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.
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.
Critically ill adolescents are usually treated on intensive care units optimised for much older adults or younger children. The way they access and experience health services may be very different to most adolescent service users, and existing quality criteria may not apply to them. The objectives of this pilot study were, firstly, to determine whether adolescents and their families were able to articulate their experiences of their critical care admission and secondly, to identify the factors that are important to them during their intensive care unit (ICU) or high dependency unit (HDU) stay. Participants were 14–17 year olds who had previously had an emergency admission to an adult or paediatric ICU/HDU in one of four UK hospitals (two adult, two paediatric) and their parents. Semi-structured interviews were conducted with eight mother-adolescent dyads and one mother. Interviews were transcribed and analysed using framework analysis.Conclusion: The main reported determinant of high-quality care was the quality of interaction with staff. The significance of these interactions and their environment depended on adolescents’ awareness of their surroundings, which was often limited in ICU and changed significantly over the course of their illness. Qualitative interview methodology would be difficult to scale up for this group. What is known • Critically ill adolescents are usually treated on intensive care units optimised for older adults or younger children.• The way they access and experience health services may be different to most adolescent patients; existing quality criteria may not apply. What is new • Reported determinants of high-quality care were age-appropriateness of the environment, respectfulness and friendliness of staff, communication and inclusion in healthcare decisions.• The significance of these depended on adolescents’ awareness of their surroundings, which was often limited and changed over the course of their illness.
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.
AimsWhilst patient turnover in the Paediatric Intensive Care Unit (PICU) is high with an average stay of 2 days, improvements in life-sustaining treatments have resulted in increasing numbers of children who are hospitalised for long periods of time. A child’s admission to the PICU induces high levels of stress and anxiety in parents. A growing number of research studies have explored the needs of family members of critically ill children. However, little is known about the experience of parents who have a child in the PICU for a prolonged period of time.MethodsSemi-structured interviews were conducted with 17 members of staff (3 consultants, 7 nursing staff and 7 allied-health professionals) and 27 parents whose child had a long-stay in one of three units providing intensive care at a tertiary paediatric hospital. Framework Analysis was used to analyse the data.ResultsEvery family is different in how they cope and adapt to being in the PICU for a prolonged period of time. Despite differences, a number of things characterised long-stay parents’ experiences of being in the PICU. Parents adjusted to being in the PICU, developing routines which supported coping. Long-stay parents were grateful for any opportunity to be involved in their child’s care and relied upon the nursing staff to facilitate this. Their exposure to the PICU resulted in increased knowledge of their child’s condition and the environment. This knowledge led to heightened sensitivity to, and awareness of, the care provided by staff; both the good and bad. Moving on from the PICU can be particularly difficult for long-stay parents who have become accustomed to life in the PICU.ConclusionLong-stay families will likely become more familiar with the environment, more knowledgeable about their child’s medical needs and more familiar with the staff looking after their child than average-stay parents in the PICU. They are likely to seek a greater involvement in their child’s care and may be more critical of the care provided by staff. This has implications for staff working in the PICU.
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