Parents' experiences of living with a child with a long‐term condition: a rapid structured review of the literature

Background

Living with a child with a long‐term condition can result in challenges above usual parenting because of illness‐specific demands. A critical evaluation of research exploring parents'' experiences of living with a child with a long‐term condition is timely because international health policy advocates that patients with long‐term conditions become active collaborators in care decisions.

Methods

A rapid structured review was undertaken (January 1999–December 2009) in accordance with the United Kingdom Centre for Reviews and Dissemination guidance. Three data bases (MEDLINE, CINAHL, PSYCINFO) were searched and also hand searching of the Journal of Advanced Nursing and Child: Care, Health and Development. Primary research studies written in English language describing parents'' experiences of living with a child with a long‐term condition were included. Thematic analysis underpinned data synthesis. Quality appraisal involved assessing each study against predetermined criteria.

Results

Thirty‐four studies met the inclusion criteria. The impact of living with a child with a long‐term condition related to dealing with immediate concerns following the child''s diagnosis and responding to the challenges of integrating the child''s needs into family life. Parents'' perceived they are not always supported in their quest for information and forming effective relationships with health‐care professionals can be stressful. Although having ultimate responsibility for their child''s health can be overwhelming, parents developed considerable expertise in managing their child''s condition.

Conclusion

Parents'' accounts suggest they not always supported in their role as manager for their child''s long‐term condition and their expertise, and contribution to care is not always valued.     

Nurse‐controlled analgesia (NCA) following major surgery in 10 000 patients in a children’s hospital

Background and Objectives: Patients who received NCA with morphine following major surgery between 1996 and 2008 at Great Ormond Street Hospital, London, UK, were prospectively studied in the postoperative period to determine effectiveness, morphine requirements, incidence of common side effects, and serious adverse events. Methods: The morphine NCA regimen and monitoring was according to standard hospital protocols. Data were collected prospectively and subsequently entered by trained personnel into a secure database. Patient demographics, effectiveness and satisfaction rates, morphine requirements, side effects, and serious complications were recorded. Results: 10 079 patients were included. The average age was 4 years old (range 1 day to 20.5 years, median 2.3 years). There were 510 neonates. The average NCA duration was 43.7 h. 1.8% of morphine NCAs were replaced by other methods because analgesia was unsatisfactory. Satisfaction ratings were ‘good’ or ‘very good’ for 98% of the remainder. Average daily morphine requirement (mcg·kg^?1·h^?1) was related to age, surgical category, and postoperative time. Side effects included PONV (25%), itching (9.4%), depression of respiration, and sedation (4.5%); incidences varied with age, morphine dose, and type of surgery. Serious, potentially life‐threatening adverse effects (SAE) were 0.4%. There were no deaths. SAE were significantly greater in neonates (2.5%), relative risk 9.4, P < 0.001. Morphine dose in neonates who experienced SAE was not significantly different from other neonates. Conclusion: NCA with morphine is an acceptable, safe, and effective method of postoperative analgesia for a wide range of ages and types of surgery in our practice. Morphine requirements increase with age, but there was also considerable inter‐individual variation within age groups. PONV, itching, sedation, and respiratory depression are expected side effects. SAE are uncommon but the incidence is greatest in neonates.     

The influence of perceived accessibility and expertise of healthcare professionals,and service austerity,on mothers' decision-making

Mothers often make key decisions regarding their children's health. They hold core beliefs and attitudes towards healthcare providers, relying on healthcare services to provide support, advice and reassurance. It is crucial that health providers form authentic relationships with families with young children, in order to effectively provide healthcare, support and information as needed. In this paper, we explore mothers' views on the accessibility and expertise of healthcare professionals caring for their child's health. A case study, using a geographic post code as the case boundary was used. Focus groups and semi-structured interviews with mothers of children aged under five years old were conducted. Participants (n = 33) were recruited from local playgroups and six focus groups (19 participants) and 14 individual interviews were conducted. Qualitative data were analysed using thematic analysis. General Practice (including general practitioners [GPs] and practice nurses) was considered to be the preferred option when seeking timely healthcare advice and information. Participant mothers were open to accessing professional advice concerning their child's health, from a range of health professionals and understood the role and potential contribution of various health professionals. However, some factors, influenced mothers' decision-making. These were captured in three themes: maternal perceptions of GPs as accessible experts; practice nurses as approachable and reassuring sources of advice; and difficulty in accessing health visiting services primarily due to service funding cuts. Further investment in primary care services, including expansion of the practice nurse role and an increase in health visiting service provision, may help to provide sufficient support for mothers seeking healthcare advice. In addition, healthcare service strategies, which engage with mothers and ensure nurses are recognised as knowledgeable, accessible, supportive and a suitable alternative to GPs, would be beneficial.     

A case study of the effectiveness of nurse-led screening programmes for cervical cancer among Hong Kong Chinese women

Cervical cancer remains a cause of morbidity and mortality among women despite the efficacy of Pap smear screening. Uptake rates for Papanicolaou (Pap) smears among Hong Kong Chinese women remain low and evidence suggests that both intrinsic and extrinsic factors influence women's attendance for Pap smear screening, particularly the practitioner taking the smear. This study examined the experiences and perceptions of Hong Kong Chinese women of having a Pap smear taken by a female doctor or a female nurse using a case study design. A convenience sample of 50 women was selected from the two case study settings. Data collection involved a confidential structured interview, followed by focus group interviews with a sample of women participating in the structured interview. The findings relating to the technical quality and outcome of care provide the focus for this paper. Although women were highly satisfied with the care provided by both practitioners, women were more satisfied with the information given about the procedure by the nurse (P = 0.0130) and had more confidence in the nurse (P = 0.024). One of the five criteria used to assess the quality of smears demonstrated the doctor achieved a statistically significant higher number of smears containing the required percentage of endocervical cells (P = 0. 0180). Nevertheless, none of the smears taken by the nurse required repeating due to an inadequate specimen. These findings suggest, despite the need for audit of Pap smears, that appropriately qualified nurses can make an important contribution to the uptake of Pap smears among this population.     

An evaluation of adverse incident reporting

Abstract: To examine the reliability of adverse incident-reporting systems we carried out a retrospective review of the mother and baby case notes from a series of 250 deliveries in each of two London obstetric units. Notes were screened for the presence of adverse incidents defined by lists of incidents to be reported in accordance with unit protocols. We assessed the percentage of adverse incidents reported by staff to the maternity risk manager at each unit; the percentage of incidents detected by each risk manager, but not reported; and the percentage of incidents identified only by retrospective case note review. A total of 196 adverse incidents was identified from the 500 deliveries. Staff reported 23% of these and the risk managers identified a further 22%. The remaining 55% of incidents were identified only by retrospective case-note review and not known to the risk manager. Staff reported about half the serious incidents (48%), but comparatively few of the moderately serious (24%) or minor ones (15%). The risk managers identified an additional 16% of serious incidents that staff did not report. Drug errors were analysed separately; only two were known to the risk managers and a further 44 were found by case-note review. Incident-reporting systems may produce much potentially valuable information, but seriously underestimate the true level of reportable incidents. Where one risk manager covers an entire trust, rather than a single unit, reporting rates are likely to be very much lower than in the present study. Greater clarity is needed regarding the definition of reportable incidents (including drug errors). Staff should receive continuing education about the purposes and aims of clinical risk management and incident reporting and consideration should be given to designating specific members of staff with responsibility for reporting.     

Support needs of children's nurses involved in child protection cases

Aim  This qualitative study explored the experiences of nurses working in a hospital paediatric department, who had direct involvement in child protection cases, to discover their support needs and suggest developments in training and support.
Background  The study was inspired by an awareness of increasing anxiety amongst nurses involved in child protection cases.
Method  A phenomenological approach was used with fifteen nurses during semi-structured interviews, which were taped, transcribed and analysed thematically.
Results  Involvement in child protection has a lasting impact; nurses need procedural information from a knowledgeable supporter during a case; and, they need individualized support. The personal qualities of the Named Nurse for Safeguarding Children were crucial.
Conclusions  Involvement in child protection cases has lasting effects for individuals. The emotions generated can lead to interagency and inter-professional communication difficulties and affect the future management of child protection by individuals. Seeking support can be hampered by individuals' fear of ridicule or of making a mistake.
Implications for nursing management  This study has implications for the training of children's nurses in child protection procedures, and the provision of appropriate effective support for individuals. The long-term effects of involvement are previously unreported by nurses.     

Development of a behavioural marker system for scrub practitioners' non‐technical skills (SPLINTS system)

Rationale, aims and objectives Adverse events still occur despite ongoing efforts to reduce harm to patients. Contributory factors to adverse events are often due to limitations in clinicians’ non‐technical skills (e.g. communication, situation awareness), rather than deficiencies in technical competence. We developed a behavioural rating system to provide a structured means for teaching and assessing scrub practitioners’ (i.e. nurse, technician, operating department practitioner) non‐technical skills. Method Psychologists facilitated focus groups (n = 4) with experienced scrub practitioners (n = 16; 4 in each group) to develop a preliminary taxonomy. Focus groups reviewed lists of non‐technical‐skill‐related behaviours that were extracted from an interview study. The focus groups labelled skill categories and elements and also provided examples of good and poor behaviours for those skills. An expert panel (n = 2 psychologists; n = 1 expert nurse) then used an iterative process to individually and collaboratively review and refine those data to produce a prototype skills taxonomy. Results A preliminary taxonomy containing eight non‐technical skill categories with 28 underlying elements was produced. The expert panel reduced this to three categories (situation awareness, communication and teamwork, task management), each with three underlying elements. The system was called the Scrub Practitioners’ List of Intraoperative Non‐Technical Skills system. A scoring system and a user handbook were also developed. Conclusion A prototype behavioural rating system for scrub practitioners’ non‐technical skills was developed, to aid in teaching and providing formative assessment. This important aspect of performance is not currently explicitly addressed in any educational route to qualify as a scrub practitioner.