10.1080/07481189608252781.
    1. Dysvik E, Natvig G, Furnes B. A narrative approach to explore grief experiences and treatment adherence in people with chronic pain after participation in a pain-management program: a 6-year follow-up study. Patient Prefer Adherence. 2013 Aug;7:751–6. doi: 10.2147/ppa.s46272.
    1. Morris C, Simpson J, Sampson M, Beesley F. Emotion and self-cutting: narratives of service users referred to a personality disorder service. Clin Psychol Psychother. 2015;22(2):125–32. doi: 10.1002/cpp.1870.
    1. Chochinov H, Hack T, Hassard T, Kristjanson L, McClement S, Harlos M. Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. J Clin Oncol. 2005 Aug 20;23(24):5520–5. doi: 10.1200/JCO.2005.08.391.
    1. McClement S, Chochinov HM, Hack T, Hassard T, Kristjanson LJ, Harlos M. Dignity therapy: family member perspectives. J Palliat Med. 2007 Oct;10(5):1076–82. doi: 10.1089/jpm.2007.0002.
    1. Ho AH, Car J, Ho MR, Tan-Ho G, Choo PY, Patinadan PV, Chong PH, Ong WY, Fan G, Tan YP, Neimeyer RA, Chochinov HM. A novel family dignity intervention (FDI) for enhancing and informing holistic palliative care in Asia: study protocol for a randomized controlled trial. Trials. 2017 Dec 4;18(1):587. doi: 10.1186/s13063-017-2325-5.
    1. Griffiths K, Christensen H. Review of randomised controlled trials of internet interventions for mental disorders and related conditions. Clin Psychol. 2006;10(1):16–29. doi: 10.1080/13284200500378696.
    1. Newman MG, Szkodny LE, Llera SJ, Przeworski A. A review of technology-assisted self-help and minimal contact therapies for anxiety and depression: is human contact necessary for therapeutic efficacy? Clin Psychol Rev. 2011 Feb;31(1):89–103. doi: 10.1016/j.cpr.2010.09.008.
    1. Barak A, Hen L, Boniel-Nissim M, Shapira N. A comprehensive review and a meta-analysis of the effectiveness of internet-based psychotherapeutic interventions. J Technol Hum Serv. 2008 Jul 3;26(2-4):109–60. doi: 10.1080/15228830802094429. doi: 10.1080/15228830802094429.
    1. Gainsbury S, Blaszczynski A. A systematic review of internet-based therapy for the treatment of addictions. Clin Psychol Rev. 2011 Apr;31(3):490–8. doi: 10.1016/j.cpr.2010.11.007.
    1. Kaltenthaler E, Parry G, Beverley C. Computerized cognitive behaviour therapy: a systematic review. Behav Cogn Psychother. 2004 Feb 18;32(1):31–55. doi: 10.1017/S135246580400102X.
    1. Ploeg J, Ali MU, Markle-Reid M, Valaitis R, Bartholomew A, Fitzpatrick-Lewis D, McAiney C, Sherifali D. Caregiver-focused, web-based interventions: systematic review and meta-analysis (part 2) J Med Internet Res. 2018 Oct 26;20(10):e11247. doi: 10.2196/11247.
    1. Sherifali D, Ali MU, Ploeg J, Markle-Reid M, Valaitis R, Bartholomew A, Fitzpatrick-Lewis D, McAiney C. Impact of internet-based interventions on caregiver mental health: systematic review and meta-analysis. J Med Internet Res. 2018 Jul 3;20(7):e10668. doi: 10.2196/10668.
    1. Williams A, Duggleby W, Eby J, Cooper RD, Hallstrom LK, Holtslander L, Thomas R. Hope against hope: exploring the hopes and challenges of rural female caregivers of persons with advanced cancer. BMC Palliat Care. 2013 Dec 17;12(1):44. doi: 10.1186/1472-684X-12-44.
    1. Perle J, Langsam L, Nierenberg B. Controversy clarified: an updated review of clinical psychology and tele-health. Clin Psychol Rev. 2011 Dec;31(8):1247–58. doi: 10.1016/j.cpr.2011.08.003.
    1. Suler J. The online disinhibition effect. Cyberpsychol Behav. 2004 Jun;7(3):321–6. doi: 10.1089/1094931041291295.
    1. Digital News Asia. 2017. [2020-04-23]. Singapore Consumers Digitally Savvy; Demand Secure, Affordable, High-Quality Experiences .
    1. Moon EW, Tan NC, Allen JC, Jafar TH. The use of wireless, smartphone app-assisted home blood pressure monitoring among hypertensive patients in Singapore: pilot randomized controlled trial. JMIR Mhealth Uhealth. 2019 May 28;7(5):e13153. doi: 10.2196/13153.
    1. Haldane V, Tan YG, Teo KW, Koh JJ, Srivastava A, Cheng RX, Yap YC, Ong P, van Dam RM, Foo JM, Müller-Riemenschneider F, Koh GC, Perel P, Legido-Quigley H. Perspectives on acceptance and use of a mobile health intervention for the prevention of atherosclerotic cardiovascular disease in Singapore: mixed-methods study. JMIR Mhealth Uhealth. 2019 Mar 14;7(3):e11108. doi: 10.2196/11108.
    1. Ho AH. University of Hong Kong. 2013. [2020-04-28]. Living and Dying With Dignity: An Interpretive-systemic Framework in Hong Kong .
    1. Campbell M, Fitzpatrick R, Haines A, Kinmonth A, Sandercock P, Spiegelhalter D, Tyrer P. Framework for design and evaluation of complex interventions to improve health. Br Med J. 2000 Sep 16;321(7262):694–6. doi: 10.1136/bmj.321.7262.694.
    1. Lakshman R, Griffin S, Hardeman W, Schiff A, Kinmonth A, Ong K. Using the medical research council framework for the development and evaluation of complex interventions in a theory-based infant feeding intervention to prevent childhood obesity: the baby milk intervention and trial. J Obes. 2014;2014:646504. doi: 10.1155/2014/646504. doi: 10.1155/2014/646504.
    1. Neimeyer R. Bereavement and the quest for meaning: rewriting stories of loss and grief. Hellenic J Psychol. 2006;3:181–8.
    1. Toyama H, Honda A. Using narrative approach for anticipatory grief among family caregivers at home. Glob Qual Nurs Res. 2016;3:2333393616682549. doi: 10.1177/2333393616682549.
    1. Government of Singapore Singapore Statutes Online. 2019. [2020-04-24]. Children and Young Persons Act .
    1. Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001 Sep;16(9):606–13. doi: 10.1046/j.1525-1497.2001.016009606.x.
    1. Andrews G, Slade T. Interpreting scores on the Kessler psychological distress scale (K10) Aust N Z J Public Health. 2001 Dec;25(6):494–7. doi: 10.1111/j.1467-842x.2001.tb00310.x.
    1. Whitehead AL, Julious SA, Cooper CL, Campbell MJ. Estimating the sample size for a pilot randomised trial to minimise the overall trial sample size for the external pilot and main trial for a continuous outcome variable. Stat Methods Med Res. 2016 Jun;25(3):1057–73. doi: 10.1177/0962280215588241.
    1. Cuijpers P, van Straten A, Bohlmeijer E, Hollon SD, Andersson G. The effects of psychotherapy for adult depression are overestimated: a meta-analysis of study quality and effect size. Psychol Med. 2010 Feb;40(2):211–23. doi: 10.1017/S0033291709006114.
    1. Frattaroli J. Experimental disclosure and its moderators: a meta-analysis. Psychol Bull. 2006 Nov;132(6):823–65. doi: 10.1037/0033-2909.132.6.823.
    1. Siebens HC, Tsukerman D, Adkins RH, Kahan J, Kemp B. Correlates of a single-item quality-of-life measure in people aging with disabilities. Am J Phys Med Rehabil. 2015 Dec;94(12):1065–74. doi: 10.1097/PHM.0000000000000298.
    1. Bredle J, Salsman J, Debb S, Arnold B, Cella D. Spiritual well-being as a component of health-related quality of life: the functional assessment of chronic illness therapy—spiritual well-being scale (FACIT-Sp) Religions. 2011;2(1):77–94. doi: 10.3390/rel2010077.
    1. Herth K. Abbreviated instrument to measure hope: development and psychometric evaluation. J Adv Nurs. 1992 Oct;17(10):1251–9. doi: 10.1111/j.1365-2648.1992.tb01843.x.
    1. Graessel E, Berth H, Lichte T, Grau H. Subjective caregiver burden: validity of the 10-item short version of the burden scale for family caregivers BSFC-s. BMC Geriatr. 2014 Feb 20;14:23. doi: 10.1186/1471-2318-14-23.
    1. Hogan N, Schmidt L. Testing the grief to personal growth model using structural equation modeling. Death Stud. 2002 Oct;26(8):615–34. doi: 10.1080/07481180290088338.
    1. Shear K, Jackson C, Essock S, Donahue S, Felton C. Screening for complicated grief among project liberty service recipients 18 months after September 11, 2001. Psych Serv. 2006;57(9):1291–7. doi: 10.1037/t62516-000.
    1. Schulz KF, Altman DG, Moher D, CONSORT Group CONSORT 2010 statement: updated guidelines for reporting parallel group randomised trials. BMC Med. 2010 Mar 24;8:18. doi: 10.1186/1741-7015-8-18.
    1. Gamble C, Krishan A, Stocken D, Lewis S, Juszczak E, Doré C, Williamson PR, Altman DG, Montgomery A, Lim P, Berlin J, Senn S, Day S, Barbachano Y, Loder E. Guidelines for the content of statistical analysis plans in clinical trials. J Am Med Assoc. 2017 Dec 19;318(23):2337–43. doi: 10.1001/jama.2017.18556.
    1. Rabe-Hesketh S, Skrondal A. Multilevel and Longitudinal Modeling Using Stata. Texas, USA: Stata Press; 2012.
    1. Johnson D, Young R. Toward best practices in analyzing datasets with missing data: comparisons and recommendations. J Marriage Fam Couns Internet. 2019;73(5):926–45. doi: 10.1111/j.1741-3737.2011.00861.x.
    1. Rubin D. Multiple Imputation for Nonresponse in Surveys. New York, USA: John Wiley & Sons; 1987.
    1. Groenewald T. A phenomenological research design illustrated. Int J Qual Methods. 2016 Nov 29;3(1):42–55. doi: 10.1177/160940690400300104. doi: 10.1177/160940690400300104.
    1. Yelvington D. Capella University. 2013. [2020-04-28]. Parents' Perceptions About Their Participation in an Equine Assisted Grief-Group Experience .
    1. Donker T, Blankers M, Hedman E, Ljótsson B, Petrie K, Christensen H. Economic evaluations of internet interventions for mental health: a systematic review. Psychol Med. 2015 Dec;45(16):3357–76. doi: 10.1017/S0033291715001427.
    1. Singapore Department of Statistics (DOS) 2017. [2020-04-24]. Population Trends .

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