Patricia McKeever

Photo Elicitation Interview (PEI): Using Photos to Elicit Children's Perspectives

When conducting photo elicitation interviews (PEI), researchers introduce photographs into the interview context. Although PEI has been employed across a wide variety of disciplines and participants, little has been written about the use of photographs in interviews with children. In this article, the authors review the use of PEI in a research study that explored the perspectives on camp of children with cancer. In particular, they review some of the methodological and ethical challenges, including (a) who should take the photographs and (b) how the photographs should be integrated into the interview. Although some limitations exist, PEI in its various forms can challenge participants, trigger memory, lead to new perspectives, and assist with building trust and rapport.

SIBLINGS OF CHRONICALLY ILL CHILDREN

A review of the literature provides the basis for a depiction of the life situation of the sibling of a child with a chronic disability or health problem. Childrens responses to a siblings illness and the factors associated with these responses are discussed. Major implications for researchers and clinicians are identified.A review of the literature provides the basis for a depiction of the life situation of the sibling of a child with a chronic disability or health problem. Childrens responses to a siblings illness and the factors associated with these responses are discussed. Major implications for researchers and clinicians are identified.

Procedural pain in newborns at risk for neurologic impairment

In the past decade, our knowledge of pain in newborn infants has advanced considerably. However, infants at significant risk for neurologic impairment (NI) have been systematically excluded from almost all research on pain in neonates. The objectives of this study were to compare: (a) the nature, frequency and prevalence of painful procedures, (b) analgesics and sedatives administered, and (c) the relationship between painful procedures and analgesia for neonates at risk for NI. One hundred and ninety‐four infants at high (cohort A, n=67), moderate (cohort B, n=59) and low (cohort C, n=68) risk for NI from two tertiary level Neonatal Intensive Care Units in Canada were included in a retrospective cohort study on the first 7 days of life. Data were collected from medical records and analyzed using chi‐square, ANOVA and regression approaches. All cohorts had a mean of >10 painful procedures per day during the first 2 days of life. There was an interaction effect between cohort group and day of life (F5,188=2.13, P<0.06) with cohort A having significantly more painful procedures on day 1 (F2,191=4.79, P<0.009). There was no statistical difference in the number of infants who received continuous infusion (F2,20=1.9, P=0.13) or bolus (F2,20=1.3, P=0.25) opioids or sedatives (F2,20=0.45, P=0.84) by cohort over the 7 day period. There was a statistical difference in bolus opioid administration for days 1 (P<0.05) and 2 (P<0.001) with less than 10% of infants in cohort A receiving bolus opioids compared with approximately 22–33% of infants in cohorts B and C. There was a statistically significant correlation between painful procedures and analgesic use (r=0.29, P<0.001), although significant associations existed for cohorts B and C only. The number of painful procedures and study site primarily accounted for the variance (61% in cohort B and 35% in cohort C) in analgesic use, while in cohort A, only study site contributed to the variance (16%). Neonates at the highest risk for NI had the greatest number of painful procedures and the least amount of opioids administered during the first day of life. There was no relationship between painful procedures and analgesic use in this group. As these infants are vulnerable to pain and its consequences, the rational underlying health professional strategies regarding painful procedures and analgesic use for procedural pain in this population urgently awaits exploration.

Comparison of Pain Responses in Infants of Different Gestational Ages

Background: There is a plethora of infant pain measures; however, none of them have been validated for extremely low for gestational age (ELGA) infants (<27 weeks’ gestation). To date, clinicians, researchers and parents use information gleaned from more mature infants to make inferences about pain in ELGA infants. Using physiological or behavioral pain indicators derived from more mature infants may lead to inaccurate assessments and management. Objectives: To compare physiological (heart rate, oxygen saturation) and behavioral (9 facial activities, cry) pain indicators of ELGA infants with infants of varying more mature gestational ages (GAs). Methods: The aim was to determine the effects of GA on pain response. GA was categorized into four mutually exclusive strata: <27 6/7 weeks, 28–31 6/7 weeks, 32–35 6/7 weeks and >36 weeks. Physiological data during four phases of a routine heel lance were collected by placing disposable ECG electrodes and pulse oximetry probes on the infant’s chest. Behavioral data were collected by videotaping facial activities, and cry data were collected by audio recording. Results: Four facial activities (brow bulge, eye squeeze, nasolabial furrow, vertical mouth stretch) in response to acute pain were present in ELGA infants. Facial activities increased following painful procedures and the magnitude of responses was proportional to GA with the youngest infants (<27 6/7 weeks GA) showing the least amount of change. Decreased oxygen saturation and increased heart rate were associated with the most invasive phase of the heel lance; however, the differences were neither clinically or statistically significant across age groups. Cry was not a sensitive pain indicator in ELGA infants, due to the presence of endotracheal tubes in this high-risk population. Discussion: ELGA infants have similar pain responses to older infants, but the responses are dampened. Other factors such as severity of illness, frequency of painful procedures or medication use should be examined, as they may influence the pain responses in ELGA infants.

Testing a new theory of patient satisfaction with treatment outcome.

Objectives:Theories of patient satisfaction with treatment outcome have not been developed and tested in healthcare settings. The objectives of this study were to test a new theory linking patient satisfaction and embodiment (body—self unity) and examine it in relation to other competing theories. Design:We conducted a prospective cohort study. Setting:This study was conducted at a tertiary care hospital. Patients:We studied 122 individuals undergoing elective hand surgery. Methods:Satisfaction with treatment outcome approximately 4 months after surgery was examined against the following factors (representing 7 theories of satisfaction): 1) overall clinical outcome, 2) patients’ a priori self-selected important clinical outcomes, 3) foresight expectations, 4) hindsight expectations, 5) psychologic state, 6) psychologic state in those with poor outcomes, and 7) embodiment. Analysis:Seven hypotheses were tested first using univariate analyses and then multivariable regression analysis. Results:Satisfaction with treatment outcome was significantly associated with embodiment. Three confounders—the extent to which surgery successfully addressed patients’ most important reason for surgery, hindsight expectations, and workers’ compensation—were also significant. The final model explained 84% of the variance in a multidimensional measure of satisfaction with treatment outcome. Conclusion:This research suggests that satisfaction with treatment outcome could be facilitated by developing strategies to improve body–self unity, and eliciting and addressing the patients most important reason for undergoing treatment.

Using participant observation in pediatric health care settings: ethical challenges and solutions

Participant observation strategies may be particularly effective for research involving children and their families in health care settings. These techniques, commonly used in ethnography and grounded theory, can elicit data and foster insights more readily than other research approaches, such as structured interviews or quantitative methods. This article outlines recommendations for the ethical conduct of participant observation in pediatric health care settings. This involves a brief overview of the significant contributions that participant observation can bring to our understanding of children and families in health care settings; an examination of the elements of participant observation that are necessary conditions for its effective conduct; an outline of contemporary ethical norms in Canada, the United Kingdom and the United States for research in pediatric health care settings; and a discussion of how participant observation research should be operationalized in order to comply with these norms.

Children's experiences of parental mental illness: a literature review

Aim: This paper provides a review of published qualitative research on childrens experiences of parental mental illness.

Determining behavioural and physiological responses to pain in infants at risk for neurological impairment.

Abstract Multiple researchers have validated indicators and measures of infant pain. However, infants at risk for neurologic impairment (NI) have been under studied. Therefore, whether their pain responses are similar to those of other infants is unknown. Pain responses to heel lance from 149 neonates (GA > 25–40 weeks) from 3 Canadian Neonatal Intensive Care units at high (Cohort A, n = 54), moderate (Cohort B, n = 45) and low (Cohort C, n = 50) risk for NI were compared in a prospective observational cohort study. A significant Cohort by Phase interaction for total facial action (F(6,409) = 3.50, p = 0.0022) and 4 individual facial actions existed; with Cohort C demonstrating the most facial action. A significant Phase effect existed for increased maximum Heart Rate (F(3,431) = 58.1, p = 0.001), minimum Heart Rate (F(3,431) = 78.7, p = 0.001), maximum Oxygen saturation (F(3,425) = 47.6, p = 0.001), and minimum oxygen saturation (F(3,425) = 12.2, p = 0.001) with no Cohort differences. Cohort B had significantly higher minimum (F(2,79) = 3.71, p = 0.029), and mean (F(2,79) = 4.04, p = 0.021) fundamental cry frequencies. A significant Phase effect for low/high frequency Heart Rate Variability (HRV) ratio (F(2,216) = 4.97, p = 0.008) was found with the greatest decrease in Cohort A. Significant Cohort by Phase interactions existed for low and high frequency HRV. All infants responded to the most painful phase of the heel lance; however, infants at moderate and highest risk for NI exhibited decreased responses in some indicators.

Understanding the Meaning of Satisfaction With Treatment Outcome

Objective:Although satisfying patients is an important goal in health care, what is meant by satisfaction in relation to treatment outcome is not clear. The objective of this study was to explore patients’ perspectives on the meaning of satisfaction with treatment outcome. Design:We conducted a qualitative exploratory study. Setting:This study was conducted at an adult tertiary care hospital. Patients:Individuals who had undergone elective hand surgery were included in this study. Intervention:In-depth, open-ended interviews in which 31 participants described their experience of a hand condition, how they evaluated the outcome of surgical interventions, and what it meant to be satisfied or dissatisfied with these outcomes were examined. Analysis:Interview transcripts were analyzed using Gadows conceptualization of embodiment states: “object body” (disunity between the affected hand and the self) or “cultivated immediacy” (harmony between the hand and the self). Results:Eight of 9 dissatisfied individuals were categorized as “object body” and 15 of 19 satisfied individuals were in, or in transition to, “cultivated immediacy.” These states fluctuated and were also dependent on context (eg, social setting) and time since surgery. Conclusion:In relation to the outcome of hand surgery, satisfaction was experienced as a relative lack of tension between the patients sense of self and the affected hand (ie, satisfaction was having a hand that could be lived with unself-consciously). Emotional and social effects of interventions and the influence of context should be considered in future measures of satisfaction with treatment outcome. Finally, interventions directed toward facilitating patients’ experience of body–self unity could promote satisfaction with treatment outcome.

What we know (and do not know) about raising children with complex continuing care needs.

ventilators and nutrition systems allow many children to survive diseases and injuries previously considered fatal. Most are cared for in their homes, where they are cherished members of their families. These children have complex continuing care needs that stem from multi-organ system involvement and cognitive and/or developmental problems. Incidence and prevalence rates are unknown because different terms are used to classify this small but growing pediatric population. Each of us has conducted research with these families in Canada, the US and UK respectively. Although these countries have different models of health and social service provision, our findings are similar. Our combined findings corroborate those of other researchers, indicating that radically new forms of childhood, parenthood and family life have been created, but are poorly understood. We know that these children commonly receive sub-optimal long-term care because they ‘fall between the cracks’ due to ambiguous categories, exclusionary criteria or service gaps. Nevertheless, most parents emphasize the important benefits that they derive from raising them and the enhancements they make to family life. However, daily life is extremely constrained also by extraordinary physical, psychological, social and financial challenges. EDITORIAL