Responding to the psychological needs of children following admission to paediatric Intensive Care for paediatric inflammatory multisystem syndrome: A Narrative Therapy based Photography Workshop

Abstract

This article briefly describes the development of a novel narrative therapy-based photography workshop group for children following acute hospital admission for Paediatric Inflammatory Multisystem Syndrome temporally associated with SARS-CoV-2 (PIMS-TS). The workshop was a collaboration between the psychology team, an artist and the medical multi-disciplinary team (MDT) to develop a group during the COVID-19 pandemic. The aims were to reduce isolation and promote resilience and psychological recovery post discharge from hospital. Nine children aged 8–11 years joined the photography group. Parents (n = 8) and children (n = 8) provided feedback on the group through semi-structured telephone interviews. Thematic analysis of the interviews identified three narrative themes for parents: reducing isolation through shared experience, creative activity as a different experience of hospital, and the positive sharing of experiences after the day. The resulting narrative themes for the children included that the workshop was a fun and interactive day and an opportunity to share in hospital experience with peers.

Keywords

paediatric inflammatory multisystem syndrome Narrative therapy Paediatric psychology post-traumatic stress disorder multisystem inflammatory syndrome in children

Introduction

At the time of this study PIMS-TS (also called Multisystem Inflammatory Syndrome in Children (MIS-C)) was a new and rare condition affecting children and young people (CYP) weeks after having had COVID-19 infection (Penner et al., 2021). At that time children with PIMS-TS often required admission to the paediatric intensive care unit (PICU) due to systemic inflammation with single or multi-organ dysfunction (RCPCH, 2020). These children typically had no pre-existing health conditions and became suddenly unwell, before being admitted to hospital and then transferred to a specialist PICU. Most of the children affected were aged 9–16 years of age and were disproportionately from ethnic minority backgrounds (White et al., 2020). These admissions were happening at time of COVID-19 pandemic restrictions, which meant professionals were wearing personal protecting equipment (PPE) including masks, gowns and visors and hospital visitor restrictions were in place. It is also of note that many children with PIMS-TS were awake for the majority of their PICU admission, which is relatively unusual for the PICU admissions. Furthermore, many of the children were discharged home with ongoing symptoms affecting their return to school and everyday activity (see Penner et al., 2021 and White et al., 2020 for further information).

PIMS-TS Multi-Disciplinary Team (MDT) clinics were established in a response to support children with their recovery and rehabilitation, and offered MDT follow up at 2 week, 6 weeks and 6-monthly post discharge time points (Penner et al., 2021). Specialist paediatric psychology support was available both during the acute admission and at any point in the families PIMS-TS follow up. This included an integrated psychology review as part of their 6-week post discharge PIMS-TS clinic visit, incorporating screening measures for child emotional distress (Paediatric Index for Emotional Distress; PI-ED, O‘Connor et al., 2016) and psychological trauma (Child Revised Impact of Events Scale; CRIES, Perrin, S., Meiser-Stedman & Smith, 2005), and parent psychological trauma (Impact of Event Scale Revised; IES-R, Weiss & Marmar, 1996). The results revealed that nearly one in four of the children had a high probability for Post-Traumatic Stress Disorder (PTSD) and 15% were experiencing symptoms of anxiety and/or depression (Freeman, Hatton, et al., 2021). For the parents, 35% met the threshold for clinical concern on PTSD screening measure, with 23% scoring in the range for a likely diagnosis of PTSD (Freeman et al., 2021). PICU admissions and a child’s experience of needing critical care has been associated with negative psychological sequalae for children (Rennick & Rashotte, 2009) which includes an elevated risk of low mood and PTSD (Als et al., 2015; Rees, et al., 2004). There are many factors that have been associated to increased likelihood of emotional distress and PTSD for parent and child following a PICU admission, including: the subjective experiences of the illness or event, a perceived life threat, social withdrawal (Trickey et al., 2012); helplessness (Kazak et al., 2003); uncertainty during hospital admission and opportunities for self-blame or a sense of responsibility (Franck, et al., 2015). Children who have been admitted to PICU continue to be at risk of psychological distress and PTSD during and after their admission and may benefit from psychological monitoring up to 12-months post discharge with preventative psychological interventions available (Colville & Peirce, 2012). As of yet, there is no clear evidence of the best psychological approaches for post PICU preventative trauma interventions, but there has been support for interventions designed to promote child and parent communication, or developmentally appropriate story books related to the child’s admission (Colville & Peirce, 2012).

These risk factors for PICU populations were present for the PIMS-TS families, who experienced having a previously well child deteriorate rapidly and need critical care and multiple medical interventions (White et al. 2020). In addition these families were admitted in the context of the COVID-19 pandemic and social restrictions, at a time there was uncertainty regarding short and long term outcomes of a PIMS-TS diagnosis. The isolation in their diagnosis, due to being a novel condition with little public awareness at that time was a risk for children internalising their experience, whilst also potentially experiencing stigma or shame related to the public narrative of COVID-19 as an infectious disease (Meade, 2021). The PIMS-TS psychological reviews identified themes of isolation and an experience of uncertainty and a need to address the emotional sequelae in a culturally and socially relevant and accessible way (Freeman, Hatton, et al., 2021). Due to the pandemic restrictions and the relative rarity of the condition, children and their families had not been able to meet others with PIMS-TS, and for some this meant they had little opportunity to talk about their experience of illness or hospital.

As a paediatric psychology service, the importance of taking a family perspective to medical trauma, considering a child is embedded within their family is known (Kazak et al., 2003), and therefore a systemic approach was indicated. It was also essential to consider the higher prevalence of CYP from ethnic minority backgrounds in the PIMS-TS population and the potential stigmatising of psychological distress. Traditional one-to-one psychological therapy approaches can be rejected by children and families in paediatric settings, as implying the ‘problem’ is located in the person or family rather than an expression of distress in the context of a child’s illness (Casdagli et al., 2017). There was therefore an imminent need to offer a narrative and trauma-informed intervention where CYP could meet and explore their experiences with others who had had PIMS-TS in a safe and non-stigmatising way.

Narrative-therapy based group approaches have been used in paediatric chronic health populations, such as for young people with diabetes (Casdagli et al., 2017) and paediatric oncology (Portnoy et al., 2016). The narrative therapy-based Tree of Life (TOL) group was developed for patient populations from ‘non-western cultural’ groups (Ncube, 2006). This group approach has been considered to allow for more systemic family focus and cultural adaptations, providing an alternative to the more traditional individualistic cognitive and behavioural approaches (Hughes, 2014). Evaluation of TOL groups with children with diabetes has identified outcomes for young people; moving from isolation to inclusion, being able to share experiences and build more positive ideas of self (Portnoy et al., 2016). TOL groups are best applied to chronic or long-term health conditions, and adaptations were needed for this PIMS-TS post-acute hospital admission group (Portnoy et al., 2016). A narrative therapy-based photography art group, based on TOL principles and previously described by Freeman (2020) for perinatal paediatric HIV population was a way of engaging children in narrative, sharing stories in a non-stigmatising way. Freeman (2020) group enabled the young people to utilise portrait photography to develop and share new narratives about living with HIV now and in the future. This was a novel use of photography art and narrative therapy with a paediatric population. However, there are emerging accounts of arts based narrative approaches, as described by Epp (2013) and Linnell (2010), and more recently an example of photography being utilised as a therapeutic tool in narrative based psychological interventions described by Jimenez-Alonso and Bresco de Luna (2021). The authors adapted Freeman (2020) photography art and narrative therapy collaboration for children with PIMS-TS, as a response to the identified traumatic measure of psychological trauma and to reduce isolation and promote resilience in recovery.

Methodology

The objectives of the photography workshop group were:

1. To promote resilience post PIMS-TS admission and diagnosis. Reducing children and family’s sense of isolation related to their hospital experience and PIMS-TS diagnosis through peer support.

2. To Provide a safe space for children to share their experiences of being in hospital and PIMS-TS diagnosis, with a focus on their shared recovery and hope stories.

Group Participants

Children (aged 8–13 years) were identified to be invited to the photography workshop group through their 6-week routine psychology review or by referral by their PIMS-TS MDT for psychological support relating to their admission or PIMS-TS diagnosis. All had expressed an interest in joining a one-off peer group when asked. Due to the COVID-19 pandemic context the group was confirmed 2-weeks prior to the date.

The group was attended by children that had been admitted for PIMS-TS treatment between Dec 2020 and March 2021 and were being followed up by the PIMS-TS MDT. At the time of the group the children were between 5 to 8 months post admission for PIMS-TS.

A total of 17 children were invited with a maximum of 10 places offered. The seven families that declined the offer to join were largely due to the date not being possible for the family. Nine children joined the group (one not able to join on the day). The children were aged 8–13 years (average 9.5-years), six females and three males. All of the children lived in London or Southeast England. Six of the children identified as black African or mixed black African, two as Asian or mixed Asian and one as white.

Photography Workshop

The children’s photography workshop group was developed with narrative therapy principles, based on the TOL (Ncube, 2006) and Beads of Life (Portnoy, et al., 2016) groups, which had been developed for paediatric patient groups. This approach was selected as it offered an opportunity for adaptation to arts based creative engagement, was non-stigmatising and potentially culturally relevant to the PIMS-TS patient population. A similar adaptation had been developed as part of a photography arts project with another paediatric population (Freeman, 2020).

The main therapeutic principles that underlined the group were:

1. Provide opportunities for exploring PIMS-TS and hospital stories from the children’s perspective without privileging the illness story.

2. Engage children through creative activity and photography that is fun and interactive and supports opportunities to witness other’s stories and images.

3. Encourage sharing of experiences outside the group by producing objects, images and stories of shared experiences to take home and share with friends and family.

4. Provide a safe setting away from hospital to enable the children to join without risk of re-traumatising.

5. Encourage collective review, retelling and witnessing of the group’s stories and photographs through an online follow-up group and public photography exhibition.

The group was jointly facilitated by a clinical psychologist from the paediatric psychology team and the photography artist Marysa Dowling. Witha paediatrician and psychologists from the children PIMS-TS MDT joining to support the facilitation. The hospital charity arts team were involved in the planning and provided funding for the artist, venue and materials including a subsequent hospital photo exhibition and photo book for the participants.

The group was offered as a one-off day that could be attended by up to 10 patients from the PIMS-TS clinic, aged 8–13 years. The group took place in person (as opposed to video) as children had been surveyed and identified this as key factors that would enable them to access this group. However, parents were not present at any part of the day due to COVID-19 pandemic infection control restrictions. In line with trauma-informed principles the workshop was held in a safe space, outside of the hospital, in a gallery. The focus of the photography activity was to identify children’s positive stories of coping and ways of responding to PIMS-TS. The focus was on privileging the non-medical narrative to move away from stories of ‘illness’, ‘infections’, and ‘isolation’ of PIMS-TS towards stories of strength, recovery, and resilience.

The day included psychologist and artist-led activities using craft materials to make a gift for someone who had helped them or supported them with their hospital journey and was followed by portrait photography activities in small groups. The activities encouraged the CYP to share and represent stories of their recovery and identity. The facilitators supported the children to develop ideas for their photos and the stories they wanted to tell. At the end of the day the children came together to celebrate and receive certificates and photographs to take home and share with family, along with the objects they had made.

It was important, despite COVID infection control restrictions, that there was a possibility to have these photography stories witnessed by families, friends and PIMS-TS MDT. Ordinarily parents and MDT would have been invited to join the end of day. Instead, a crucial part of the group was an exhibition of the photographs in the hospital, and the printing of a photography story book for each participant and facilitators to share and witness the children’s recovery stories.

The photography day was followed by a one-off online session that allowed for a collective review of the photographs, and opportunity for sharing memories and what was taken away from the day. This was facilitated by members of the psychology team, the CYP nurse specialist and the artist and was attended by six of the participants. The children were also asked to share an object from their home that was significant to them in the last year or had helped them in their own hospital journey. They also told stories from their workshop day and how they had shared these experiences with friends and family since that day.

The final stage of the group was the hospital photography exhibition, that displayed a collection of the children’s portrait photographs from the day. This provided a way to invite parents, families, the medical team and the public to witness and share the children’s experience through the photography images. The young people and facilitators on the day, and those visiting the exhibition act as ‘outsider witnesses’ in a role of actively acknowledge the person’s preferred story told through their shared storytelling on the day and through their photography story on exhibition (Carey & Russell, 2003).

Sharing of photography

On the day of the group all parents provided written consent to the sharing and publication of photography from the day. This consent was reconfirmed with all CYP and a parent after the day, including consent to include photographs in a shared book for each CYP and to display in the hospital as part of a temporary photography exhibition. All conversations were recorded on the CYP medical records. Figures 1 –4 provide an illustration of the activity on the day and tell a visual story to support the narrative feedback from children and parents accounts provided below.

Figure 1.

Young person portrait.

Figure 2.

Photography workshop day.

Figure 3.

Portrait of young person’s gift.

Figure 4.

Young Persons gift from the day.

Evaluation of the group

To evaluate the group, a member of psychology team contacted the parent and child individually by telephone 3–4 weeks after the photography day to ask open questions (see appendix 1) about their and their child’s experience of the group. They were able to interview all of the parents and eight of the nine children.

The aim of the interviews was to evaluate the group as a psychological intervention, establishing:

a) Did the photography workshop group fulfil its objectives?

b) What were the children’s experience of the group, from the parent and child’s perspective?

1. All the interviews were audio recorded and then transcribed and anonymised before deleting the audio recording. The transcriptions were then analysed using thematic analysis as described in Braun and Clarke (2006). This included the following a six-step process of: familiarization, coding, generating themes, reviewing themes, defining and naming themes, and writing up The transcriptions were independently coded by three members of the psychology department before emerging themes were generated, reviewed and named, anda summary produced describing each theme with quotations from the transcriptions.

A full ethics review under the terms of the Government Arrangements of Research Ethics Committees in the UK was not required as no additional data was collected beyond that collected for standard service evaluation as part of medical care. The service evaluation was registered with GOSH NHS Foundation Trust Audit Committee (registration number 3223). Demographics and medical data were obtained from the children’s medical records.

Results

A summary of the qualitative analysis themes included anonymised quotations from parents and children to demonstrate the families’ experience of the photography workshop group. The narrative themes for parents identified included: reducing isolation through shared experience, creative activity as different experience, and sharing experiences after the day. And for the children’s themes of; a fun and interactive day and the opportunity to share in their experiences were identified.

Parent’s perspective of their child’s experience of the day

a) Reducing isolation through shared experience of PIMS-TS diagnosis

Most of the parents (6 out of eight parents) described the significance of their child’s experience of the day in relation to the chance to meet others and being able to share their experience of hospital and PIMS-TS diagnosis. Helping the child to feel less alone in their own experiences of hospital.

‘So just people who have gone through the same thing just to be aware of the extent of their experiences so she’s not alone if that makes sense?’ (Parent 4)

‘A sense of not being alone because I think like being ill can be quite isolating particularly when it’s something that’s quite new and people don’t necessarily know what’s going on and she was in hospital alone’ (Parent 2)

‘ I just hoped that she would feel that she wasn’t the only one’ (Parent 5)

Including the significance for the young people to compare their stories and witness others.

‘She mentioned that they had a big conversation about PIMS and she found out more about what other had experienced as well, and that they were similar to hers’ (Parent 5)

‘I think it was reassuring for him to talk in general terms about the topic and doing creative activities with people who’d been through very similar experiences’ (Parent 1)

Many of the parents (5 out of 8) also spoke of their child being more hopeful having witnessed other young people recovery,

‘He’s still doing Physiotherapy and he’s obviously still very tired and I think he did find it quite reassuring that a couple of children who I think were the first wave who developed PIMS it was reassuring just to see that they are pretty much back to a normal life at this stage’ ‘ Yeah cus it’s about recovery rather than the illness’ (Parent 1)

‘I just hoped that she felt, would feel better about what happened to herself and that she wasn’t the only one’ (Parent 5)

‘Nice for her to meet other people who had been in hospital as well, and to see that they are okay now.’ (Parent 6)

Half the parents shared how it had been positive that the days focus was not on illness.

‘ She really enjoyed just how relaxed it was...that seemed to flow really nicely... I think also the fact that the central focus wasn’t around kind of like, talking about how ill you were it just it did incorporate that, you know the experience’ (Parent 2)

‘ Whilst I got a strong impression from [name], there wasn’t too much talk about the illness, I think it was reassuring for him to talk in general terms about the topic and doing creative activities with people who’d been through very similar experiences (Parent 1)

b) Creative activity and a different experience of hospital

Representing the child and young person’s experience through joint photography and creative activities was the focus of the day. All the young people were offered an opportunity to take photographs and objects they had made home at the end of the day. The activities were mentioned by four of the parents in terms of their children’s enjoyment and something that young people were proud of sharing with their parents at the end of the day.

‘She also enjoyed the type of activities they did so she came home and was really proud, it was lovely actually she had done a letter from herself to those who had supported her while she was ill’ ‘She was really like proud of her artwork as well when she came home’ (Parent 2)

‘He was really happy to be there and he liked it so much to be doing something like this’ (Parent 7)

Two of the parents also mentioned the significance of a different, more positive experience of hospital for young people.

‘I think the activities really helped to kind of bottle up and not be a negative reminder it was really positive from what [name] said’ (Parent 2)

‘Because her main experiences only she had gone to hospital is a bit upsetting because she has had to have blood tests or other tests, that sort of thing. But this time, it was something a bit more enjoyable.’ (Parent 5)

c) Sharing experiences after the day

An important part of the day was the opportunity for children and young people to share their experiences as a group, and a hope that the sharing of stories would continue after the day. This was helped by ‘taking something away from the day’, in terms of images, objects and stories.

The sharing of stories and photos or objects was mentioned by all the parents. For most this was the young person sharing with their friends and family, and for some this was also a hope that the child would stay in touch with others they met on the day.

‘she did some she made some things for her friends and she made I think she made a couple of friends from there as well’ (Parent 4)

‘And I think it was a really good day for him and I can’t say how positive he was about it so yeah that’s just a very small detail’ (Parent 1)

‘Oh he was very happy, he was very happy he was literally standing there waiting saying about how his day and yeah he knew new people there was a party.’ (Parent 7)

‘she showed us the leaf that she made, the hand the hands she made’ (Parent 8)

What the young people shared about the day

a) Fun and interaction

All of the young people told us that they had fun on the day. They enjoyed the interactive activities as an opportunity to meet others, and as a different, more positive experience of hospital.

‘It was lots of fun because I got to meet new people and talk about our experiences’ (YP 5)

‘Because it was a very fun activity and it would nice for them to be somewhere else instead of always being in the hospital.’ (YP 6)

‘I would describe it to them as a fantastic day’ (YP 7)

The photography and making activities were important to the enjoyment of the day, from the perspective of most (7 out of 8) young people.

‘I would say it was a bit more creative than other stuff because sometimes it is just like meeting and chatting and stuff like that. But it was nice to something to do’ (YP 8)

[made it fun and worthwhile] ‘we were able to take pictures of each other (YP 6)

b) Being able to share in their experiences

Similarly to their parents, all of the young people also shared it had been helpful to talk with others who share their experience of hospital and PIMS-TS. And how this made them feel less alone.

‘They all explained what their experience was in the hospital so I could explain mine’ (YP 3)

‘I think meeting other people that went through what I had to go through, and it felt like, it felt like I was less alone’ (YP 4)

‘It was lots of fun because I got to meet new people and talk about our experiences’ ‘It was easier to talk to them because they understand what I have been through because they went through it themselves.’ (YP 5)

Half of the young people also mentioned this being linked to the setting on the day, helping them to feel relaxed and able to talk.

‘It was around it was like a welcoming atmosphere so that was good’ ‘I liked how there was this much effort for our workshop’ (YP 8)

And most (6 out of 8) described how the joint activities helped them to make friends on the day.

‘That I got to do that the girl, and we got to take pictures' (YP 2)

‘it was lots of fun because I got to meet new people and talk about our experiences’ ‘I have made some friend there’ (YP 5)

‘We were bonding, it was fun’ (YP 1)

‘Like making new friends’ (YP 4)

The young people were split in their responses to question if the day made them feel differently about their hospital experience and having PIMS-TS diagnosis. Three of the young people described it having made a difference to their experience of hospital.

‘Just forgetting that I was in hospital’ ‘’It made me feel much better than I was before’ ‘Just like I’m not sure but it just made me feel a bit better’ (YP 2)

‘it’s less a scary in a way’ (YP 4)

The remaining five were unsure or did not know if it had made a difference to how they felt, despite having had a positive experience of the day.

Discussion

The qualitative evaluation of the workshop showed that all the children enjoyed the day and found the photography and creative activities fun. The significance of being with others that shared their experiences of hospital and PIMS-TS was central to their experience. The sharing of stories was supported by the creative photography activity and the focus of the day on ’not just being about illness’. The sharing of their own stories and witnessing of other’s stories allowed the children to take away hope for recovery. Parents and their children agreed that talking and joint activities had been helpful in feeling less alone in their hospital experience and PIMS-TS diagnosis and holding a greater hope in recovery. For some there was also an experience of making friends, and a more positive experience of hospital to take away from the day.

The significance of taking home an image, an object and stories at the end of the day was shared by parents. This allowed an opportunity to share in their child’s experience of the day and witness the child’s pride, and sense of being less alone with PIMS-TS. Following the evaluation these children and families all agreed to be part of the hospital photography exhibition and received a book of photography from the day. This exhibition of their photos was well received, and enjoyed by these families, PIMS-TS MDT and others in the hospital.

Conclusion

This creative photography arts-based group based on narrative therapy principles offered an alternative therapeutic response to those identified as having psychological distress following an acute admission for PIMS-TS. The group, based on narrative therapy ideas and co-facilitation with photography artist in a gallery setting allowed a safe space, that was non stigmatising for young people to share and witness other’s stories. For all the children this was the first time meeting another young person who had PIMS-TS. This group took place at a time of COVID-19 pandemic and restrictions and allowed an alternative, potentially more relevant psychological intervention at a time of isolation due to pandemic restrictions, and uncertainty regarding PIMS-TS long term outcomes (Meade, 2021). The qualitative evaluation of the group provides some support for therapeutic collaboration with art facilitators, psychology and medical MDT to provide post-acute admission groups. The post group interviews allowed the authors to privilege the child and parents described experience of the group. Although, a purely qualitative analysis was not without its limitations in terms of demonstrating the targeted emotional wellbeing outcomes for children. Future groups could measure potential change by supplementing the interviews with a pre and post measure developed to access feelings of isolation and resilience in relation to their hospital admission and recovery. However, despite this limitation the authors would suggest that similar approaches could be relevant to other post-PICU patient groups, or across other paediatric psychology acute settings.

Footnotes

Acknowledgements

The PIMS-TS photography workshop project would not have been possible without Great Ormond Street Hospital (GOSH) Charity arts team and photography artist Marysa Dowling, or without the commitment or support of GOSH PIMS-TS medical MDT and the GOSH paediatric psychology service. An acknowledgment to children and their families that came to the day and have agreed to share their photographs with others.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

A Freeman

Qualitative interview questions

Author biographies

Anita Freeman currently works at the Paediatric Psychology Service at Great Ormond Street Hospital for Children NHS Foundation Trust.

Felicia Ovin was Assistant Psychologist at Great Ormond Street Hospital for Children NHS Foundation Trust at time of this research.

Karyn Moshal currently works at the Department of Infectious Diseases, Great Ormond Street Hospital for Children NHS Foundation Trust. Karyn does research in Infectious Diseases. Her most recent publication is 'Infant botulism and botulism immune globulin in the UK: A case series of four infants'.

Karlie Grant currently works at the Department of Infectious Diseases, Great Ormond Street Hospital for Children NHS Foundation Trust. Karlie is involved in research in Infections Diseases.

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