Karen Hancock

Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review

Many health professionals (HPs) express discomfort at having to broach the topic of prognosis, including limited life expectancy, and may withhold information or not disclose prognosis. A systematic review was conducted of 46 studies relating to truth-telling in discussing prognosis with patients with progressive, advanced life-limiting illnesses and their caregivers. Relevant studies meeting the inclusion criteria were identified by searching computerized databases (MEDLINE, EMBASE, CINAHL, PsychINFO and Cochrane Register of Controlled Trials) up to November 2004, with handsearching of studies, as well as inclusion of studies satisfying selection criteria reported in 2005 by the authors. The reference lists of identified studies were hand-searched for further relevant studies. Inclusion criteria were studies of any design evaluating communication of prognostic information that included adult patients with an advanced, life-limiting illness; their caregivers; and qualified HPs. Results showed that although the majority of HPs believed that patients and caregivers should be told the truth about the prognosis, in practice, many either avoid discussing the topic or withhold information. Reasons include perceived lack of training, stress, no time to attend to the patients emotional needs, fear of a negative impact on the patient, uncertainty about prognostication, requests from family members to withhold information and a feeling of inadequacy or hopelessness regarding the unavailability of further curative treatment. Studies suggest that patients can discuss the topic without it having a negative impact on them. Differences and similarities in findings from different cultures are explored. Palliative Medicine 2007; 21: 507—517

Anxiety and depression over the first year of spinal cord injury: a longitudinal study.

The literature concerning the psychological consequences following spinal cord injury (SCI) indicates a discordance between clinical impressions and empirical research. Although many studies report that psychological morbidity is not an inevitable consequence of SCI, much of this research is characterised by methodological inadequacies and the conclusions are therefore tenuous. The present study assessed 41 persons with SCI for depression and anxiety using objective psychological measures on three occasions over the first year of SCI and compared them with 41 able bodied controls matched for age, sex, education and, as far as possible, occupation. Results demonstrated significant differences between the two groups, with the SCI group being more anxious and depressed. However, psychological morbidity was not an inevitable consequence of SCI, with group means reflecting mild levels of depression and anxiety. No significant differences were found across time and no interactions between groups and time were detected. Implications for the treatment of SCI are discussed.

Long-term psychological outcomes in spinal cord injured persons: Results of a controlled trial using cognitive behavior therapy

OBJECTIVE Although there are many anecdotal reports that psychological intervention is effective in enhancing adjustment to spinal cord injury (SCI), there are little data to support this assertion. To date, reports of few longitudinal-based controlled trials that assessed psychological outcomes for SCI persons have been published. This study was conducted to determine long-term efficacy of cognitive behavior therapy during rehabilitation. DESIGN The study employed a nonrandomized controlled trial, and measures were taken on three occasions: before, immediately after, and 12 months after treatment. SETTING, OUTCOME MEASURES, AND INTERVENTION: Anxiety, depressive mood, and self-esteem were assessed in 28 SCI persons consecutively selected on admission to hospital, who participated in specialized group cognitive behavior therapy (CBT) during rehabilitation. CONTROLS The intervention groups responses on the measures were compared with a control group of 41 SCI persons who only received traditional rehabilitation services during their hospitalization. RESULTS There were no overall group differences on anxiety, depressive mood, and self-esteem, although there was a trend for the treatment group to have greater levels of improvement in depression scores across time in comparison to the control group. However, those in the treatment group who reported high levels of depressive mood before the CBT treatment were significantly less depressed 1 year after injury, compared to similar persons in the control group. CONCLUSIONS While it appears not everyone who experiences SCI needs CBT, at least in the hospital phase of their rehabilitation, those who report high levels of depressive mood benefited greatly from CBT.

The lifestyle appraisal questionnaire: A comprehensive assessment of health and stress

Abstract Lifestyle risk factors and perceived stress have been shown to have a significant impact on an individuals health. Interventions designed to minimise the negative effects of such risks which also reliably measure long-term health outcomes are therefore desirable. However, there is a lack of reliable and sensitive measures of lifestyle risks and stress. This paper presents initial research on the development of the Lifestyle Appraisal Questionnaire (LAQ), an instrument designed to assess lifestyle from a multifactorial perspective, that is, cumulative risks and perceived stress of life. Two samples were selected to test the LAQ. The first group was a randomly selected community sample. The second was a university sample of randomly selected staff. From the first group (n=600), the reliability, validity and factor structure were determined. From the second group (n=143), the clinical usefulness of the scale was demonstrated. Both groups provided adult norms. Implications of such a measure are disc...

A Cardiac Rehabilitation Program to Improve Psychosocial Outcomes of Women with Heart Disease

BACKGROUND AND AIMS Heart disease in women is characterised by greater disability and a higher rate of morbidity and early death after an acute coronary event compared with men. Women also have lower participation rates than men in cardiac rehabilitation. This study sought to describe development of a nurse-directed cardiac rehabilitation program tailored to the needs of women following an acute cardiac event to address their psychological and social needs. METHODS The Heart Awareness for Women program (HAFW) commenced in 2003 with phase I involving development of program elements and seeking validation through consumers and clinical experts. The program was then trialed in an 8-week program in a convenience sample of 6 women. Phase II applied the revised program using action research principles focusing on enabling clinical staff to implement the ongoing program. A total of 54 women participated in this phase, 48 of whom completed baseline questionnaires. A mixed-method evaluation, using questionnaires, interviews, and observation, assessed the impact of the intervention on psychological and social aspects of womens recovery following an acute coronary event. RESULTS Women welcomed the opportunity to discuss their individual stories, fears, and challenges and to derive support from contact with other women. Via health professional facilitation, women were able to develop strategies collectively to address risk factor modification and achieve optimal cardiovascular health. No statistically significant changes in depression, anxiety, stress, cardiac control, role integration, or perceived social support were found; however, descriptive and qualitative findings revealed decreases in anxiety and an increased sense of social support. CONCLUSIONS On the basis of this study, a cardiac rehabilitation program tailored to the needs of women appears to be feasible and acceptable. The efficacy of this intervention to improve health-related outcomes needs to be tested in a randomized, controlled trial.

Perceptions and Experiences of Heart Disease: A Literature Review and Identification of a Research Agenda in Older Women

Background:: Following diagnosis of heart disease women have poorer health related outcomes compared with men. Nursing science lacks well-evaluated interventions to address the specific rehabilitative needs of older women with heart disease. AIMS:: This paper seeks to inform the development of nursing intervention studies by a review of published studies on the experiences and rehabilitative needs of older women with heart disease. Methods:: The CINAHL, MEDLINE, FAMILY and PsychINFO databases were searched, identifying literature published from 1982 and written in English. Keywords used were women, old∗ (old, older) women, elderly women and: heart disease, heart failure, cardiac and rehabilitation. Hand searching of nursing and medical textbooks also occurred. These searches resulted in over 120 articles that met the criteria of describing experiences, perceptions, psychological responses and support rehabilitative needs of older women. Results:: Older women present with symptoms that are different from those derived from a male-dominated research agenda and further there is a paucity of data related to evaluation of interventions tailored to the needs of women. Key themes emerging from the literature review include not only that older women compared with men have a poorer prognosis and experience greater disability moreover they: (1) are at a higher risk of psychosocial distress; (2) have a greater need for instrumental support and social support; (3) have an altered perception of risk; and (4) demonstrate the need for specific rehabilitation programs, tailored to their needs. Conclusion:: Future research should develop and evaluate intervention studies that better meet the unique needs of older women with heart disease. Particular emphasis needs to be on psychosocial aspects, given evidence that identify these are major concerns for women.

The effectiveness of group psychological intervention in enhancing perceptions of control following spinal cord injury

Objective: This research investigated the effects of a structured psychological intervention, delivered during hospital rehabilitation, on the perceptions of control in people with spinal cord injury (SCI). Method: A longitudinal study was designed to assess perceptions of control (using an objective measure of locus of control) in SCI persons who participated in specialised group cognitive-behavioural therapy (CBT) during hospital rehabilitation. The treatment SCI groups responses on locus of control were compared with a control group of SCI persons who only received traditional rehabilitation services during their hospitalisation. Results and Conclusions: Mean locus of control scores were not high (i.e. external) for both groups and there were no overall group differences on locus of control responses across time in comparison to the control group. However, subjects in both groups who initially perceived life as externally controlled were extracted to form subgroups. The members of the subgroup who received CBT were significantly more likely to feel in control of themselves 2 years post injury compared to similar persons in the control group. Furthermore, an external locus of control was significantly but mildly associated with depressive mood 2 years after the injury. This research suggests that the provision of a structured psychological program in the rehabilitation stage will be beneficial for many SCI persons who feel that they have little control over their lives.

Improving the long-term adjustment of spinal cord injured persons.

Study Design: The study involved the long-term assessment of persons with spinal cord injury (SCI) who previously participated in a nonrandomized longitudinal controlled trial.Objectives: The objective was to report on the effectiveness of early psychological intervention in improving some aspects of adjustment to SCI 2 years post injury.Setting: The study was conducted in Sydney, Australia.Methods: Twenty-eight SCI persons who had participated in group Cognitive Behaviour Therapy (CBT) during hospital rehabilitation were assessed for drug usage, hospital re-admissions, relationships, perceived adjustment and social discrimination 2 years after treatment. The intervention groups responses on the measures were compared with a control group of 31 SCI persons who only received traditional rehabilitation services during their hospitalization.Results: Subjects in the treatment group experienced less hospital re-admissions, used less drugs and reported higher levels of adjustment compared to the control group. Relationships were stable for both groups and there were no suicides in either group up to 2 years. There were no differences in perceived social discrimination between the two groups.Conclusion: The study suggests the long-term adjustment for SCI persons is encouraging for the majority. However, the provision of group CBT for SCI persons appears to improve significantly some aspects of adjustment to the injury in the long-term.

The influence of spinal cord injury on coping styles and self-perceptions two years after the injury

This study is a two year follow-up of previous longitudinal research which investigated the effects of spinal cord injury (SCI) on perceptions of control, self-esteem and coping styles over the first year of SCI. Persons with SCI and a demographically matched able-bodied control group completed standardised questionnaires on four occasions over two years. The instruments included the Locus of Control of Behaviour Scale (LCB), Rosenbergs Self-Esteem Scale, and an adapted Mental Adjustment to Cancer Scale (MAC), which measures coping styles, including fighting spirit, helplessness/hopelessness and fatalism. Results obtained in the first year were replicated in the two year data, except for the LCB Scale. After one year, the SCI group were found to perceive their life to be externally controlled, to be lower in self-esteem, and have more helpless/hopeless and fatalistic attitudes than the controls. There were no differences in self esteem and coping styles after two years for the SCI group. However, locus of control fluctuated over the two years, though there was a trend for the SCI group to be more externally focussed. There were no significant interactions between group and time. Implications for the adjustment of SCI persons are discussed.

Challenges for professional care of advanced dementia.

Qualitative methodology based on action research identified challenges when caring for persons with advanced dementia, as perceived by key professional providers. Data collection was via five focus groups (total n = 24) and 20 follow-up individual interviews. Participants included palliative care, aged care and dementia specialist nurses, medical specialists from an area health service, residential aged care staff and general medical practitioners. Responses emphasized the need for improved knowledge and skills, and clearer policy. Concerns included accurate assessment, especially of pain, owing to the inability of people with advanced dementia to communicate their symptoms. Assessment, managing physical and behavioural symptoms, and communicating with family presented as further challenges. Conclusions are that the need for a palliative approach to care in advanced dementia should be recognized. Aged care staff can deliver palliative care to people with advanced dementia only if the staff receive relevant education and training beyond their generalist competencies.