Walsh, K., Jones, L., Tookman, A., Mason, C., McLoughlin, J., Blizard, R., & King, M. (2007). Reducing emotional distress in people caring for patients receiving specialist palliative care: Randomised trial. British Journal of Psychiatry, 190, 142–147.doi:10.1192/bjp.bp.106.023960
To evaluate the success of additional professional team member weekly home visits, beyond support provided via specialist palliative care, on carer distress, burden, quality of life, satisfaction with care, and bereavement outcome
Carers were randomly assigned to either a control group (usual care = specialist palliative care team help and support in the home and clinic) or an intervention group (usual care plus a trained carer advisor who privately met with the carer to deliver advice and support outside the home and address domains of carer need each week over a six-week period). Carers completed mailed questionnaires (three instruments at 4, 9, and 12 weeks after randomization to group). Brief, semistructured interviews with carers at the final assessment time provided information about acceptability and satisfaction with the intervention.
An experimental design with generalized linear latent and mixed models (GLLAMM) approaches was used, as well as repeated measures with a brief intervention.
* No reliability or validity data were given in the article with study use; references appear to address this area.
About 30% of carers in both the control and intervention groups decreased their GHS-28 scores to show less stress at each assessment point in the study. Mean GHS-28 scores dropped at 4- and 9-week assessment times but then increased by the 12-week assessment. The intervention group appeared to experience greater but statistically nonsignificant improvement in GHS-28 scores as compared to the usual care control group. GLLAMM, used to more specifically analyze the influence of the intervention on GHS scores, did not show any significant interaction effects of time and treatment. By the end of the study, 40% of patients had died. Carers noted the emotional support provided by the trained advisor as most beneficial, 20% noted that the intervention came “too late” to help, and almost 30% noted that more advisor sessions would have been helpful.
This study offers insight into the difficulties of collecting data on an intervention with carers who assume responsibility for a patient receiving palliative care due to a diagnosis of cancer. The fact that more 60% of carers scored above the threshold on the GHS-28 at baseline indicates that many carers show strain and would benefit from professional help during the cancer end-of-life journey. Results of this study did not show significant effects of the intervention, although a percentage of subjects identified that the intervention was helpful. It is not clear how different this intervention was from the usual care, which was provided by clinicians specialized in palliative care.
It is not clear whether the three instruments used in this study accurately assessed the variables of interest due to absence of information on the instruments in the article. For example, the authors wished to measure burden but used an instrument to measure strain. One must ask if these terms are conceptually equivalent to support use of the Carer Strain instrument to meet the aims of this study.
It is not clear whether each carer in the intervention received a tailored six-week program or whether all carers in that group received “all domains of care” (p. 143). It also is not clear how the intervention changed when it was delivered outside the home and perhaps in a carer’s workplace where distractions and lower privacy might exist (influences on external validity of study). The lack of specificity about differences between usual care (specialist palliative care teams) and the carer advisor intervention leads one to understand study findings of no significant effect with the brief intervention. One wonders if the use of ECOG scores obtained on patients could have predicted inclusion of carers who would have had a greater chance of concluding the study with a viable family member.
Additional investigation of effective interdisciplinary interventions to improve the quality of life of carers engaged with end-of-life care must be completed to uncover needs of carers during that vulnerable time, and to determine the most appropriate timing of such interventions This study indicated that carer quality of life deteriorated over the 12 weeks of the study despite a professionally trained carer advisor. The authors added valuable information about ways to refine their intervention to be useful in future studies. Continued search for evidence-based components of an intervention, optimal frequency and intensity (as well as sites for delivering it), and assessments throughout the intervention to determine its effectiveness will help support improved care for carers who commit to others despite their own grief.