Caring for adoptive families: lessons in communication

PURPOSE: To describe the experiences of families whose adopted children were hospitalized and to compare those experiences to the experiences of families of hospitalized biological children. METHOD: The parents of 10 adopted and 55 biological children participated in the study in which the source and intensity of stress for parents and the level of distress demonstrated by the children during their hospitalization were measured and compared. RESULTS: Adopted children hospitalized for the first time were significantly more distressed during hospitalization than biological children hospitalized for the first time. Adoptive parents experienced significantly more stress than biological parents related to how staff communicated with them about their child's illness. Concerns identified by several adoptive families included difficulties associated with having limited information about their child's family medical history and concerns about attachment issues. CONCLUSIONS: Health care providers need to be aware of adoptive parents' concerns about their child's response to hospitalization, attachment issues, and limited family medical history. The quality of communication with adoptive parents is especially important.     

Satisfaction with care: a study of parents of children with congenital heart disease and parents of children with other diseases

AIM: We compared parents of children with congenital heart disease (PCCHD, n=1092) with parents of children with other diseases (PCOD, n=112) regarding satisfaction with their children's care (SCC). We also examined the association between parental/patient characteristics and SCC. METHOD: The parents completed a questionnaire about such areas as satisfaction with care, children's health status, and financial situation. The design was cross-sectional and data were gathered over 20 consecutive days. RESULTS: The univariate and multivariate analyses showed that PCCHD were more satisfied with their children's medical care and waiting period for treatment of their ill children than PCOD, although the difference was only modest. Furthermore, mothers were less satisfied with staff attitudes than fathers, with the lowest satisfaction among mothers of children with CHD. However, the multivariate analysis indicated that less satisfaction with care was more associated with decreasing child age, unemployment, financial burden of disease, social isolation and psychological distress than with children's diseases, their severity and parental gender. CONCLUSION: We corroborated some previous findings and may have provided new insights regarding determinants of SCC among parents. Interventions to improve SCC may need to address issues of parental psychological distress, socialization, and financial burden of illness. Possible ways of achieving this are discussed. Finally, research in a longitudinal format is needed to further scrutinize determinants of parental SCC.     

Palmar skin conductance variability and the relation to stimulation,pain and the motor activity assessment scale in intensive care unit patients

Introduction

Many intensive care unit (ICU) patients describe pain and other adverse feelings that may impact long-term psychological morbidity. Sympathetically mediated palmar skin conductance variability is related to emotionally induced perspiration and correlates with pain levels in the perioperative setting but has not been studied in ICU patients.

Methods

Twenty non-intubated and 20 intubated general ICU patients were included in this observational study. Patients were monitored with the MED-STORM Pain Monitoring System^®. The number of skin conductance fluctuations per second (NSCF) was measured in parallel with bedside observation during one hour of intensive care, including rest, procedures and patient-staff interactions. Arousal-agitation level was monitored with the motor activity assessment scale (MAAS). Pain was monitored with the numeric rating scale (0 to 10) in patients able to communicate or by observation in patients unable to communicate.

Results

In non-intubated patients, NSCF increased with increasing stimulation/pain but also with higher MAAS (P = 0.002). An interaction effect was found, with increased NSCF response to stimulation/pain with increasing MAAS (P < 0.001).In intubated patients, NSCF increased significantly with increasing stimulation/pain (P < 0.001). In contrast to non-intubated patients, no difference in NSCF between MAAS levels was found for any given degree of stimulation in intubated patients.

Conclusions

In critically ill patients, NSCF may be more useful evaluating emotional distress rather than pain alone. It needs to be assessed whether NSCF monitoring is clinically useful and whether controlling emotional distress with the aid of such monitoring may impact on patient care and outcomes.     

Psychological outcomes and measurement of maternal posttraumatic stress disorder during the perinatal period

For many parents, labor, delivery, and/or the perinatal and neonatal periods present significant stressors that result in clinically significant parental feelings of psychological distress or trauma. This review article identifies known preexisting risk, and protective, factors for such distress, focusing on individual variables and familial or other social support networks. Research describing the full range of possible psychological reactions is also presented, loosely categorized as representing psychological outcomes of resiliency or growth, externalized distress, and internalized distress. These outcomes are viewed as neither linear nor mutually exclusive, and specific implications for each outcome are presented. The primary focus of this review is on the most well understood internalizing distress outcome during the perinatal period, maternal posttraumatic stress reactions. The utility of a brief, freely available measure quantifying such distress is also overviewed, including standards for its usage. Healthcare and particularly nursing staff are encouraged to attend to the range of possible psychological outcomes that may emerge during the perinatal period, identifying distressed mothers, so that they may be referred for care. The review concludes by presenting recommended future directions for research regarding the measurement of posttraumatic stress disorder in parents.     

小儿心脏术后监护期间父母压力及焦虑状况调查

目的 :探讨先天性心脏病 (CHD)小儿父母亲在小儿术后监护期间的压力及焦虑状态。方法 :应用状态 -特质焦虑量表(State -TraitAnxietyInventory ,STAI)及Miles监护病房父母压力量表 ,通过问卷调查方法对 34例CHD小儿父母的压力感受及情绪状态进行评估。结果 :父母亲在小儿监护期间压力主要有 5种 :小儿身体状况 ,与患儿分离 ,父母亲角色的改变 ,与医护人员的沟通 ,医疗费用 ;母亲所感受的压力程度大于父亲。结论 :小儿心脏术后监护期间父母亲的压力及焦虑状况应引起护理人员的重视 ,护理人员有必要为父母亲提供心理支持及健康教育     

Parents as distraction coaches during i.v. insertion: a randomized study

This study investigated the effectiveness of a brief Distraction Education intervention for parents prior to their preschool children's medical procedures. Forty-four preschool children with chronic non-life-threatening conditions were having intravenous catheters (IVs) placed for medical tests. Parent-child dyads were randomized into two groups. The experimental group received Distraction Education prior to IV insertion; the control group received standard care. Data were analyzed for two phases of the IV procedure. Phase 1 was the preparation for needle insertion; Phase 2 began with needle insertion. Experimental group parents used significantly more distraction than did control group parents during both phases (P < 0.001). There were no group differences for child behavioral distress or self-report of pain. There was a trend toward a group by phase interaction for behavioral distress (P = 0.07); more experimental group children showed decreased behavioral distress over time (from phase 1 to phase 2) than did control group children (P = 0.02).     

Hospital staff perceptions of parental involvement in paediatric hospital care

AIM: This paper reports a study of hospital staff perceptions of parental involvement in children's hospital care. BACKGROUND: Previous research has shown that parents are expected and encouraged by hospital staff to be actively involved in the care of their hospitalized children. At the same time, parents have expressed a need for improved communication with paediatric hospital staff to clarify both parental and staff expectations and preferences about this involvement. Few studies, however, have studied hospital staff perceptions of parental involvement in the care of hospitalized children and their implications for clinical work. METHODS: A cross-sectional questionnaire study was conducted among paediatric hospital staff in October of 2003. Questionnaires were distributed to a total of 338 staff, including all physicians, Registered Nurses and nursing auxiliaries working on oncology, surgery and neurology units in three university children's hospitals in Sweden. RESULTS: A total of 207 questionnaires were returned, yielding a response rate of 61%. Exploratory and confirmatory factor analyses of the 26-item questionnaire resulted in the creation of two indices, Work Routines and Work Strain. Oncology staff reported having better work routines for involving parents in their children's care and they experienced less strain from parental demands compared with staff on other paediatric units. Staff perceptions and workplace routines regarding parental involvement did not differ statistically significantly by profession or by length of work experience. CONCLUSION: Staff perceptions of parental involvement may be related to clinical specialty. Oncology units may find it easier to establish routines for parental involvement, thereby experiencing less work strain in their interactions with parents. There is a need to further study staff perceptions of parental involvement and their implications for the staff work situation in both Sweden and other countries.     

Test or trauma? The voiding cystourethrogram experience of young children

Many diagnostic procedures, while necessary and appropriate, may be experienced by a child as a trauma. Health care professionals often perceive invasive procedures such as surgery and needle biopsies as more painful and threatening to the child than "test" such as voiding cystourethrograms (VCUGs). However, clinical experience indicates that the VCUG is often perceived by children as more highly distressing than other procedures. Success and a sense of competence (or shame and doubt) in mastering challenging life experiences, such as medical procedures, contribute to a child's evolving self-concept (Harter, 1983). These memories and successful behaviors can be applied to future similar situations. Health care professionals are challenged to help the child and the parents through the procedure with minimal distress in an effective and efficient manner. A series of vignettes illustrating parents' and children's experiences with a VCUG procedure highlight the impact of the VCUG on children's coping ability and adjustment. Recommendations for developmentally appropriate clinical practice standards of care related to the VCUG procedure in young children also are presented. Preparation as an ongoing partnership process among children, parents, and health care professionals.     

When a child says 'no': experiences of nurses working with children having invasive procedures

Experiencing invasive medical procedures can be a devastating experience for some children and their parents. The potential impact on staff who perform the procedure and who may have to restrain the child who is unwilling to have an essential procedure is a neglected area of research. Children's distress and their coping are affected by those around them so it is important to understand how nurses react in these situations. AIM: To explore the experiences of nursing staff involved in facilitating invasive procedures for children who do not want them. METHOD: Participants were selected at random from staff lists of one hospital in the West Midlands. Data collection was undertaken using unstructured qualitative interviews with ten paediatric nurses and in two focus groups. Theories generated from each interview were tested and validated with participants in subsequent interviews and then in the focus groups. FINDINGS: The most common experiences reported by the participants were 'getting upset' and 'getting stressed' by some aspect of the medical procedure, either because the child or parents became upset or the procedure had gone wrong in some way. Procedural protocols that exist to protect children, for example, by limiting the number of unsuccessful attempts to undertake the procedure, also protect staff by providing a framework to manage emotions during the procedure. Being able to explain the process and need for the procedure to the child and parents, obtaining consent where possible for the use of certain techniques, such as restraint, and having the time to adequately prepare a child for a procedure, all helped minimise the likelihood of an unsuccessful procedure, thereby reducing the risk of the nurse being emotionally affected by a distressed child. CONCLUSION: Nurses working with children who are unwilling to undergo invasive procedures experience negative emotions but these are short lived due to a combination of protective factors and coping strategies. Further research is needed to understand the experiences of medical staff and of nurses working outside paediatric environments who may not experience the same support and protection as those in paediatric settings.     

Evaluating a family-centred intervention for infant sleep problems

AIM: This paper reports a study to describe changes in parents' distress after a family-centred intervention for sleep problems of infants. BACKGROUND: Infant sleep problems are common and are related to depressive symptoms in mothers, but their impact on fathers has rarely been studied. Because childhood sleep problems and parental distress are associated, their interdependence should be recognized in research and in paediatric sleep practice. METHODS: All children hospitalized for sleep problems in a hospital in Iceland in 1997-1998 and their parents were studied using a pre- and post-test quasi-experimental design. The sample consisted of 33 infants (6-23 months of age), 33 mothers and 30 fathers. Parents' distress was assessed before and after treatment with regard to: (1) fatigue and resulting symptom distress; (2) parenting stress; (3) state-anxiety; and (4) depressive symptoms. Infants were treated for a variety of sleep problems by a paediatric nurse. The parents were simultaneously treated for distress by either the paediatric nurse or a specialist, depending on the nature of their problems. RESULTS: Mothers and fathers experienced a high degree of distress before the intervention, with no significant difference between them. Two months after the intervention both parents' distress had significantly improved. Parents' degree of distress was at a psychopathological level before the intervention but was reduced to population norms 2 months after the intervention. The paediatric nurse intervention was sufficient to reduce distress for 83% of parents. CONCLUSIONS: Health care professionals who care for infants with sleep problems should pay attention to the distressed responses of parents and support their recovery. An intervention such as that described here could be used by nurses for this purpose.     

The impact of the social and physical environments on parent–healthcare provider relationships when a child dies in PICU: Findings from a grounded theory study

ObjectivesThis study explores the influences of the paediatric intensive care environment on relationships between parents and healthcare providers when children are dying. It forms part of a larger study, investigating parental experiences of the death of their child in intensive care.Research methodologyConstructivist grounded theory.SettingFour Australian paediatric intensive care units.Main outcome measuresAudio-recorded, semi-structured interviews were conducted with twenty-six bereaved parents. Data were analysed using the constant comparison and memoing techniques common to grounded theory.FindingsThe physical and social environment of the intensive care unit influenced the quality of the parent–healthcare provider relationship. When a welcoming, open environment existed, parents tended to feel respected as equal and included members of their child’s care team. In contrast, environments that restricted parental presence or lacked resources for parental self-care could leave parents feeling like ‘watchers’, excluded from their child’s care.ConclusionsThe paediatric intensive care unit environment either welcomes and includes parents of dying children into the care team, or demotes them to the status of ‘watcher’. Such environments significantly influence the relationships parents form with healthcare staff, their ability to engage in elements of their parental role, and their experiences as a whole.     

Professionals' perceptions of children's participation in decision making in healthcare

The purpose of this study was to identify factors of importance for children's participation in medical and nursing care. A method close to the critical incident technique was used. A total of 92 stories told by staff and containing different levels of children's participation in decision making were analysed. The factors affecting children's participation in decision making were grouped into six categories: the child's protest, the child's age and maturity, the role of parents, attitudes of staff, the time factor and alternative solutions to the problem. This study shows that in certain cases children can affect their situation, bus also that violating actions are performed on children.     

One single dose of etomidate negatively influences adrenocortical performance for at least 24 h in children with meningococcal sepsis

Objective To investigate the effect of one single bolus of etomidate used for intubation on adrenal function in children with meningococcal sepsis. Design Retrospective study conducted between 1997 and 2004. Setting University-affiliated paediatric intensive care unit (PICU). Patients and participants Sixty children admitted to the PICU with meningococcal sepsis, not treated with steroids. Interventions Adrenal hormone concentrations were determined as soon as possible after PICU admission, and after 12 h and 24 h. To assess disease severity, PRISM score and selected laboratory parameters were determined. Measurements and main results On admission, before blood was drawn, 23 children had been intubated with etomidate, 8 without etomidate and 29 were not intubated. Children who were intubated had significantly higher disease severity parameters than those not intubated, whereas none of these parameters significantly differed between children intubated with or without etomidate. Children who received etomidate had significantly lower cortisol, higher ACTH and higher 11-deoxycortisol levels than those who did not receive etomidate. Arterial glucose levels were significantly lower in children who were intubated with etomidate than in non-intubated children. When children were intubated with etomidate, cortisol levels were 3.2 times lower for comparable 11-deoxycortisol levels. Eight children died, seven of whom had received etomidate. Within 24 h cortisol/ACTH and cortisol/11-deoxycortisol ratios increased significantly in children who received etomidate, but not in children who did not, resulting in comparable cortisol/ACTH ratios with still significantly lowered cortisol/11-deoxycortisol ratios 24 h after admission. Conclusions Our data imply that even one single bolus of etomidate negatively influences adrenal function for at least 24 h. It might therefore increase risk of death.     

Caregiver distress. Related to disruptive behaviors on special care units versus traditional long-term care units.

The link between staff stress and exposure to disruptive behaviors is an important issue in long-term care settings. This study compared the perceptions of two groups of formal caregivers (staff) regarding their distress from the behaviors of residents in their care. Staff on special care units for dementia were less distressed with disruptive behaviors than comparable staff on traditional units, although they reported higher exposure to these behaviors. These results were related to different perceptions of intent to harm and expectations of physical aggression as "part of the job." Implications for nursing include education and support for staff to enhance the quality of life for residents and staff on units where disruptive behaviors occur.     

The effects of guided written disclosure on psychological symptoms among parents of children with cancer

This study examines whether structured writing about receiving a diagnosis and treatment for pediatric cancer reduces distress among highly distressed parents of children with cancer (PCWC). Eight PCWC completed measures of posttraumatic stress symptoms (PTSS) and depressive symptoms at two baselines, and again after writing, with 1-month gaps between assessments. Using a guided disclosure protocol (GDP), parents were asked to write about receiving the diagnosis first in a chronological manner, then to explicitly label their emotions at the time of diagnosis and explain the impact of the child's illness on their life. Finally, they were asked to reflect on current feelings, future coping ability, and personal growth. Although symptoms of distress did not change between baselines, significant reductions were found in PTSS from the first baseline to postwriting, but not in depression. This preliminary study suggests that the GDP may reduce PTSS in distressed PCWC.     

Parents' perspectives of asthma crisis hospital management in infants and toddlers: an interpretive view through the lens of attachment theory

Interpretive phenomenology and attachment theory were used to discover the underlying concerns of parents and children during children's hospitalization for asthma. Home interviews were conducted with families of low income and with Latino and African-American infants and toddlers with severe persistent asthma. Narratives revealed that asthma crises were fearsome situations for parents and children. Hospital procedures escalated fear in children. Parents, agonized by their children's suffering, were embarrassed by feelings of helplessness. Results imply that effective, efficient care depends on addressing parents' fears, being aware of their sensitivity to the suffering of their children, and supporting their desire to alleviate it.     

Exploration of variables related to children's behavioral distress during electrodiagnosis.

To investigate variables potentially related to children's distress during electromyography/nerve conduction studies (EMG/NCS), mothers of 39 children ages two to 17 years reported the child's gender, experience with EMG/NCS, previous negative medical/dental experiences, general response to painful procedures, information-seeking style prior to procedures, health care fears, and information about the mothers' own health care fears and their anxiety regarding EMG/NCS. Physicians who performed the studies completed a behavioral distress checklist for each child. Results indicated that children exhibiting more behavioral distress were younger, had been uncooperative with previous painful procedures, were more likely to have had more negative medical/dental experiences, and had mothers who themselves reported greater fear and anxiety about undergoing EMG/NCS. Regression analyses indicated that previous negative medical/dental experiences accounted for additional variance in distress beyond that attributed to the child's age. Significant positive correlations between children's distress and specific previous negative medical/dental experiences were found.     

Hospital care of children in four countries

BACKGROUND: While perceptions of parents and staff about care of hospitalized children have been explored in developed countries, little research has examined these in developing countries. Assumptions about family-centred care are often based on Western values, with little evidence of how cultural constructs affect care delivery in developing nations. AIM: This paper reports a study to provide evidence from which culturally-appropriate hospital care for children can be delivered. METHODS: Using a rigorously devised and trialed questionnaire, attitudes of staff and parents about the way children are cared for in children's hospitals in four countries were examined and subjected to a four way analysis: parents and staff within and between developed and developing countries. RESULTS: There were no questions where all parents and staff in both developed and developing country groups were in complete agreement. However, there was some indication that, while culture plays a major role in paediatric care delivery, basic concepts of family-centred care are similar. CONCLUSIONS: The findings are limited by the sampling strategy. Nevertheless, while differences were found between parents' and staff's expectations of the delivery of care to children in hospitals, similarities existed and the influence of culture cannot be ignored. Education programmes for staff and parents should reflect these influences to ensure the optimum delivery of family-centred care, regardless of where the hospital is situated.     

Reliability and validity of the Chinese version of the behavioral pain scale in intubated and non-intubated critically ill patients: Two cross-sectional studies

BackgroundSelf-report pain assessment scales may be inappropriate when critically ill patients are incapable of adequate communication because of sedation or mechanical ventilation. The Behavioral Pain Scale (BPS, for intubated patients) and the BPS-non intubated (BPS-NI, for non-intubated patients) measure objective behavioral indicators of pain in non-communicating critically ill patients.ObjectivesTo develop a Chinese version of the BPS combining the original version of the BPS and BPS-NI suitable for pain assessment among critically ill patients and to determine its reliability and validity.DesignTwo cross-sectional studies.SettingsA 15-bed surgical intensive care unit (ICU) in a teaching hospital in Beijing, China.ParticipantsIn the first study, 129 patients (53 intubated and 76 non-intubated) were recruited; in the second study, 83 (43 intubated and 40 non-intubated) were recruited.MethodsThe Chinese version of the BPS (BPS-C) was developed via rigorous translation methods, including double back-translation and content validation involving 13 clinical experts. Internal consistency, discriminative validity, and criterion-related validity were established using the BPS-C and the Numeric Rating Scale (NRS). The BPS-C and NRS were used to assess pain in 53 intubated and 76 non-intubated post-abdominal surgery patients during low pain exposure and increased pain exposure in the first study. To establish interrater reliability, a researcher and a bedside nurse independently performed 172 paired assessments in 43 intubated patients and 160 paired assessments in 40 non-intubated patients with the BPS-C under the same conditions in the second study.ResultsThe BPS-C achieved conceptual and semantic equivalence with the original tool. Internal consistency was established through Cronbach's alpha (α = 0.724–0.743 in intubated patients, α = 0.701–0.762 in non-intubated patients). Interrater reliability was confirmed through the intraclass correlation coefficients (ICCs), which ranged from 0.962 to 1.000 in both intubated and non-intubated patients with high agreement percentages (95.3–100.0% in intubated and 95.0–100.0% in non-intubated patients). BPS-C scores during increased exposure to pain were significantly higher than those obtained during low exposure to pain, indicating discriminative validity. Criterion-related validity was confirmed by strong positive correlations between BPS-C and NRS scores (Pearson's correlations r = 0.815–0.937 for intubated patients, Pearson's correlations r = 0.755–0.899 for non-intubated patients).ConclusionsThe Chinese version of the BPS (BPS-C) is appropriate for pain assessment among intubated and non-intubated ICU patients.