Young people's priorities for the self-management of distress after stoma surgery due to inflammatory bowel disease: A consensus study using online nominal group technique.

INTRODUCTION: The aim of this study was to gain consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self-management of stoma-related distress. The current identification and management of distress in young people with a stoma is often suboptimal in clinical settings and there is a need for improved support resources. METHODS: Two consensus group meetings were carried out via online video conferencing, using nominal group technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self-management intervention. RESULTS: Nineteen young people, aged 19-33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty-nine topics were generated by participants, seven of which reached consensus of ≥80%, that is, a mean of ≥5.6 on a 7-point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma 'hacks', for example, useful everyday tips regarding clothing, making bag changes easier and so forth; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey. CONCLUSIONS: Findings extend previous research on young people's experiences of stoma surgery, by generating consensus on young people's priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self-management resource for young people with an IBD stoma and have relevance for the clinical management of stoma-related distress in this population. PATIENT OR PUBLIC CONTRIBUTION: Three patient contributors are co-authors on this paper, having contributed to the study design, interpretation of results and writing of the manuscript. The study's Patient and Public Involvement and Engagement advisory group also had an integral role in the study. They met with the research team for four 2-h virtual meetings, giving input on the aims and purpose of the study, recruitment methods, and interpretation of findings. The group also advised on the age range for participants. The views of young people with a stoma are the central component of the study reported in this paper, which aims to gain consensus among young people with an IBD stoma on their priorities for the content of a resource to self-manage distress related to stoma surgery.

Healthcare professionals' priorities for training to identify and manage distress experienced by young people with a stoma due to inflammatory bowel disease: a consensus study using online nominal group technique.

OBJECTIVES: Young people with a stoma due to inflammatory bowel disease (IBD) commonly experience distress; however, this is not always well managed in clinical settings. More effective support may/is likely to reduce the possibility of individuals experiencing sustained distress, which may engender depression or anxiety. This study aimed to gain consensus among a multidisciplinary group of healthcare professionals (HCPs) on priorities for training in the identification and management of distress in this population. One of the authors is a young person with a stoma. DESIGN: Participants were recruited through Twitter (X) and the researchers' clinical/research contacts. Two consensus group meetings were conducted using Nominal Group Technique, involving participants generating, discussing and rating on a Likert scale, topics for inclusion in an HCP training package. SETTING: Online video conferencing. Participants were located across England, with one based in the USA. PARTICIPANTS: Nineteen HCPs participated: three general practitioners, three stoma nurses, two IBD nurses, nine clinical psychologists and two gastroenterologists. RESULTS: Twenty-five topics were generated by participants; 19 reached consensus of ≥80%, that is, a mean of ≥5.6 on a 7-point Likert scale. These included: recognising and validating different levels of, and variation in, distress; tackling stigma and normalising having a stoma; everyday practicalities of stoma management, including food and sleep; opening and holding conversations about stoma-related distress; considering the impact of different cultural beliefs on adaptation after stoma surgery; training in simple techniques for gauging the patient's distress during clinical encounters; having conversations about body image; and myth-busting common fears, such as odour. CONCLUSIONS: This study is the first to identify HCP training priorities for managing stoma-related distress in young people. Consensus was reached for 19 topics, reflecting the varied needs of young people with a stoma. Findings will inform development of a training package for HCPs treating young people with IBD and a stoma.

Dietary Therapy to Improve Nutrition and Gut Health in Paediatric Crohn's Disease; A Feasibility Study.

Bovine colostrum (BC) has anti-inflammatory, anti-infective, growth and intestinal repair factors that may be beneficial in Crohn's disease (CD). We assessed whether daily BC for up to 3 months was acceptable to children and young people (CYP) with CD in remission or of mild/moderate severity. CYP were randomised to receive either BC or matching placebo milk daily for 6 weeks (blinded phase); all received BC for the following 6 weeks (open phase). In 23 CYP, median (inter-quartile range) age was 15.2 (13.9-16.1) years and 9 (39.1%) were girls. A similar proportion of CYP in the BC and placebo arms completed the blinded phase (8/12, 75.0% and 9/11, 81.8% respectively). Twelve (70.6%) CYP completed the open phase with 7 (58.3%) tolerating BC for 3 months. Diaries in weeks 2, 6 and 12 revealed that most CYP took BC every day (5/7, 71.4%; 5/8, 62.5% and 6/11, 54.5% respectively). In interviews, opinions were divided as to preference of BC over the placebo milk and some preferred BC over other nutritional supplements. Symptoms, clinical and laboratory variables and quality of life were similar in the two arms. BC may be an acceptable nutritional supplement for daily, longer-term use in CYP with CD.

Interventions and methods to prepare, educate or familiarise children and young people for radiological procedures: a scoping review.

Children attending hospital for radiological procedures can experience uncertainty, anxiety and distress; this can result in sub-optimal experiences for children, poor scan quality and the need for radiological procedures to be rescheduled or sedation to be used. The preparation and education of children before clinical procedures has been shown to have a positive influence on procedural outcomes. This scoping review aimed to locate and examine the evidence relating to non-invasive interventions and methods to prepare, educate and familiarise children for radiological procedures within a healthcare setting. A comprehensive search strategy identified 36 articles. A narrative synthesis approach was adopted to make sense of the key findings. Studies investigated a range of radiological procedures (MRI, plain radiographs, CT, fluoroscopy and Micturating cystourethrogram) using a wide range of interventions (smartphone applications, storybooks, videos, mock scanners) which varied by method, mode of delivery and target audience. The outcomes used to evaluate the value and impact of the interventions are wide, varied and inconsistently applied making it difficult to judge which interventions offer the optimal impact on scan quality, scan completion and children's experiences. This review highlights that there is a need to further understand which specific elements of the non-invasive interventions 'work best' for children. There is a need for consistency on the outcomes measured and for these measures to include child-centred outcomes alongside scan quality and length of radiological procedure.

'I feel like my house was taken away from me': Parents' experiences of having home adaptations for their medically complex, technology-dependent child.

Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s, there is a paucity of literature about parents' experiences of having home adaptations made to enable their home to be a place of care for their child. Using the findings from auto-driven photo-elicitation interviews conducted between August 2017 and June 2018 with 12 parents (10 mothers and 2 fathers) who have a technology-dependent child (aged 5-25 years) living in England, Scotland and Wales and David Seamon's five concepts of at-homeness (appropriation, at-easeness, regeneration, rootedness and warmth) as a conceptual framework, this paper addresses how parents' experienced home adaptations. Thematic analysis generated a meta-theme of 'Home needs to be a home for all family members' and the three key themes: (1) 'You just get told' and 'you're not involved'; (2) It's just the 'cheapest', 'quickest', 'short-term' approach; (3) Having 'control' and 'thinking things through.' The need to involve parents in decision-making about adaptations that are made to their home (family-informed design) is clear, not only from a cost-saving perspective for the state, but for creating an aesthetic and functional home that optimises health, well-being and feelings of at-homeness for the entire family.

The Acceptability and Impact of the Xploro Digital Therapeutic Platform to Inform and Prepare Children for Planned Procedures in a Hospital: Before and After Evaluation Study.

BACKGROUND: There is increasing interest in finding novel approaches to improve the preparation of children for hospital procedures such as surgery, x-rays, and blood tests. Well-prepared and informed children have better outcomes (less procedural anxiety and higher satisfaction). A digital therapeutic (DTx) platform (Xploro) was developed with children to provide health information through gamification, serious games, a chatbot, and an augmented reality avatar. OBJECTIVE: This before and after evaluation study aims to assess the acceptability of the Xploro DTx and examine its impact on children and their parent's procedural knowledge, procedural anxiety, and reported experiences when attending a hospital for a planned procedure. METHODS: We used a mixed methods design with quantitative measures and qualitative data collected sequentially from a group of children who received standard hospital information (before group) and a group of children who received the DTx intervention (after group). Participants were children aged between 8 and 14 years and their parents who attended a hospital for a planned clinical procedure at a children's hospital in North West England. Children and their parents completed self-report measures (perceived knowledge, procedural anxiety, procedural satisfaction, and procedural involvement) at baseline, preprocedure, and postprocedure. RESULTS: A total of 80 children (n=40 standard care group and n=40 intervention group) and their parents participated in the study; the children were aged between 8 and 14 years (average 10.4, SD 2.27 years) and were attending a hospital for a range of procedures. The children in the intervention group reported significantly lower levels of procedural anxiety before the procedure than those in the standard group (two-tailed t63.64=2.740; P=.008). The children in the intervention group also felt more involved in their procedure than those in the standard group (t75=-2.238; P=.03). The children in the intervention group also reported significantly higher levels of perceived procedural knowledge preprocedure (t59.98=-4.892; P=.001) than those in the standard group. As for parents, those with access to the Xploro intervention reported significantly lower levels of procedural anxiety preprocedure than those who did not (t68.51=1.985; P=.05). During the semistructured write and tell interviews, children stated that they enjoyed using the intervention, it was fun and easy to use, and they felt that it had positively influenced their experiences of coming to the hospital for a procedure. CONCLUSIONS: This study has shown that the DTx platform, Xploro, has a positive impact on children attending a hospital for a procedure by reducing levels of procedural anxiety. The children and parents in the intervention group described Xploro as improving their experiences and being easy and fun to use.

Holding Their Own and Being Resilient: Narratives of Parents over the First 12 Months of Their Child Having Tracheostomy.

Caring for a child with a tracheostomy can be challenging for parents and learning to safely manage their child's airway can be frightening due to their child's breathing issues, complex diagnosis and the difficult decisions they have to make. The aim of this longitudinal narrative study was to tell the stories of parents whose child had a new tracheostomy. Twenty three narrative interviews were conducted with twelve parents from nine families at three time points over a 12 month period. Data were analyzed using a socio-narratological approach. The stories told how parents were able to 'hold their own' despite experiencing shock, emotional upheaval and uncertainty during the period of their child's surgery. 'Holding their own' was possible for parents because resilience played an important part of their journey. Parents continued to be resilient as they adapted to being at home and dealt with ongoing challenging and stressful circumstances. All of the parents told stories reflecting on and recognizing that there were times when they exhibited higher levels of resilience and times when their resilience was lower. Looking back on their experiences parents appreciated that they reframed their initial often negative views about their child's need for a tracheostomy into more positive understandings and a future orientated perspective.

A study of childhood cancer survivors' engagement with long-term follow-up care: 'To attend or not to attend, that is the question'.

PURPOSE: In the UK, there are over 40,000 childhood cancer survivors (CCS); this figure grows approximately 1300 annually. Two-thirds are at risk of developing serious disabling or life-threatening conditions due to adverse late effects of the cancer or treatment received in childhood. Life-long, follow-up care for the surveillance and management of late effects is recommended. This study explored CCS' views and experiences of long-term follow-up (LTFU) care within a cancer centre. METHODS: Paper questionnaires (n = 113) and qualitative interviews (n = 13). RESULTS: The majority (n = 83, 80%) of CCS reported being satisfied with their LTFU care and felt that it was important to attend long-term survivorship follow-up (n = 97, 86%). However, some were not well informed about their cancer treatment history, purpose for attending the clinic or the potential for late effects. Barriers associated with LTFU included; provision of information, lack of interpersonal relationships, practical and logistic challenges. CONCLUSIONS: Barriers identified can be addressed through strategies including provision of verbal and written information and care plans to increase CCS' knowledge of their cancer history, risk of late effects and the purpose of LTFU care, both at transition and throughout their survivorship journey; patient-centred services that enhance patient choice and flexibility of access to multiple specialities; and use of risk stratified pathways to encourage supported self-management based on cancer type, co-morbidity, and level of professional involvement required. Improving regular provision of information at critical time-points, and exploring a flexible, patient-centred delivery of LFTU care based on risk, could increase attendance and self-management in CCS.

Developing a web-based resource for parents of young children undergoing day surgery.

Background The shift to day case surgery makes parents more responsible for managing their child's post-operative care after discharge from hospital.

Idiopathic scoliosis: managing pain before and after spinal surgery.

Idiopathic scoliosis surgery is performed to correct a curvature of the spine. This is a painful surgical procedure which is carried out on otherwise healthy young people. This article reports on a small evaluation project which focused on young people's opinions and experiences of their pain information needs, pain management and pain assessment. Nine young people completed written activity sheets before and after scoliosis surgery. Most of the information provided on the activity sheets involved positive comments about the surgical experience although some indicated that the management of pain continued to be a challenge after spinal surgery. The project has highlighted that there is more work to be done to ensure that young people are prepared for surgery and they are helped to convey their experiences of pain to health professionals during their treatment and recovery.

Developing biographies: the experiences of children, young people and their parents of living with a long-term condition.

This article reports on data from a qualitative interview study that sought to understand the experiences, choices and actions of children and young people undergoing surgery for a long-term condition and that of their parents. Using the concept of biography the article examines how the biographies of children, young people and their parents can be influenced by surgery and the ongoing management of a long-term continence condition. This article challenges previous work that characterises the presence of a condition from birth as a continuous and normal part of the illness experiences of these patients. Although this may be the case in some instances, children, young people and their parents can experience diverse and changing experiences associated with ongoing condition management as well as surgery. Biographical continuity, enrichment and disruption are all relevant concepts for such patients living with a long-term continence condition. These can be influenced by their previous experiences of their condition, their expectations, and dynamics with parents, including changes associated with development and the increasing independence of young people.

A qualitative study of the pre-operative preparation of children, young people and their parents' for planned continence surgery: experiences and expectations.

AIM: The aim of this study is to explore children's, young people's and parents' pre-operative experiences of continent stoma formation. BACKGROUND: Current research investigating continent stoma surgery focuses on surgical outcomes including complication rates, adherence to management regimes, self-management practices and levels of continence achieved. Despite reports of pre-operative anxiety in families undergoing continent stoma surgery, there has been a lack of research exploring pre-operative experiences, information needs or decision-making processes in this group. DESIGN: A qualitative study. METHODS: Forty-nine semi-structured interviews were conducted with 17 children, young people and their parents. Data were collected at key points in the surgical process that aimed to represent a longitudinal perspective of continent stoma formation. RESULTS: The interviews suggested that children's, young people's and parents' information needs in relation to the long-term implications of surgery and for their day-to-day lives were not being adequately met. The preparation process was described as being positively influenced by contact with a nurse specialist, being given time to make the decision and having access to different sources of information. CONCLUSION: Decisions regarding life-long planned surgery can be challenging. The individual involvement and information needs of children, young people and their parents need to be recognised during pre-operative preparation. RELEVANCE TO CLINICAL PRACTICE: Health professionals need to discuss the holistic implications of continent stoma surgery and provide families with the time and opportunity to consider surgery and access relevant sources of information pre-operatively.

Experiences of young people admitted for planned surgery.

BACKGROUND: Despite national and international guidance, young people requiring hospitalisation are still cared for in inappropriate environments and not always encouraged to participate in decision making processes. Much of the research relating to the inpatient experience of young people was conducted over 25 years ago and does not always consult young people directly, an approach which is emphasised in today's health service and professional policies. AIM: To explore the extent young people are consulted and involved in planing their care and whether they have adequate facilities during an inpatient stay in a regional paediatric hospital. METHOD: Seven young people aged 13 to 16 volunteered to participate out of 33 identified from forthhcoming theatre lists. They kept unstructured diaries during their hospitalisation and these were used to aid discussion in exploratory interviews carried out within two weeks after discharge. RESULTS: Framework analysis of interview data identified issues for the young people relating to their pre-operative knowledge, sources of information, consultation with healthcare professionals and facilities available for them. Where separate facilities for young people did exist, they were used to break from the noisy environment of the children's ward and to access appropriate entertainment. Consent and involvement in decision-making were highlighted in the interviews and although several young people had been involved in the decision-making process, some identified barriers to their effective involvement. CONCLUSION: Although conclusions are limited by the small scale of the study, it is evident that young people's views on their social and psychological needs need to be heard, not just their views on the physical environment.

Preparing children and young people for stoma surgery.

There is little published literature regarding children and young people with stomas and their preoperative care. Research in adults reveals negative psychosocial consequences, but the perceptions of children and young people may be different, depending on the reason for the stoma formation and the degree of involvement in decisions. Post-operative problems and later negativity can be minimised with informed decision making and partnership from the outset between the healthcare team, parents and child. Preparation approaches known to be successful for other forms of surgery can be adapted to prepare the child/young person for stoma surgery.