Developing a storybook package for bereaved siblings: a pilot study of the effectiveness for enhancing the perceived knowledge and confidence of health and social care professionals in Hong Kong

Abstract

A pilot randomized controlled trial was conducted to examine the effectiveness of a storybook package for enhancing the perceived knowledge and confidence of health and social care professionals in working with bereaved child siblings and their parents before and after the loss. Open-ended questions were asked to collect feedback, and thematic analyses were conducted to generate the themes. Quantitative findings provided preliminary but not strong evidence of its effectiveness, but qualitative findings showed that participants perceived their knowledge about supporting bereaved siblings and their parents was enhanced and considered the storybook package a useful tool for facilitating their practice. Participants also reflected on how real and specific the stories in the storybook should be. This study is the first step in developing an evidence-based practice tool for health and social care professionals. Future studies are required to further examine its effectiveness for practice.

Keywords:

• Sibling bereavement
• storybook
• Health and social care professionals
• childhood

Introduction

Experiencing a child’s death is difficult and challenging for a family (Polita et al., 2020; Vig et al., 2021; Zetumer et al., 2015). But the focus of the literature on the death of children has been mainly on the grief of bereaved parents (Field & Behrman, 2003; Kochen et al., 2020). Sibling bereavement has often received relatively less attention, and bereaved siblings are often regarded as forgotten (Davidson, 2018; Rostila et al., 2012). Despite this, previous studies showed that sibling bereavement in childhood may have immediate and long-term effects on the bereaved siblings, such as posttraumatic stress symptoms, negative emotional reactions, suicidal risk, and school problems (Alderfer et al., 2010; D’Alton et al., 2022; Rostila et al., 2013). Increasing concern was also put on how bereaved siblings’ coping may be affected by the grieving of parents, particularly the mother’s distress, following the death of a child in the family (Howard Sharp et al., 2020). In a broader context, it is acknowledged that sibling bereavement could be better understood from a family perspective: bereaved parents and siblings interact with each other in the course of bereavement (Breen et al., 2019; Søfting et al., 2016). Two recent qualitative studies of Lee (2022) and Chan, Leung et al. (2022) conducted in Hong Kong support this view. Lee (2022) interviewed five adults who experienced the death of siblings in childhood in Hong Kong. It was found that complicated family dynamics, such as changes in parenting styles and family roles following the death of siblings, may influence the long-term adjustment of the bereaved siblings. Chan, Leung et al. (2022) also reported that family interactions and dynamics play a big role in grieving among bereaved siblings aged 5–11. Findings revealed that bereaved parents may not be aware of their surviving children’s grief, and children (bereaved siblings) may intentionally hide their emotions to protect the grieving parents. Findings also showed that the coping strategies that should be adopted in coping with grief were greatly affected by their bereaved parents’ guidance (Chan, Leung, et al., 2022).

Communication about death, dying, and bereavement was reported to be essential for bereaved siblings (Warnick, 2015). A recent integrative review on sibling bereavement experience pointed out that bereaved siblings’ adjustment to loss may benefit from interventions that targeted the mother-child dyad, which may help improve communication. The findings of this review also revealed that bereaved siblings may adjust better if parents can communicate with them and involve them in the death and dying of their sick siblings, such as having a chance to say goodbye, being present at the time of death, and participating in death rituals (Ridley & Frache, 2020). Another study also emphasized the importance of communication, by showing that long-term anxiety in bereaved siblings may be due to insufficient communication, such as a lack of information about the siblings’ illness (Wallin et al., 2016). Originally, parents may be the persons who could communicate all this directly with their surviving children. Yet, bereaved parents may often be too emotionally distressed to effectively communicate death, dying, and bereavement with their surviving children. In fact, bereaved family members (father, mother, and sibling) may have their own grieving processes and bereavement needs in facing the death of a child in the family (Alam et al., 2012; Lövgren et al., 2019). As a result, bereaved parents and siblings may need support from health care and social care professionals who could help enhance communication about death, dying, and bereavement (Kenny et al., 2021; Warnick, 2015). Yet, this role cannot be performed well if the professionals do not have adequate knowledge about how bereaved parents and siblings could be better supported and what could support them (Steele et al., 2013; Thompson et al., 2011). In fact, health and social care professionals may often find their knowledge and experience inadequate and feel unconfident in helping families to engage with end-of-life discussions in pediatric palliative care. They believe they require more advanced skills (Chan et al., 2019). Health and social care professionals may perceive their work related to death and bereavement as emotionally and existentially challenging, such as breaking bad news to parents and end-of-life care planning. These challenges may affect their personal and professional well-being, and they may not feel competent to cope with them (Chan, Tin et al., 2016; Chan & Tin, 2012; Chan, Tin, et al., 2022).

Therefore, it is important to examine what can be done to support and equip health and social care professionals and how this can be done to help enhance their knowledge and confidence so as to facilitate their work in improving communication about death, dying, and bereavement in these families (Morris et al., 2016). The use of a storybook could be a tool to fulfill this purpose (Arruda-Colli et al., 2017). Storytelling is considered an effective means in assisting bereaved children to express their emotions and process their grief (Glazer & Marcum, 2003). Health and social care professionals may use it as a platform to support children in grief, such as bereaved child siblings. For example, during storytelling, bereaved siblings may learn coping skills and other responses to problems. Through the stories, they may become less isolated and find hope in learning how others have dealt with similar situations (Pehrsson, 2005). The availability of suitable storybooks to support bereaved siblings is often the key. In Arruda-Colli et al.’s review (2017), it was found that many of these storybooks focus on the death of grandparents and pets. Few books mention the experience of a child dying and the needs of children during the illness of their siblings. Many books involve animals as the main character, situated in a Western society, and often have spiritual elements like heaven to describe the afterlife. The availability of storybooks written in Chinese is even more limited, especially related to dying children and sibling bereavement. Therefore, there is a paramount need for developing an appropriate tool, such as a storybook package, to help health and social care professionals in Hong Kong to better support bereaved siblings in childhood and their parents, before and after the sibling’s death. This article thus aimed to describe how a storybook package was developed and, through a pilot study, examine the effectiveness of using this for enhancing the perceived knowledge and confidence of health and social care professionals in this kind of work.

Method

A two-arm pilot randomized controlled trial (RCT) was conducted in March 2022 to evaluate the effectiveness of using the storybook package for enhancing the perceived knowledge and confidence of health and social care professionals in working with bereaved siblings.

Participants

Participants were health and social care professionals who worked with bereaved siblings and their parents in Hong Kong. Inclusion criteria were: (1) Working with children with cancer and their families or working with bereaved siblings and their parents in the past year, and (2) ability to communicate in Cantonese. Exclusion criterion was: Those who were previously consulted in the development process of the storybook package. No incentive was provided to the participants. Ethical approval was obtained from the first author’s affiliated institution at the time this study was conducted.

Sampling and recruitment

Convenience sampling was used initially. Invitations to participate in this study were sent to health and social care professionals through the network of our research team. Participants who showed an interest in the research project were contacted by a research assistant (RA) by phone. A simple phone screening was conducted to determine participants’ eligibility to participate. Informed consent was obtained from participants prior to conducting the study. All enrolled participants were asked by the RA to complete the online pretest assessment via Qualtrics. After the completion of the pretest, randomization was performed by the first author via an online randomization generator. Participants were blinded on the group allocation and did not know whether they had joined the intervention or the control group.

Participants assigned to the intervention group received a storybook package (a storybook and a supplementary manual). Participants in the control group received a storybook only. All materials were delivered to the participants by mail by the RA. All were reminded by the RA to finish reading the materials within 7 days. After 7 days, the RA contacted the participants again to ensure they had completed the reading. They were then instructed to complete an online post-test within 7 days.

Intervention group

Participants in the intervention group are those who received the intervention: reading a storybook package developed by our research team, which includes a storybook and a supplementary manual. Development of this storybook package was conducted from 2020 to 2021. Details are as follows.

First, we examined the needs of bereaved siblings and their parents before and after the loss in Hong Kong via a qualitative study. Eleven bereaved siblings, aged 5–11, and their parents were interviewed. Family dynamics and interactions among bereaved siblings and their parents in different stages, from the illness of the siblings, death, to bereavement, were revealed in this study. Details of the research method and findings were reported in Chan, Leung et al. (2022) and were shared with health and social care professionals. Their feedback on the findings and their views on how they hope to be supported in working with bereaved siblings and their parents before and after their loss were collected. Six focus groups were conducted for this purpose. A total of 24 participants of various professions joined (including teachers of special schools, pediatric doctors and nurses, play therapists, social workers, and bereavement counselors) (Chan, 2020).

Based on our findings from the qualitative study and the focus group study, as well as the literature review, the research team (two social work academics whose expertise is in death and bereavement and children) and two experienced pediatric palliative care nurses developed the storybook package: a storybook and a supplementary manual.

The storybook aimed to address the various needs of bereaved siblings and their parents before and after their loss. The storyline describes how a sibling in middle childhood experienced the illness, dying, and death of his elder brother. These events formed the main content of the storybook. The supplementary manual aimed to provide health and social care professionals with further information and guidelines on topics that need to be addressed in working with bereaved siblings and their parents (see Table 1). For example, the story described the scene in which the mother told her son that his elder brother suffered from leukemia. Health and social care professionals may refer to the manual for additional information on how we may explain to children what cancer, particularly leukemia, is. Another example is the story described the scene in which the younger brother visited his elder brother with cancer for the first time in hospital. Health and social care professionals may refer to the suggested guidelines on how they may prepare the younger brother for the hospital visit, including how he may show care and support to the older brother. The main storybook and the supplementary manual were intended to be used together as a storybook package, which forms the intervention for this study. The final storybook package was confirmed after it was commented on by an expert panel of an experienced pediatric doctor, a bereavement counselor, and a social worker who also experienced the death of a sibling in childhood.

Table 1. Contents of the Storybook package.

Storybook c	Supplementary manual
Chapter 1: Introduction on the close relationship between the brothers
Chapter 2: Onset of elder brother’s illness; parents share the diagnosis (leukemia) with the younger sibling	Information on common types of childhood cancer; introduction of leukemia Information on medical checkup (e.g., pictures of X-ray machine and Magnetic Resonance Imaging) and treatment in the early stage of leukemia Body chart illustrating how cancer may affect organs and the metastases of cancer cells
Chapter 3: Worries and anxieties of the younger sibling during elder brother’s illness
Chapter 4: Elder brother’s physical deterioration; younger brother’s first hospital visit to his sick brother	Guidelines for preparing for the hospital visit Introduction of common medical equipment in hospital (e.g., pictures of patient-controlled analgesia, vital signs monitoring machine, and suction machine)
Chapter 5: End of life of elder brother; disclosure of death	Tips for helping young siblings in childhood to express their love of and support for the sick sibling Tips for preparation for and disclosure of death Tips for helping young siblings to express their feelings and convey their blessings to sick siblings in the last days before death Tips on explaining death to and supporting bereaved siblings in childhood Guidelines for preparing young siblings in childhood for attending the funeral
Chapter 6: Grieving the loss; changes in the family; different coping styles in the family	Highlights of the possible changes in the family following the loss, and the effects on bereaved child siblings Tips on maintaining continuing bonds and developing rituals for a memorial
Chapter 7: Living with grief but also valuable memories	Community resources for supporting bereaved siblings and their parents

Control group

Participants in the control group were given the storybook only but not the supplementary manual. The rationale is our emphasis on the use of the storybook with the supplementary manual. Thus we particularly hope to examine the effectiveness of using the storybook package (storybook with the supplementary manual) by comparing it with the use of the storybook only.

Pre- and post-questionnaire

Our research team developed a vignette that describes a 7-year old boy, Ming, who faced the onset of his elder sister’s life-threatening illness, the dying process, and her death (see Table 2). Participants were asked to read this case and put themselves in the role of a helping professional responsible for supporting this boy and his family. They were then invited to respond to 22 items developed by the research team to rate their perceived knowledge and confidence in working with Ming and his family. Twelve items were developed to assess perceived knowledge, and 10 items were developed to assess perceived confidence. Examples of questions for “knowledge” are “I know how to explain to Ming what leukemia is” and “I know about the potential changes that the family will have after the death of Ming’s sister.” Examples of questions for “confidence” include “I am confident about telling Ming that his sister is dying” and “I am confident about explaining to Ming that his sister died.” Participants were asked to rate their level of agreement with each question on a 4-point Likert scale (from 1 Strongly disagree to 4 Strongly agree). The vignette and self-developed items were piloted by four health and social care professionals who did not join the RCT study. Some wording was changed to enhance the clarity of items.

Table 2. Case scenario: Experiencing the illness, dying, and death of a sibling.

Profile	Details
Ming, aged 7, lives with his parents and his elder sister in Hong Kong	His sister was diagnosed with leukemia. She was always in and out of hospital for cancer treatment. Later, his sister’s physical condition deteriorated, and she died. Imagine you are a worker who is responsible for assisting this family and supporting Ming in facing this experience.

To obtain qualitative feedback from the participants, there are two open-ended questions at the end: “Please share your thoughts after reading the storybook/storybook with manual” and “What are your opinions about the use of the storybook/storybook with manual?”

Data analysis

All analyses were conducted by SPSS version 15. The demographic characteristics of the participants were analyzed descriptively. To examine whether the two groups showed significant differences in baseline demographic characteristics, Chi-square, Fisher exact test, and independent sample t-test were performed. The outcome changes in both the intervention and control groups were analyzed with repeated measure ANOVA. All statistical assumptions of ANOVA were checked and fulfilled prior to conducting the main analyses.

Responses given in the two open-ended questions, from both intervention and control groups, were combined and imported into Nvivo 14. They were analyzed by the first author and an RA using the 6 steps of the thematic analysis process defined by Braun and Clarke (2006). Findings were discussed and confirmed with the research team.

Findings

A total of 41 health and social care professionals were recruited, 21 assigned to the intervention group (reading the storybook and manual), and 20 assigned to the control group (reading the storybook only). Table 3 showed the demographic information of the participants. The majority were female (90%), with a mean age of 43; 58.5% were married, and 41.5% did not have a religious belief. Nurses and teachers in special schools constituted 29% of the samples, and social workers constituted the third highest percentage in the samples (24%). Our analyses indicated that participants from intervention and control groups showed no significant difference in any of the baseline demographic variables, p >.05 (Table 3).

Table 3. Demographic characteristics of participants (n = 41).

		Overall		Intervention group		Control group
		n	(Valid %)	n	(Valid %)	n	(Valid %)	p
Gender	Female	37	90.2	20	95.2	17	85	.269^a
	Male	4	9.8	1	4.8	3	15
Age-M (SD) (Range)		43.27 (9.23) (23–60)		41.62 (8.21) (25–57)		45 (10.12) (23–60)		.246^b
Marital Status	Single	16	39	5	23	11	55	.094^c
	Married	24	58.5	15	71.4	9	45
	Widow	1	2.4	1	4.8	0	0
Religious belief	No religion	17	41.5	9	42.9	8	40	.295^c
	Buddhism	4	9.8	0	0	4	20
	Catholicism	5	12.2	3	14.3	2	10
	Christianity	13	31.8	8	38.1	5	25
	Ancestor worship	2	4.9	1	4.8	1	5
								.48^c
Occupation	Doctor	6	14.6	4	19	2	10
	Nurse	12	29.3	6	28.6	6	30
	Special school teacher	12	29.3	1	4.8	2	10
	Occupational therapist	2	4.9	0	0	2	10
	Social worker	10	24.4	4	19	6	30
	Counselor	3	7.3	2	9.5	1	5
	Other (art/play therapist, chaplain)	5	12.2	4	19	1	5

^a Analyzed with Chi Square.

^b Analyzed with independent t-test.

^c Analyzed with Fisher’s Exact Test.

Effect of intervention on knowledge items (12 items)

The results of repeated measure ANOVA on the “knowledge” items were illustrated in Table 4. The results indicated that the score on item 9 (Knowing how to handle emotions that might appear at the funeral) differed significantly across two time points between the two groups, F(1, 40) = 8.15, p = .001, ηp² = 0.19. For the intervention group, there was a significant increase in the knowledge score of item 9 between pretest and posttest (pretest mean score: 2.78; posttest mean score: 3.32) when compared to the control group (pretest mean score: 2.78, posttest mean score: 2.82). Despite this, no significant interaction effect was found on the remaining 11 items of “knowledge” between the intervention group and the control group across the two time points (pretest and posttest), p >.05.

Table 4. Results of mixed ANOVA on self-perceived knowledge (n = 36).

	Between-group effect				Within-group effect				Time x-group effect
	df	F value	p value	Partial eta squared	df	F value	p value	Partial eta squared	df	F value	p value	Partial eta squared
Self-perceived knowledge
Q1. I know how to explain to him what leukemia is.	1.00	0.94	.76	0.003	1.00	2.78	.11	0.08	1	0.694	.411	0.02
Q2. I know how to psychologically prepare him before he visits his sister in the hospital.	1.00	1.76	.19	0.05	1.00	8.40	.01	0.20	1.00	0.07	.79	0.00
Q3. I know how to explain to him the treatment and medical equipment his sister is using (e.g., intravenous infusion pumps).	1.00	3.30	.08	0.09	1.00	17.41	.00	0.34	1.00	2.45	.13	0.07
Q4. I know how to help him to express love and concern to his sister during the illness.	1.00	0.34	.56	0.10	1.00	1.74	.20	0.05	1.00	1.74	.20	0.05
Q5. I know how to deliver the news that his sister is going to die soon.	1.00	0.21	.65	0.01	1.00	2.85	.10	0.08	1.00	0.11	.74	0.00
Q6. I know how to assist him in giving his blessings and expressing his feelings at the final stage before his sister dies.	1.00	0.23	.64	0.01	1.00	9.50	.00	0.22	1.00	2.93	.10	0.08
Q7. I know how to explain to him his sister died.	1.00	0.03	.86	0.00	1.00	1.45	.24	0.04	1.00	0.06	.81	0.00
Q8 I know what the possible emotions and reactions are when he attends his sister’s funeral.	1.00	0.04	.84	0.00	1.00	8.77	.01	0.21	1.00	0.11	.74	0.00
Q9. I know how to handle his emotions and reactions that might appear at his sister’s funeral.	1.00	1.74	.20	0.05	1.00	12.17	.00	0.26	1.00	8.15	.01	0.19
Q10. I know what changes might occur in the family after the death of his sister.	1.00	0.00	1.00	0.00	1.00	11.33	.00	0.25	1.00	0.00	1.00	0.00
Q11. I know how to assist the family in coping with the family changes caused by the sister’s death.	1.00	1.23	.27	0.04	1.00	23.741	.00	0.41	1.00	0.29	.59	0.01
Q12. I know how to give suggestions to his family regarding the memorial activities that they can do to grieve the deceased sister.	1.00	0.46	.50	0.01	1.00	8.56	.01	0.20	1.00	0.24	.63	0.01

The score of each question ranges from 1 to 4, a higher score indicating a higher level of agreement with the question.

Effect of intervention on confidence items (10 items)

The results of repeated measure ANOVA on the confidence items were illustrated in Table 5. They indicated that there was no significant interaction effect on all 10 items of “confidence” between the intervention group and the control group across the two time points (pretest and posttest), p >.05.

Table 5. Results of mixed ANOVA on confidence (n = 36).

	Between-group effect				Within-group effect				Time x-group effect
	df	f	p	Partial eta squared	df	f	p	Partial eta squared	df	f	p	Partial eta squared
Confidence
1. I am confident I can explain to him what leukemia is.	1.00	0.90	.77	0.00	1.00	1.77	.19	0.05	1.00	3.97	.05	0.11
2. I am confident about how to psychologically prepare him before he visits his sister in the hospital.	1.00	0.159	.69	0.01	1.00	11.77	.00	0.26	1.00	1.31	.26	0.04
3. I am confident about explaining to him the treatment and medical equipment his sister is using (e.g., intravenous infusion pumps).	1.00	0.87	.36	0.03	1.00	29.36	.00	0.46	1.00	3.99	.05	0.11
4. I am confident I can assist him in expressing love and concern to his sister during the illness.	1.00	0.842	.37	0.02	1.00	5.17	.03	0.13	1.00	2.640	.11	0.07
5. I am confident about how to deliver the news that his sister is going to die soon.	1.00	0.25	.62	0.01	1.00	13.00	.00	0.27	1.00	0.08	.78	0.00
6. I am confident about how to help him to give his blessings and express his feelings at the final stage before his sister dies.	1.00	0.99	.33	0.03	1.00	4.95	.03	0.13	1.00	0.00	1.00	0.00
7. I am confident I can explain to him that his sister has died.	1.00	3.37	.08	0.90	1.00	2.96	.09	0.08	1.00	0.06	.81	0.00
8. I am confident about how to handle his emotions and reactions that might appear at his sister’s funeral.	1.00	1.28	.27	0.04	1.00	6.12	.02	0.15	1.00	0.68	.42	0.20
9. I am confident about assisting the family in coping with the family changes caused by the sister’s death.	1.00	0.27	.61	0.01	1.00	4.64	.04	0.12	1.00	0.52	.48	0.02
10. I am confident about giving suggestions to his family regarding the memorial activities that they can do to grieve the deceased sister.	1.00	3.77	.60	0.10	1.00	13.00	.00	0.28	1.00	0.08	.78	0.00

The score of each question ranges from 1 to 4, a higher score indicating a higher level of agreement with the question.

Further analyses using t-test

Since ANOVA analyses showed non-significant improvement in the majority of outcomes in the intervention group when compared with the control group, further analyses using the t-test were conducted to examine the pre- and post-changes in perceived knowledge and confidence in different items separately for the intervention group and the control group respectively. Significant improvement was found in 5 “knowledge” items for the intervention group but only in 2 “knowledge” items for the control group (see Table 6). Similarly, significant improvement in confidence was found in 6 items for the intervention group, whereas only 1 item indicated significant improvement for the control group (Table 7).

Table 6. Results of paired t-test comparing self-perceived knowledge before and after the workshop (n = 36).

	Intervention group (n = 18)							Control group (n = 18)
	Pretest score		Posttest score					Pretest score		Posttest score
	M	(SD)	M	(SD)	df	t	p	M	(SD)	M	(SD)	df	t	p
Knowledge
Q1. I know how to explain to him what leukemia is.	3.06	(0.54)	3.22	(0.55)	17.00	−1.844	.083	3.06	(0.54)	3.11	(0.68)	17.00	−0.57	.58
Q2 I know how to psychologically prepare him before he visits his sister in the hospital.	3.06	(0.54)	3.33	(0.59)	17.00	−1.761	.96	2.83	(0.62)	3.17	(0.38)	17.00	−2.38	.03
Q3. I know how to explain to him the treatment and medical equipment that his sister is using (e.g., intravenous infusion pumps).	2.83	(0.62)	3.44	(0.51)	17.00	−4.267	.00	2.61	(0.85)	2.89	(0.83)	17.00	−1.761	.10
Q4 I know how to assist him in expressing love and concern to his sister during the illness.	3.17	(0.51)	3.44	(0.62)	17.00	−1.567	.14	3.22	(0.43)	3.22	(0.55)	17.00	0.00	1.00
Q5. I know how to deliver the news that his sister is going to die soon.	2.89	(0.58)	3.06	(0.54)	17.00	−1.844	.83	2.83	(0.62)	2.94	(0.64)	17.00	−0.809	.43
Q6. I know how to help him to give his blessings and express his feelings at the final stage before his sister dies.	2.94	(0.64)	3.33	(0.59)	17.00	−3.29	.00	3.00	(0.59)	3.11	(0.47)	17.00	−1.00	.33
Q7. I know how to explain to him his sister has died.	3.00	(0.59)	3.11	(0.58)	17.00	−0.809	.43	2.94	(0.64)	3.11	(0.47)	17.00	−0.900	.38
Q8 I know what the possible emotions and reactions are when he attends his sister’s funeral.	3.06	(0.42)	3.33	(0.49)	17.00	−2.557	.20	3.06	(0.54)	3.28	(0.46)	17.00	−1.719	.10
Q9. I know how to handle his emotions and reactions that might appear at his sister’s funeral.	2.78	(0.65)	3.33	(0.59)	17.00	−4.610	.00	2.78	(0.55)	2.83	(0.71)	17.00	−0.437	.67
Q10. I know what changes might occur in the family after the death of his sister.	3.06	(0.64)	3.39	(0.50)	17.00	−2.38	.29	3.06	(0.42)	3.39	(0.50)	17.00	−2.380	.29
Q11. I know how to assist the family in coping with the family changes caused by the sister’s death.	2.67	(0.59)	3.11	(0.47)	17.00	−3.06	.01	2.44	(0.51)	3.00	(0.59)	17.00	−3.83	.00
Q12. I know how to give suggestions to his family regarding the memorial activities that they can do to grieve the deceased sister.	3.00	0.59	3.39	0.61	17.00	−3.29	.00	2.94	0.54	3.22	(0.65)	17.00	−1.426	.17

The score of each question ranges from 1 to 4, a higher score indicating a higher level of agreement with the question.

Five participants failed to complete the posttest, so the above analyses were based on complete data of the pretest and the posttest.

Table 7. Results of paired t-test comparing health care professionals’ confidence before and after the workshop (n = 36).

	Intervention group (n = 18)							Control group (n = 18)
	Pretest score		Post-test score					Pretest score		Post-test score
	M	(SD)	M	(SD)	df	t	p	M	(SD)	M	(SD)	df	t	p
Confidence
1. I am confident about explaining to him what leukemia is	2.83	(0.62)	3.11	(0.58)	17.00	−2.56	.20	3.06	(0.54)	3.00	(0.69)	17.00	0.44	.67
2. I have confidence about how to psychologically prepare him before he visits his sister in the hospital	2.38	(0.62)	3.28	(0.57)	17.00	−3.06	.01	2.89	(0.47)	3.11	(0.32)	17.00	−1.719	.10
3. I have confidence about explaining the treatment and medical equipment that his sister is using (e.g., intravenous infusion pumps)	2.67	(0.59)	3.39	(0.50)	17.00	−6.65	.00	2.67	(0.84)	3.00	(0.77)	17.00	−2.06	.06
4. I have confidence about how to assist him to express love and concern to his sister during the illness	3.11	(0.47)	3.44	(0.62)	17.00	−2.38	.29	3.11	(0.47)	3.17	(0.51)	17.00	−0.566	.58
5. I have confidence about delivering the news that his sister is going to die soon.	2.72	(0.67)	3.11	(0.58)	17.00	−2.72	.02	2.67	(0.59)	3.00	(0.49)	17.00	−2.38	.03
6. I have confidence about assisting him to give his blessings and express his feelings at the final stage before his sister dies.	3.11	(0.58)	3.33	(0.69)	17.00	−1.72	.10	2.94	(0.54)	3.17	(0.51)	17.00	−1.46	.16
7. I have confidence about explaining to him that his sister has died.	3.06	(0.54)	3.22	(0.65)	17.00	−1.00	.33	2.78	(0.43)	3.00	(0.11)	17.00	−1.46	.16
8. I have confidence about handling his emotions and reactions that might appear at his sister’s funeral.	2.83	(0.71)	3.17	(0.62)	17.00	−2.38	.03	2.72	(0.46)	2.89	(0.58)	17.00	−1.14	.27
9. I have confidence about assisting the family about how to cope with the family changes caused by the sister’s death.	2.72	(0.67)	3.06	(0.54)	17.00	−2.38	.03	2.72	(0.58)	2.89	(0.58)	17.00	−.900	.38
10. I have confidence about giving suggestions to his family regarding the memorial activities that they can do to grieve the deceased sister.	3.11	(0.68)	3.50	(0.51)	17.00	'-3.29	.00	2.83	(0.38)	3.17	(0.62)	17.00	−2.06	.06

Remarks: The score of each question ranges from 1 to 4, a higher score indicating a higher level of agreement with the question.

Five participants failed to complete the posttest, so the above analyses were based on complete data of the pretest and the posttest.

Findings for the thematic analyses

Overall, 76% (N = 32) of all participants from both intervention and control groups responded to the two open-ended questions that obtained their thoughts and feedback on reading and using the materials. Three themes were identified, which include both positive feedback and suggestions for improvement.

Enhanced understanding of bereaved siblings and their parents

Participants mentioned that the first-person narrated storyline from a child sibling, the description of scenes, and the pictures in the storybook all facilitated their deeper immersion in the situation and enhanced their understanding of and empathy toward bereaved siblings and their parents. Participants highlighted the importance of this enhanced understanding for their future clinical work with these families.

For example, one participant said the information in the supplementary manual provided her with an opportunity to immerse herself in the situation and reflect on how she might handle it:

The supplementary manual allows me to better immerse myself in the situation (such as how I will act, and express myself if I am in the same situation) and understand the intentions of the parents. (P014, a chaplain from the intervention group)

Another participant emphasized how the storybook helped her to understand the experience of bereaved siblings and their parents, which may enhance her confidence in working with these families.

While reading, I can empathize with the experiences. The book helps me understand the thoughts and feelings of the siblings of the sick child, which are not as complex as I imagined, and it deepens my understanding of what they think and feel. (P033, a nurse from the intervention group)

Utilizing the storybook intervention package as a valuable tool in practice

Participants highly appreciated the supplementary manual, which they considered a valuable resource to support the child siblings and their parents who have to face the illness, dying, and death of the sick siblings. They said that the manual offered them clear guidance on explaining the illness, describing medical equipment to children, and providing strategies for addressing children’s questions, which in turn enhance their capacity to work with these families.

One participant said:

This package enables me to better grasp the techniques for addressing a child’s experience of losing a sibling. The manual can be used with the storytelling with the child, providing a clear explanation of medical equipment and conditions concisely. (P043, a nurse from the intervention group)

Another participant shared that both the storybook and the supplementary manual are useful and served two distinctive functions:

I appreciate the helpful explanation provided in the supplementary manual. It gives clear explanations of how to communicate with children about that, while the storybook itself makes it easy for me to understand what they are going through. (P033, a nurse from the intervention group)

How real and specific the story should be

Participants often used the terms “well-portrayed” and “well-illustrated” to describe the storybook and the supplementary manual. They appreciated that the real-life storyline helped reveal the journey of a child sibling who experienced the onset of the sick sibling’s illness, dying, and death, as well as the bereavement. They also said the storybook depicts the complicated emotions throughout this journey.

For example, one participant said:

Excellent book… I particularly like the way many different emotions are conveyed and the thoughts going through the child’s mind, as this was what we observed in our cases. (P002, a social worker from the control group)

The same participant also mentioned: “Each chapter illustrates the various stages of the sick children, providing insight into what the patient’s family might be experiencing in this terminal situation.”

But some participants also pointed out that the specific storyline may not suit other situations, and how specific the story should be may become an issue. For example, one participant mentioned:

It focused on leukemia, and I wonder if there is room to incorporate some more general information. (P003, a doctor from the intervention group)

Another participant also stated:

Alternatively, if there is another sibling of a different age in the same family, they may have different feelings and behaviors due to their age differences, and the entire family will interact in a different way. (P030, a social worker from the control group)

Alternatively, one participant wondered if the positive example illustrated in the story could reflect reality and asked if that would create a false expectation:

For example, in public hematologic chemotherapy facilities, wards are often isolated where children are not allowed to visit. In reality, parents are exhausted and find it challenging to arrange for their children to visit. Therefore, the portrayal of numerous interactions between the child sibling and his sick brother in hospital in the story may create false expectations. (P024, an art therapist from the intervention group)

Two participants shared their worries about illustrating a story which could be too “real” and “overwhelming.” For example, one participant wondered if the contents of a storybook should not be too real, so as to leave room and distance for children to explore and digest:

The contents are directly described…depicting the whole reality. A storybook should aim to make use of the metaphors and imagination to provide children a secure and appropriate space to explore the feelings, not necessarily putting them directly into the context. This storybook is direct, and I wonder if children can cope with it. (P024, an art therapist from the intervention group)

This participant further queried if the storybook package offered adequate space for the children to imagine and explore to fit their unique situations:

The story plot is too real and detailed, and the whole book is full of information and suggestions… I wonder if we can find enough space to guide children to imagine and link the story to themselves.

Discussion

This study illustrates the development of a storybook package that aimed to facilitate health and social care professionals work with bereaved child siblings and explored the preliminary effectiveness of using this package. A previous review suggests that many interventions for bereaved child siblings have not been published, and those published may not be evidence-based and lack professional input (Ridley & Frache, 2020). Our work attempted to enrich the literature by showing the way an intervention for supporting siblings of patients with life-threatening illness, such as cancer and bereaved siblings could be developed with reference to the research evidence built on our previous studies with bereaved child siblings and their parents, as well as health and social care professionals who may work with them.

A few key features of this storybook package are worth highlighting. First, the package was developed not for the children’s own reading. Instead, it was developed as a tool that aimed to facilitate health and social care professionals’ work with siblings of patients with life-threatening illness, bereaved siblings, and their parents. Therefore, the intervention examined in this study refers to the health and social care professionals’ use of the whole package. It is hoped that the storytelling of the main book can be coupled with the supplementary manual to provide optimal therapeutic effects. Second, this storybook has taken the first-person perspective: illustrating the experience directly from the angle of a child sibling. Unlike some of the other storybooks that may use animals as the main characters, our storybook aimed to illustrate a real-life experience from the perspective of a child sibling. Third, the storybook does not just highlight grief and bereavement. Instead, we aimed to illustrate the whole journey: the onset of the elder brother’s illness, hospitalization, dying, and death, as well as grief and bereavement. Previous studies often focus on the adjustment to loss and the effect of death on the surving sibling(s) only (D’Alton et al., 2022; Rostila et al., 2012). Our storybook highlights the importance of supporting a surviving sibling in coping with the illlness of the sibling before death, such as preparing for the hospital visit and faciliating the expression of end-of-life support (Chan, Leung et al., 2022).

We believe that reading the storybook package that we developed may help prepare health and social care professionals to work with siblings of patients with life-threatening illness, bereaved siblings, and their parents. This includes enhancing their knowledge and confidence in working in various aspects, such as knowing how to explain the death of the sibling to the bereaved sibling and handle the emotions and reactions of the bereaved sibling that may appear when attending the funeral. Therefore, we proposed a vignette in which a health and social care professional needs to support a surviving child sibling and the parents, and hypothesized that, when compared with reading the storybook only (control group), reading the whole story package, the storybook and the supplementary manual (intervention group), would bring significant improvement in the outcomes of knowledge and confidence among the participants. Our findings of the RCT, however, did not support this hypothesis in general. The interaction effect between groups and time was found significant only in one item, indicating that when compared with the control group, participants showed a significant improvement in knowing how to handle the emotions and reactions that might appear in attending the funeral. To further understand these findings, a t-test was conducted to examine the pre- and post changes in both intervention and control groups. A significant increase was found in 5 knowledge items and 6 confidence items in the intervention group, but a significant increase was found in only 2 knowledge items and 1 confidence item in the control group.

Given all these findings, it seems that reading the storybook package may still help to enhance the knowledge and confidence of health and social care professionals in working with bereaved siblings and their parents, but the positive effects may not be significant when compared with reading the storybook only. There may be several reasons. One is that reading the storybook itself may have a positive effect on the perceived knowledge and confidence items though the small sample size may lead to insignificant changes in many items in the t-test. This may explain why significant interaction effects between groups and times were not found in most of the items in the ANOVA test when we compared the effects between the intervention and control groups. Our interpretation is supported by the qualitative findings in which participants from both groups may share positive feedback, but it seems that the storybook itself and the storybook package served different purposes. The storybook may help enhance the understanding of siblings of patients with life-threatening illness and bereaved siblings, as well as the empathy toward their experience, but the storybook package may provide more comprehensive guidance to health and social care professionals. Another reason for the insignificant results may be related to the small sample size, and thus though positive changes were shown between the pre- and post-scores in the intervention group, the improvement cannot reach a statistically significant level. Future studies that compare the use of the storybook package and a control group with no additional input with a large sample may examine the effectiveness of this intervention more throroughly.

The themes identified from the qualitative findings provide encouraging feedback on the use of a storybook package for working with siblings of patients with life-threatening illness, bereaved siblings, and their parents. It seems that the storybook package can help enhance the understanding of health and social care professionals in their support needs in different stages, from the onset of illness of the sick siblings to death and bereavement. Our findings suggest that our original aim of developing this storybook package as a tool that may support the practice of health and social care professionals seems to be achieved. Yet, future studies are required to examine the actual experience of making use of this storybook package in practice. It would be valuable to listen to the feedback of health and social care professionals after they used this storybook package, both pros and cons. This feedback could provide important insights that could be used to enhance the meaningfulness and utility of the storybook package in future practice.

The theme of “How real and specific the story should be” also provides a lot of reflection. Despite some participants finding the risk of developing a storybook that is too close to real life and providing a lot of information and suggestions on showing support and coping, our research team considers these to be also the characteristics of this storybook package and in fact something that we planned to develop. This storybook package aimed to create an open atmosphere for talking about death, dying, and bereavement directly and providing guidance to facilitate the work of health and social care professionals. To reflect on these comments, we suggest providing clearer guidance on using the storybook package: (1) Specify that this storybook is not designed for children to read by themselves. Instead, the storybook package should be considered a tool for health and social care professionals to work with child siblings who are facing the death and dying of a sick sibling. (2) Highlight the importance of exploring the contents of this storybook package according to the readiness and pacing of each child sibling. In fact, we trust that the health and social care professionals are aware of this and will not overwhelm the children service users. (3) Highlight the importance of being open to exploring the different experiences and coping strategies among child siblings. The contents of the storybook package may just offer some tips for working with them and are not meant to be the only way of responding and coping. Alternatively, we are also reflective of the readiness of health and social care professionals to discuss death and bereavement directly with the child siblings (Chan et al., 2019). To go through a close to the real-life story in this storybook package with children may also require health and social care professionals’ competence in coping with personal challenges from their work, e.g., coping with their own emotions in facing death, and the existential queries of suffering (Chan & Tin, 2012; Chan et al., 2015; Gamino & Ritter, 2012). Therefore, future studies may also explore the readiness of health and social care professionals in using this storybook package and how this may affect their use and perception of the contents.

Limitations

This is only a pilot study to examine the effectiveness of our storybook package, and therefore only the self-perceived knowledge and confidence in working with the bereaved siblings and their parents were chosen as the outcomes. It is important if future studies examine the effectiveness of using this storybook package for enhancing the adjustment of bereaved siblings prior to and following the loss. Our participants were recruited by convenience sampling via our team’s network in this study, and this may have limited the representativeness of our samples and the generalizability of our findings. As mentioned, the small sample size may have limited the power of detecting significant changes in the intervention group, and a future study using a larger sample may help explore the effectiveness of the intervention. Our qualitative findings were limited to the responses to two open-ended questions and may not reflect thoroughly the experience of using the storybook package. Future studies may be conducted to examine the experience of health and social care professionals in using this storybook package for working with bereaved siblings.

Conclusion

This study illustrates how a storybook package—the main storybook and a supplementary manual—was developed that aimed to facilitate health and social care professionals working with child siblings who are facing the illness, dying, and death of their sick siblings. A pilot test was subsequently conducted to examine the effectiveness of using this storybook for the perceived knowledge and confidence in this kind of work among health and social care professionals. The preliminary evidence is encouraging and suggests that this storybook package may serve as a tool that could be of help. However, future studies are required to further prove the effectiveness for enhancing the adjustment of bereaved siblings prior to and following the loss. This study takes the first step in developing an evidence-informed tool for health and social care professionals, such as palliative care professionals who often work with children with life-threatening illness and their families.

Disclosure statement

No conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by a private donation from the Jetta Company Limited.