Narrative E-Writing Intervention (NeW-I) for Parents of Children With Chronic Life-Threatening Illness
- Conditions
- Parent of Child With Chronic Life-threatening Illness
- Interventions
- Other: NeW-I group
- Registration Number
- NCT03684382
- Lead Sponsor
- Nanyang Technological University
- Brief Summary
Narrative e-Writing Intervention (NeW-I) is an evidence-based, strength-focused and meaning-oriented approach that aims at enhancing well-being, alleviating burden, and reducing adverse grief outcomes among Singaporean parents caring for a child with chronic life-threatening illness. In collaboration with KK Women's and Children's Hospital and Club Rainbow Singapore, a pilot randomized controlled trial with a built-in qualitative evaluation and feasibility study will be carried out to assess the efficacy of the therapist-facilitated NeW-I protocol and platform among a purposive sample of 66 participants. The findings generated will form the foundation for a full-scale RCT for advancing paediatric palliative care and parental bereavement support.
- Detailed Description
Background: Conventional grief support interventions for parents whose children are suffering from a chronic life-threatening illness often begin only after the child's death. Despite robust evidence which shows that pre-loss interventions that enhance death preparedness can alleviate psychological distress and prevent adverse grief outcomes among family caregivers of dying patients, there is no known program designed specifically to address the psycho-emotional-spiritual needs of parents facing child loss. And while the National Strategy for Palliative Care in Singapore aims to promote holistic end-of- life care services to patients and their caregivers, vast inadequacy continues to exist in the support provided to parents caring for a dying child in the local context.
Objective and Methods: A novel therapist-facilitated, online intervention is conceived to fill this critical service gap. Adopting an evidence-based approach, the research team has developed a strength-focused and meaning-oriented Narrative e-Writing Intervention (NeW-I) for parents anticipating the death of their child due to a chronic life-threatening condition. The design of NeW-I is informed by an existing body of research (i.e. international systematic review and local qualitative inquiry) that critically examines the lived experience of bereaved parents of children with life- limiting illnesses. NeW-I will be implemented in Singapore in collaboration with KK Women and Child's Hospital and Club Rainbow Singapore. A pilot Randomized Control Trial (RCT) with a built-in accessibility and feasibility study will examine the efficacy of the NeW-I therapeutic protocol for enhancing quality of life, spiritual wellbeing, hope and perceived social support, as well as reducing depressive symptoms, caregiver burden and anticipatory grief among a purposive sample of 66 participants.
Significance: NeW-I aspires to enhance quality of life, spiritual well-being, hope and sense of social support, as well as alleviating depressive symptoms, caregiving burden, and adverse grief outcomes among Singaporean parents facing the terminal illness and eventual death of their sick child. The findings generated will form the foundation of a full-scale RCT for advancing holistic paediatric palliative care and parental bereavement support locally and around the world.
Recruitment & Eligibility
- Status
- UNKNOWN
- Sex
- All
- Target Recruitment
- 66
- Mother or father whose child has been diagnosed with a chronic life-threatening illness between the ages of 0-19 years, with a prognosis of more than 3 months since time of study participation so as to ensure successfully completion of all intervention components before child's death.
- Able to speak, read and write in English, as well as to provide informed consent.
- Cannot provide informed consent
- Suffering from severely high levels of depressive symptoms, anxiety and psychological distress (i. e. score of 19 or higher on Patient Health Questionnaire-9 (PHQ-9) or score of 29 or higher on Kessler Psychological Distress Scale (K-10))
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- PARALLEL
- Arm && Interventions
Group Intervention Description NeW-I group NeW-I group Participants engage in a weekly structured writing task of 15-30 minutes which provides them an opportunity to reflect on the emotional, practical and financial demands of caregiving, and the means to cope with these challenges (week 1), explore avenues where they can seek information and resources for caregiving (week 2), explore the sources of support which they have within their network of family and friends (week 3) and examine how they (and their children) can rise above illness-related challenges and live their lives as fully as possible (week 4). After participants complete their weekly writing task, the written narrative will be reviewed and edited by the therapist within the next 3-4 days. The revised draft will be shared with the participant along with constructive feedback, empathic support and psychoeducation. In week 5, participants will receive a 'legacy' document and engage in a voice call with the therapist to receive psychosocial support and for closure of therapy.
- Primary Outcome Measures
Name Time Method Change in scores on Patient Health Questionnaire-9 (PHQ-9) from baseline Baseline, immediately after completion of the intervention/control protocol, one month post intervention/control protocol, three months post intervention/control protocol, six months post intervention/control protocol. The PHQ-9 is a 9-item self-administered and brief version of the PRIME-MD diagnostic instrument for common mental disorders; it is a reliable and valid clinical and research tool to assess severity of depressive symptoms (Kroenke, Spitzer, \& Williams, 2001).
Change in scores on Burden Scale for Family Caregivers-Short Version (BSFC-s) from baseline Baseline, immediately after completion of the intervention/control protocol, one month post intervention/control protocol, three months post intervention/control protocol, six months post intervention/control protocol. The BSFC-s is a 10-item economical instrument for assessing a caregiver's total subjective burden in a short time frame; it is considered an appropriate e outcome measure to evaluate caregiver interventions (Graessel, Berth, Lichte, \& Grau, 2014).
Change in scores on Kemp Quality of Life Scale (KQOL) from baseline Baseline, immediately after completion of the intervention/control protocol, one month post intervention/control protocol, three months post intervention/control protocol, six months post intervention/control protocol. The KQOL is a single-item easily administered, self-rated global measure of quality of life in adults (Siebens et al., 2015)
Change in scores on Herth Hope Index (HHI) from baseline Baseline, immediately after completion of the intervention/control protocol, one month post intervention/control protocol, three months post intervention/control protocol, six months post intervention/control protocol. The HHI is a 12-item adapted version of the Herth Hope Scale that is used in clinical settings to assess hope in adults, to assist in the planning and evaluation of effective hope-enhancing strategies (Herth, 1992).
Change in scores on Brief Grief Questionnaire (BGQ) from baseline Baseline, immediately after completion of the intervention/control protocol, one month post intervention/control protocol, three months post intervention/control protocol, six months post intervention/control protocol. The BGQ is a 5-item self-report instrument for screening complicated grief in clinical and non-clinical settings; it's validity and reliability has been evaluated on different samples including individuals from Asian countries (Ito et al., 2012; Shear, Jackson, Essock, Donahue, \& Felton, 2006).
Change in scores on Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp-12) from baseline Baseline, immediately after completion of the intervention/control protocol, one month post intervention/control protocol, three months post intervention/control protocol, six months post intervention/control protocol. The FACIT-Sp-12 is a 12-item questionnaire that examines the relationships between spiritual well-being, health, and adjustment to chronic illness; it has been successfully used to assess spiritual well-being across a wide range of religious traditions, including those who identify themselves as "spiritual yet not religious" (Bredle, Salsman, Debb, Arnold, \& Cella, 2011)
Change in scores on Inventory of Social Support (ISS) from baseline Baseline, immediately after completion of the intervention/control protocol, one month post intervention/control protocol, three months post intervention/control protocol, six months post intervention/control protocol. The ISS is a 5-item self-report questionnaire which assess an individuals's satisfaction with their available social support (Hogan \& Schmidt, 2002).
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (4)
KK Women's and Children's Hospital
🇸🇬Singapore, Singapore
Muscular Dystrophy Association Singapore
🇸🇬Singapore, Singapore
Rare Disorders Society Singapore
🇸🇬Singapore, Singapore
Club Rainbow Singapore
🇸🇬Singapore, Singapore