Cohen, Robin, Leis, Anne M., Kuhl, David, Charbonneau, Cécile, Ritvo, Paul et Ashbury, Fredrick D. 2006. «QOLLTI-F: Measuring Family Carer Quality of Life ». Palliative Medicine, vol. 20, no 8, p. 755-767.
Intentions : « The purpose of this article is to report the results of a multimethod study conducted over three phases to design a psychometrically and conceptually valid instrument to measure the QOL of carers of cancer patients receiving palliative care. » (p. 756)
Échantillon/Matériau : « Participants were carers from 12 Canadian palliative care services who were asked to complete QOLLTI-F on three occasions. » (p. 755) « A total of 245 carers completed QOLLTI-F + the two global items. One hundred and forty-nine carers completed the questionnaires on all three occasions, 51 completed them twice and 45 completed them only once. A total of 594 questionnaires were completed. » (p. 761)
Instruments : Le QOLLTI-F (Quality of Life in Life Threatening Illness - Family Carer Version)
Type de traitement des données : Analyse de contenu et analyse statistique
« The primary goal of palliative care is to optimize the quality of life (QOL) of people living with a life-threatening illness and that of their families. While there have been important advances in measurement of the QOL of palliative care patients, little attention has been paid to the QOL of their carers (family caregivers). To develop and deliver the most effective services to these carers, their QOL needs to be measured with acceptable and psychometrically sound instruments that have content validity. [...] This study reports three phases of the development and testing of such a measure: QOLLTI-F, Quality of Life in Life Threatening Illness - Family Carer Version, simultaneously in English and French. [...] QOLLTI-F is unique in that in measuring one person’s QOL (the carer’s) it includes their perception of the condition of another (the patient). This attests to the close relationship between the two. It is also unique in that its content is derived from a qualitative study asking carers what is important to their own QOL, rather than focusing on the changes or burdens related to caregiving. QOLLTI-F also has the advantage of being briefer than other carer QOL measures. It contains measures of seven different domains that are determinants of carer QOL, in addition to a summary score. All these measures are valid, reliable and responsive to change in QOL. » (p. 755)
Parental Perspectives on Hospital Staff Members’ Acts of Kindness and Commemoration after a Child’s Death
Référence bibliographique 
Macdonald, Mary Ellen, Liben, Stephen, Carnevale, Franco A., Rennick, Janet E., Wolf, Susan L., Meloche, Donald et Cohen, Robin. 2005. «Parental Perspectives on Hospital Staff Members’ Acts of Kindness and Commemoration after a Child’s Death ». Pediatrics, vol. 116, no 4, p. 884-890.
Intentions : « Acts of kindness and commemoration by staff members often follow the death of a patient. Acts include attending funerals, sending sympathy cards, sending cards on birthdays/anniversaries, telephoning/visiting family homes, and attending memorial services. This study explores the significance of these acts for bereaved parents. » (p. 287)
Échantillon/Matériau : « Twelve parents whose children died in the ICU of a tertiary care pediatric hospital were interviewed, to explore their experiences of the death. » (p. 287)
Instruments : « A semistructured interview guide was then created with the intention of eliciting family experiences of the illness and subsequent death of the child. » (p. 885)
Types de traitement des données : Analyse de contenu
« Three themes emerged regarding parental experiences of staff members’ acts, ie, (1) parents placed great importance on the hospital’s memorial service and on staff members’ presence at the service; (2) parents found it difficult to return to the hospital after the child’s death but all attended the memorial service, finding some closure in the return; and (3) parents appreciated receiving cards and greatly valued staff members’ efforts to telephone/visit and to attend the funeral. Months later, parents remembered positively which staff members engaged in which activities. Conversely, parents expressed disappointment when staff members did not engage in these activities and/or were absent from memorial/funeral services. […] Efforts to support families and to commemorate deceased children are appreciated by bereaved parents. Staff members’ absences at commemorative events and a lack of supportive acts are noticed and regretted by families. Staff members and program administrators should attempt to arrange workloads to ensure meaningful contact between staff members and parents during the bereavement period. » (p. 287)