Linda J. Kristjanson

Validity and reliability testing of the FAMCARE scale: measuring family satisfaction with advanced cancer care

The purpose of the study was to test the validity and reliability of the FAMCARE Scale which was developed to measure family satisfaction with advanced cancer care. The FAMCARE Scale was developed based upon earlier qualitative research which identified indicators of family care satisfaction and a subsequent Q-sort study that reduced those items to the most salient indicators of satisfaction according to a larger, representative sample (N = 210). A pilot test of the FAMCARE Scale using a convenience sample of 30 family members of advanced cancer patients was conducted. The scale achieved internal consistency estimates of 0.93 at two testing times, a test-retest correlation of 0.91, and estimates of criterion validity using the McCusker Scale of 0.80 and 0.77. Cluster analysis of the scale suggested 4 subdimensions. Although the scale requires further testing to establish its reliability and validity, these preliminary results indicate that the scale may be a psychometrically sound instrument useful for measurement of family satisfaction with advanced cancer care.

Perceptions of symptom distress in lung cancer patients: I. Congruence between patients and primary family caregivers

Part I of this two-part paper employs a comparative design to compare primary family caregivers assessments of lung cancer patients symptom distress with patients own perceptions of symptom distress in the home setting. Part II describes the results of the qualitative component of this research. A convenience sample of 37 patient-family caregiver dyads completed the McCorkle and Young Symptom Distress Scale (SDS). Family caregivers global scores were moderately correlated with patients global scores (r = 0.71; P < 0.001). No significant differences in ratings were found for ten of the 13 symptoms assessed. Therefore, when the patient is unable to provide a self-report of symptom distress, health-care professionals may seriously consider family caregivers assessments of patients symptom distress to be reasonable estimates for at least ten of the 13 symptoms on the SDS.

A young child's pain: how parents and nurses 'take care'

A qualitative study was undertaken to describe how parents and nurses respond to hospitalized young children experiencing pain from surgical interventions. Participant observation was used to identify care behaviours and the care context within which the children experienced, and caregivers witnessed, post-operative pain. Interviews with parents, nurses, and children were also conducted during the observation periods and prior to discharge to augment the observational data. Care provided by parents included comfort measures and vigilant monitoring of the childrens pain. Nurses primarily provided technical care, used limited pain assessment approaches, and were not able to adequately alleviate the childrens pain. Factors, strategies, and feelings associated with these care behaviours are described. The most salient recommendations arising from these findings are that nurses: (a) be provided with education about pain assessment and management, and (b) be empowered by policies that allow them to sensitively and effectively respond to children in pain.

Psychosocial issues in palliative care: The patient, the family, and the process and outcome of care

This article presents a synopsis of the psychosocial needs of patients and families in the terminal phase of malignant disease, as well as approaches to auditing the care of these clients. Recommendations for future research from the National Cancer Institute of Canada Workshop on Symptom Control and Supportive Care in Patients with Advanced Cancer are presented. These include recommendations on the need for more effective tools to measure the symptoms and burden of illness; an improved taxonomy to describe terminal illness; and studies to (1) measure the impact of interventions for improved symptom relief on the psychosocial distress of patients and families, (2) determine the impact of psychosocial interventions on the symptomatology associated with terminal illness, (3) operationalize good palliative care and the optimal delivery of palliative care, (4) assess the auditing of palliative care, (5) develop family typologies of adaptation to terminal illness, (6) describe high risk families, and (7) measure the impact of staff support programs on improving patient/family care.

“Getting better from my hurts”: Toward a model of the young child's pain experience

A qualitative grounded theory method was used to examine hospitalized childrens experiences of acute pain. Understanding the childrens pain experiences included identifying childrens responses, factors influencing childrens responses, and the meanings children associated with their pain experiences. A sample of 11 surgical pediatric patients, 2-1/2 to 6-1/2 years of age, participated. Data collection methods included participant observation, informal and formal interviews, play interviews, hospital chart reviews, and use of a reflexive journal. Data analysis was based on the constant comparative method. Findings revealed that the pain experience determined how the overall hospitalization was experienced by the children. Getting better was identified as the basic psychosocial process children used to deal with the pain. A beginning model of the young childs pain experience was developed and is presented here.

Perceptions of symptom distress in lung cancer patients : II. Behavioral assessment by primary family caregivers

Literature on assessment of symptom distress has focused primarily on patients and nurses perceptions in the hospital setting. To date, no research has examined behavioral measurement and cues that primary family caregivers respond to when assessing patients level of distress arising from individual symptoms in the home setting. The qualitative data obtained from 37 primary family caregivers of patients with lung cancer was designed to augment quantitative results discussed elsewhere. Content analysis was performed on written responses to an open-ended questionnaire in which family caregivers identified cues that they responded to when assessing patients distress from symptom items. The results identified the categories of impaired functioning and verbal cues as the most frequent indices of symptom distress. This study documents that certain behavioral measures for assessing symptom distress may be clinically useful to observers. Primary family caregivers are shown in this study to take a limited multidimensional approach in the assessment of patients distress from symptoms.