Process evaluation of a parenting intervention for pre-schoolers with intellectual disabilities who display behaviours that challenge in the UK.

BACKGROUND: Stepping Stones Triple P (SSTP) is a complex parent-mediated intervention aimed to reduce behaviours that challenge in children with moderate to severe intellectual disabilities, aged 30-59 months. METHODS: To formulate a comprehensive understanding of SSTP implementation in the UK, we conducted a process evaluation collecting stakeholder views and considering intervention fidelity, dose, reach, delivery adaptations, and acceptability. RESULTS: Fidelity and quality of delivery ratings were high. Parents perceived SSTP as valuable, reporting increased parental confidence and understanding of the child's behaviours. However, only 30% of families received an adequate dose of the intervention. Parents who only received treatment as usual described feeling abandoned by current services. Service managers emphasised the importance of availability of resources and therapist training for successful intervention delivery. CONCLUSIONS: SSTP supports effective management of early-onset behaviours that challenge. Further work is needed to ensure equitable access to the intervention across health and social care services. TRIAL REGISTRATION: NCT03086876 - https://www. CLINICALTRIALS: gov/ct2/show/NCT03086876?term=Hassiotis+Angela&draw=1&rank=1.

Being a child with intellectual disabilities in hospital: The need for an individualised approach to care.

BACKGROUND: There is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence-base being about those with Autism Spectrum Condition or adults with intellectual disabilities. AIM: To share rich detail of the emotional and physical impact on children and young people with intellectual disabilities of attending hospital, from their own and their parent's perspective. METHODS: Talking Mats interviews, sticker survey and photography with children and young people with intellectual disabilities, and in-depth interviews, hospital diaries and photography with their parents. RESULTS AND CONCLUSIONS: The multiple and compounding layers of complexity surrounding hospital care of children and young people with intellectual disabilities resulted in challenges associated with loss of familiarity and routine, undergoing procedures, managing sensory overload, managing pain and having a lack of safety awareness. An individualised approach to their care is needed.

Talking with children and young people with 22q11DS about their mental health, behaviour, learning and communication.

BACKGROUND: 22q11DS11.2 deletion syndrome (22q11DS) is a complex multisystem syndrome characterized by physical abnormalities, psychiatric comorbidities and cognitive deficits. The views of children and young people (CYP) about the challenges associated with their mental health, behaviour, learning and communication difficulties have not been reported. The aim of this study was to address this gap and to understand whether they had help and support with these and their views of this. METHODS: A three-phase mixed-methods study was undertaken, involving interviews with CYP with 22q11DS, a follow-up survey for those aged 11-25 years and a stakeholder workshop at which CYP presented their views of living with 22q11DS to health professionals and parents. Interview transcripts were thematically analysed, and non-parametric statistics were used to analyse survey data. RESULTS: The interviews (n = 13) and survey (n = 32) indicated a mixed picture, with some CYP not reporting ongoing problems; others who had problems received help but a sizeable proportion had unmet needs and wanted to receive help. Two-thirds reported often experiencing negative feelings, and almost half had difficulties with social interactions. Family members were the main sources of support, with teaching assistants identified as an important support at school. CONCLUSIONS: The emotional impact of 22q11DS on CYP can be significant: They often do not understand the consequences of having 22q11DS and are frequently not given strategies to understand and manage their feelings, behaviour or problems. This leads to a range of emotions that manifest in different ways at home and at school. CYP are able to talk about the impact of different aspects of 22q11DS on them, facilitated by the use of creative methods, but they differ in how the condition affects them and their perceptions about that. It is imperative that CYP themselves are asked about their experiences, feelings and needs to ensure tailoring of interventions to their individual requirements.

'Wanting no regrets': Parental decision making around selective dorsal rhizotomy.

BACKGROUND: Selective dorsal rhizotomy (SDR) is an irreversible neurosurgical procedure used to reduce spasticity while aiming to improve gross motor function for children with cerebral palsy (CP). Little research has explored the complexity of parental decision-making experiences surrounding SDR surgery and required rehabilitation. The aim was to explore parental experiences and expectation in the decision-making process around the SDR operation, physiotherapy treatment and outcomes. METHOD: Qualitative methods using in-depth, semi-structured interviews were used. Eighteen parents (11 mothers and 7 fathers) participated whose child had SDR and completed 2-year post-operative rehabilitation. Data were analysed using thematic analysis. RESULTS: Decision making involved an interacting process between the 'parental information seeking experience', 'influence of professional encounters and relationships' and 'emotional and social aspects'. Despite underlying uncertainties about outcomes, parental drivers of expectations and aspirations for their child preceded and sustained this decision-making process. A foundational narrative of 'wanting no regrets' resolved their decision to undertake SDR. Outcomes did not always match expectations, and parents moved away from a position of idealism, which was driven in part by parental information seeking including overly optimistic media representation. CONCLUSION: Universally, parents expressed they had 'no regrets' on their decision, yet many felt a mismatch between expectation and outcomes of SDR surgery. A greater understanding of the complex nature of SDR decision making is required to help improve family preparedness and provide support from clinicians to enable balanced discussions in parental decision-making.

Pain assessment tools in paediatric palliative care: A systematic review of psychometric properties and recommendations for clinical practice.

BACKGROUND: Assessing pain in infants, children and young people with life-limiting conditions remains a challenge due to diverse patient conditions, types of pain and often a reduced ability or inability of patients to communicate verbally. AIM: To systematically identify pain assessment tools that are currently used in paediatric palliative care and examine their psychometric properties and feasibility and make recommendations for clinical practice. DESIGN: A systematic literature review and evaluation of psychometric properties of pain assessment tools of original peer-reviewed research published from inception of data sources to April 2021. DATA SOURCES: PsycINFO via ProQuest, Web of Science Core, Medline via Ovid, EMBASE, BIOSIS and CINAHL were searched from inception to April 2021. Hand searches of reference lists of included studies and relevant reviews were performed. RESULTS: From 1168 articles identified, 201 papers were selected for full-text assessment. Thirty-four articles met the eligibility criteria and we examined the psychometric properties of 22 pain assessment tools. Overall, the Faces Pain Scale-Revised (FPS-R) had high cross-cultural validity, construct validity (hypothesis testing) and responsiveness; while the Faces, Legs, Activity, Cry and Consolability (FLACC) scale and Paediatric Pain Profile (PPP) had high internal consistency, criterion validity, reliability and responsiveness. The number of studies per psychometric property of each pain assessment tool was limited and the methodological quality of included studies was low. CONCLUSION: Balancing aspects of feasibility and psychometric properties, the FPS-R is recommended for self-assessment, and the FLACC scale/FLACC Revised and PPP are the recommended observational tools in their respective age groups.

Carer preferences of route of administration of transmucosal diamorphine and willingness to take part in a randomised controlled trial: an interview study (DIPPER).

BACKGROUND: Children and young people are usually given liquid morphine by mouth for breakthrough pain, which can take thirty minutes to work. A faster-acting, quickly absorbed, needle-free pain medicine, that is easy to administer is needed such as transmucosal (sublingual, buccal, intranasal) diamorphine. Research evidence relating to the administration of medication for breakthrough pain in children and young people is limited. This study aims to describe the experiences and preferences of parents and/or children and young people regarding the route of administration of diamorphine, barriers and facilitators comparative to oral morphine, and participation in a randomised controlled trial. METHODS: In-depth, semi-structured interviews with parents and/or children and young people at home or hospital/hospice. RESULTS: Thirteen interviews with: nine mothers, one father, and three sets of parents jointly. No interviews took place with a child/young person. Most families had experience of the buccal route which was effective in ease of administration and time to control pain. The intranasal route was preferred by parents irrespective of experience. Parents' willingness for their child to take part in a trial depended on the time commitment, their child's pain trajectory and the stability of analgesic requirements. CONCLUSION: A randomised controlled trial of oral morphine versus transmucosal diamorphine would need to consider trial logistics, especially time commitment. Parents felt that the trial should be introduced initially by the clinical team, with written information from the research team, and sufficient time to ask questions. Patients who had discontinued oral morphine because of side effects, or those with gastrointestinal failure, should be excluded. Maintaining stability in pain management was essential to families, so the timing of the trial is a potential issue.

Culture, cognisance, capacity and capability: The interrelationship of individual and organisational factors in developing a research hospital.

AIM: To share our experience of implementing a programme of interventions aimed at building research capacity and capability of nurses and allied health professionals in a specialist children's hospital. BACKGROUND: Clinicians at the forefront of care are well positioned to lead on research to improve outcomes and experiences of patients but some professional groups continue to be underrepresented. Inequities persist alongside robust national infrastructures to support Clinical Academic Careers for non-medical health professionals, further highlighting the need to address local infrastructure and leadership to successfully build research capacity. DESIGN: An evolving programme of inquiry and analysis was established in one organisation, this included targeted interventions to mitigate barriers and enable research capacity and capability. METHODS: An all-staff survey was conducted in 2015 to understand the existing research culture. Interventions were put in place, evaluated through a second survey (2018), and focus group interviews with staff who had accessed interventions. RESULTS: Respondents demonstrated high levels of interest and commitment to research at the individual level which were not always harnessed at the organisational level. Inequities between professional groups existed in terms of training, time to undertake research and opportunities and outputs. Follow-up revealed continuing structural barriers at an organisational level, however at an individual level, interventions were reflected in >30 fellowship awards; major concerns were reported about sustaining these research ambitions. CONCLUSIONS: Success in building a research-active clinical workforce is multifactorial and all professional groups report increasing challenges to undertake research alongside clinical responsibilities. Individuals report concerns about the depth and pace of cultural change to sustain Clinical Academic Careers and build a truly organisation-wide research hospital ethos to benefit patients. RELEVANCE TO CLINICAL PRACTICE: The achievements of individual nurses and allied health professionals indicate that with supportive infrastructure, capacity, cognisance and capability are not insurmountable barriers for determined clinicians. We use the standards for reporting organisational case studies to report our findings (Rodgers et al., 2016 Health Services and Delivery Research, 4 and 1).

Healthcare professionals' views of the use of oral morphine and transmucosal diamorphine in the management of paediatric breakthrough pain and the feasibility of a randomised controlled trial: A focus group study (DIPPER).

BACKGROUND: Oral morphine is frequently used for breakthrough pain but the oral route is not always available and absorption is slow. Transmucosal diamorphine is administered by buccal, sublingual or intranasal routes, and rapidly absorbed. AIM: To explore the perspectives of healthcare professionals in the UK caring for children with life-limiting conditions concerning the assessment and management of breakthrough pain; prescribing and administration of transmucosal diamorphine compared with oral morphine; and the feasibility of a comparative clinical trial. DESIGN/ PARTICIPANTS: Three focus groups, analysed using a Framework approach. Doctors, nurses and pharmacists (n = 28), caring for children with life-limiting illnesses receiving palliative care, participated. RESULTS: Oral morphine is frequently used for breakthrough pain across all settings; with transmucosal diamorphine largely limited to use in hospices or given by community nurses, predominantly buccally. Perceived advantages of oral morphine included confidence in its use with no requirement for specific training; disadvantages included tolerability issues, slow onset, unpredictable response and unsuitability for patients with gastrointestinal failure. Perceived advantages of transmucosal diamorphine were quick onset and easy administration; barriers included lack of licensed preparations and prescribing guidance with fears over accountability of prescribers, and potential issues with availability, preparation and palatability. Factors potentially affecting recruitment to a trial were patient suitability and onerousness for families, trial design and logistics, staff time and clinician engagement. CONCLUSIONS: There were perceived advantages to transmucosal diamorphine, but there is a need for access to a safe preparation. A clinical trial would be feasible provided barriers were overcome.

Supporting families of children with an undiagnosed genetic condition: Using co-design to ensure the right person is in the right post doing the right job.

BACKGROUND: Families and professionals caring for a child without a definitive diagnosis face unique challenges, particularly in relation to managing uncertainty; access to healthcare; obtaining relevant information and support; and trying to navigate a healthcare system that is often fragmented. We used co-design to inform the establishment of the first UK specialist nursing post dedicated to working with children with undiagnosed genetic conditions and their families. OBJECTIVES: (1) To understand what families and hospital staff want from the service; (2) To understand how the post should be operationalized in practice; (3) To develop the job description and person specification for the postholder. METHODS: A range of approaches were used to collect data: interviews (nine parents and 10 hospital staff); a focus group (three parents); a creative workshop (six patients and siblings); and an online forum (81 parents). Data were analyzed using framework and thematic analysis. The strands of data were brought together and reviewed as a whole to formulate the postholder's job description and person specification. RESULTS: Stakeholders identified nine key elements to the role which were incorporated into the job description: practical support; point of contact; community liaison; signposting to other services; care coordination; supporting families; advocacy; raising awareness; and emotional support. CONCLUSIONS: Highlighted in this paper are the practical aspects of engaging and involving all relevant stakeholders in the process of co-designing a new post and subsequent staff recruitment. The flexibility employed in the setting and methods of data collection were instrumental in ensuring that the views of a diverse range of participants were ascertained. A major consideration is the resources required to undertake co-design, in terms of time and finances. We believe that the resources required for the co-design are offset by the advantages of having the right person in the right post, doing the right job.

'We don't know what tomorrow will bring': Parents' experiences of caring for a child with an undiagnosed genetic condition.

BACKGROUND: Families and healthcare professionals caring for a sick or disabled child without a definitive diagnosis face unique challenges, particularly in relation to managing uncertainty, access to healthcare and coordination of care. There has been little research exploring the impact this has on families, their support needs or their experience of health services. METHODS: This qualitative interview study included interviews with 14 mothers of children with undiagnosed genetic conditions. Transcripts were analysed using thematic analysis. RESULTS: Four themes emerged, uncovering overlapping patterns in the data: (1) living with complexity amidst uncertainty-'We don't know what tomorrow will bring'; (2) parental role-'I do everything I can'; (3) parental role-'Not coping is not an option'; and (4) support needs-'There's lots of help that just isn't out there'. CONCLUSIONS: The results clearly demonstrate the stresses faced when caring for a child with an undiagnosed genetic condition. Some themes are shared with the experience of other families caring for children with complex needs. However, parents were doing all they could for their child in the context of a life of uncertainty, with the absence of a clear diagnosis clearly causing additional stress that impacted on the whole family. Impact on their emotional and physical well-being was evident; they described times of feeling stressed, worried and anxious. They were confused due to being overloaded with information and frustrated by a lack of care coordination. Parents did not appear to prioritize their own well-being and held back their emotions to protect themselves and others. As a result, they had many unmet needs, particularly relating to emotional support.

Clinical and cost effectiveness of a parent mediated intervention to reduce challenging behaviour in pre-schoolers with moderate to severe intellectual disability (EPICC-ID) study protocol: a multi-centre, parallel-group randomised controlled trial.

BACKGROUND: Children with intellectual disabilities are likely to present with challenging behaviour. Parent mediated interventions have shown utility in influencing child behaviour, although there is a paucity of UK research into challenging behaviour interventions in this population. NICE guidelines favour Stepping Stones Triple P (SSTP) as a challenging behaviour intervention and this trial aims to evaluate its clinical and cost effectiveness in preschool children with moderate to severe intellectual disabilities. METHODS: This trial launched in 2017 at four sites across England, with the aim of recruiting 258 participants (aged 30-59 months). The Intervention Group receive nine weeks of SSTP parenting therapy (six group sessions and three individualised face to face or telephone sessions) in addition to Treatment as Usual, whilst the Treatment as Usual only group receive other available services in each location. Both study groups undergo the study measurements at baseline and at four and twelve months. Outcome measures include parent reports and structured observations of behaviour. Service use and health related quality of life data will also be collected to carry out a cost effectiveness and utility evaluation. DISCUSSION: Findings from this study will inform policy regarding interventions for challenging behaviour in young children with moderate to severe intellectual disabilities. TRIAL REGISTRATION NUMBER: Clinicaltrials.gov, NCT03086876. Registered 22nd March 2017, https://clinicaltrials.gov/ct2/show/NCT03086876.

Hospitalized children with intellectual disability: Parents as partners in their care.

BACKGROUND: Limited evidence exists of what hospital care is like for parents of children and young people (CYP) with intellectual disability (ID). Effective collaboration is often missing, with parents lacking trust in professionals, with feelings of being expected to care and consequently unable to leave their child. This paper focuses on what parents want from their relationship with healthcare professionals. METHOD: An ethnographic approach was used, including in-depth interviews and informal discussions with nine parents of CYP with intellectual disability. Researcher voice poems are interspersed with quotations to illustrate key findings. RESULTS: Parents described the need for a genuine partnership with professionals. They identified seven elements that ideally characterize this partnership: Preparation, Accessibility, Reliability, Trust, Negotiation, Expertise and Respect (PARTNER). CONCLUSION: Children and young people with intellectual disability and their parents are frequent users of healthcare services. Getting it right from the outset is important to establish their trust in the system.

Learning disability nurse provision in children's hospitals: hospital staff perceptions of whether it makes a difference.

BACKGROUND: In response to multiple United Kingdom investigations and inquiries into the care of adults with learning disabilities, Mencap produced the Getting it Right Charter which campaigned for the appointment of a Learning Disability Liaison Nurse in every hospital. More recent best practice guidelines from the Care Quality Commission included the need for all children's units to have access to a senior learning disability nurse who can support staff and help them manage difficult situations. However, little evidence exists of the extent of learning disability nurse provision in children's hospitals or the nature and impact of this role. Here we report selected findings from a national mixed methods study of hospital care for children and young people with and without learning disabilities in England. The extent of learning disability nurse provision in children's hospitals is described and perceptions of staff working in hospitals with and without such provision is compared. METHODS: Semi-structured interviews were conducted with senior staff across 15 children's hospitals and an anonymous survey was sent to clinical and non-clinical staff with patient (children and young people) contact within these hospitals. The survey focused on six different elements of care for those with and without learning disability, with additional questions concerning identifying and tracking those with learning disabilities and two open-ended questions. RESULTS: Forty-eight senior staff took part in interviews, which included a subset of nine nurses and one allied health professional employed in a dedicted learning disability nurse role, or similar. Surveys were completed by 1681, of whom 752 worked in a hospital with dedicated learning disability nurse provision. We found evidence of limited and varied learning disability nurse provision which was valued by hospital staff and shown to positively impact their perceptions of being capable to care for children and young people with learning disabilities, but not shown to increase staff perceptions of capacity or confidence, or how children and young people are valued within the hospital, their safety or access to appointments. CONCLUSION: Further consideration must be given to how learning disability nurse roles within children's hospitals are best operationalised in practice to have the greatest impact on staff and families, as well as how we monitor and evaluate them to ensure they are being utilised effectively and efficiently. TRIAL REGISTRATION: The study has been registered on the NIHR CRN portfolio 20,461 (Phase 1), 31,336 (Phases 2-4).

Studying Children's Experiences in Interactions With Clinicians: Identifying Methods Fit for Purpose.

Increased emphasis on the child's voice and point of view in care and treatment has led to an expansion in the development of methods to access and identify their perspectives. Drawing on our experiences in a study of children with leukemia in hospital, this article explains the challenges and opportunities that arise in the use of five commonly used methods in a study of hospitalized children's experiences with health care professionals, including the "Draw and Write" technique, a sticker activity, a paper-person exercise, informal interviews, and participant observation. Each of these methods was examined with regard to ease of use, data generation, and utility of data for accessing children's perspectives and development of initial clinical guidance.

To flag or not to flag: Identification of children and young people with learning disabilities in English hospitals.

BACKGROUND: Children and young people with learning disabilities experience poor health outcomes and lengthier hospital admissions than those without learning disabilities. No consistently applied, systematic approach exists across the NHS to identify and record this population. This paper describes practices in English hospitals to identify children and young people with learning disabilities. METHOD: Interviews: 65 NHS staff. Questionnaire: 2,261 NHS staff. Conducted across 24 NHS hospitals in England. RESULTS: No standardized approach exists to identify children or young people with a learning disability or for this information to be consistently recorded, communicated to relevant parties within a hospital, Trust or across NHS services. Staff reported a reliance on parents to inform them about their child's needs but concerns about "flagging" patients might be a significant barrier. DISCUSSION: Without an integrated systematic way across the NHS to identify children with learning disabilities, their individual needs will not be identified.

Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study.

BACKGROUND: Children and young people (CYP) with learning disabilities (LD) are a vulnerable population with increased risk of abuse and accidental injury and whose parents have reported concerns about the quality, safety and accessibility of their hospital care. The Care Quality Commission's (CQC) view of best practice for this group of patients includes: access to senior LD nurse provision; a clearly visible flagging system for identifying them; the use of hospital passports; and defined communication strategies (Glasper, Comp Child Adolesc Nurs 40:63-67, 2017). What remains unclear is whether these recommendations are being applied and if so, what difference they are making. Furthermore, what we do not know is whether parental concerns of CYP with LD differ from parents of other children with long-term conditions. The aims of this study were to 1) describe the organisational context for healthcare delivery to CYP with LD and their families and 2) compare staff perceptions of their ability to identify the needs of CYP with and without LD and their families and provide high quality care to effectively meet these needs. METHODS: Individual interviews (n = 65) and anonymised online survey (n = 2261) were conducted with hospital staff working with CYP in 15 children's and 9 non-children's hospitals in England. The majority of interviews were conducted over the telephone and recorded and transcribed verbatim. Health Research Authority was obtained and verbal or written consent for data collection was obtained from all interview participants. RESULTS: The nature and extent of organisational policies, systems and practices in place within hospitals to support the care of CYP with LD differs across England and some uncertainty exists within and across hospitals as to what is currently available and accessed. Staff perceived that those with LD were included less, valued less, and less safe than CYP without LD. They also reported having less confidence, capability and capacity to meet the needs of this population compared to those without LD. CONCLUSION: Findings indicate inequality with regards the provision of high quality hospital care to children and young people with LD that meets their needs. There is a pressing need to understand the impact this has on them and their families. TRIAL REGISTRATION: The study has been registered on the NIHR CRN portfolio 20461 (Phase 1), 31336 (Phases 2-4).

Healthcare professional and interpreter perspectives on working with and caring for non-English speaking families in a tertiary paediatric healthcare setting.

OBJECTIVE: To understand the perspectives of healthcare professionals and interpreters in relation to working with and caring for non-English speaking families accessing National Health Service paediatric tertiary health care services. DESIGN: Focus group and interview methods were used to elicit the views of healthcare professionals and interpreters at one tertiary paediatric hospital in the United Kingdom. Data were subjected to framework analysis. RESULTS: Participants identified a number of factors affecting communication and their interaction with non-English speaking families in this setting, including time, role uncertainty, and interlinked dimensions of culture and gender. They also described how the nature of this communication could impact on both the delivery of care and the patient and family experience. These findings highlight gaps in services, training, and support for families, staff and interpreters. These need to be recognised and addressed by those in practice to improve care delivery and help tackle health inequalities. CONCLUSION: Our data show how significant the impact of language barriers can be, and the need to consider not only how communication can be improved, but also how this is situated in the specific context of tertiary paediatric care as well as a wider social context of inequity.

The Challenges of Caring for Long-Stay Patients in the PICU.

OBJECTIVE: Compared to shorter-stay patients, caring for long-stay patients in the ICU entails a disproportionate burden for staff. Our objective was to gain a deeper understanding of the impact on staff of caring for children who have a prolonged stay on the PICU. DESIGN: Qualitative study based on semi-structured interviews. Data were analyzed using the Framework approach. SETTING: Children's tertiary hospital. PARTICIPANTS: Seventeen members of staff (7 psychosocial staff, 7 nurses, 3 consultants) working in the PICU, neonatal ICU, or cardiac ICU (PICU will be used to encompass neonatal ICU, cardiac ICU, and PICU for the remainder of this article). INTERVENTIONS: Semi-structured, tape-recorded interviews. MEASUREMENTS AND MAIN RESULTS: Staff reported both positive and challenging aspects of caring for long-stay patients in the PICU. Five key areas relating to the challenges of caring for long-stay patients were identified: staff expectations about their work, characteristics of the patient group, the impact on staff, the impact on the wider unit, and the availability of support. Staff views were often compounded by individual cases they had been involved with or had heard about which fell at either end of the spectrum of "good" and "bad". CONCLUSIONS: Whilst there are reported benefits associated with caring for long-stay patients, there are a number of challenges reported that may have implications for staff and the wider unit. When caring for a particular sub-group of long-stay patients, staff may be more likely to experience negative impacts. A key priority for the PICU is to ensure that support mechanisms are timely, accessible, and allow staff to explore their own reactions to their work.

The Experience of Long-Stay Parents in the ICU: A Qualitative Study of Parent and Staff Perspectives.

OBJECTIVE: Meeting the needs of parents of critically ill children is increasingly being recognized as an important factor in the child's clinical outcome as well as the implications it has for future parenting. Little is specifically known about the experience of parents who have a child in the ICU for a prolonged period. Our objective was to understand the experiences of this group to assist in the identification of mechanisms for providing support. DESIGN: Qualitative study based on semistructured interviews. Data were analyzed using the Framework approach. SETTING: The study took place in a tertiary pediatric hospital containing three ICUs: PICU, cardiac ICU, and neonatal ICU (ICU will be used to encompass neonatal ICU, cardiac ICU, and PICU for the remainder of the article). SUBJECTS: Seventeen members of staff and 26 parents of a child who had a long stay in one of the three ICUs. INTERVENTIONS: Semistructured, tape-recorded interviews. MEASUREMENTS AND MAIN RESULTS: Analyses identified two overarching themes, "parent process" and "parent/staff interface," and six subthemes: adjustment, normalization/institutionalization, conflict, involvement in child's care, individualized care, and transition. Themes have been modeled to account for the parental process during a long stay in the ICU and the potential implications for the relationships and interactions between parents and staff. Findings are presented from the data related to the parent process and parent/staff interface. Inclusion of an element in the model related to staff indicates where support mechanisms should be focused. CONCLUSIONS: Over time, long-stay families will likely become more familiar with the environment of the ICU, more knowledgeable about their child's medical needs and more familiar with the staff looking after their child. This has a number of implications for staff working in the ICU.