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Biomedical subjects

Linda J Kristjanson

Publications and source records attributed to Linda J Kristjanson.

At least 19 recordsLinked to original sources
PubMed2006

Personality, neuroticism, and coping towards the end of life.

The influence of personality characteristics on how patients cope with various challenges at the end of life has not been extensively studied. In order to examine the association between end-of-life experience and neuroticism (defined within the personality literature as a trait tendency to experience psychological distress), a measure of neuroticism was administered to a cohort of dying cancer patients. Various other measures of physical, psychological, and existential distress were also measured to explore their possible connection to patient personality style. The personality characteristic neuroticism demonstrated a significant relationship with several end-of-life sources of distress, including depression, anxiety, sense of dignity, quality of life (rating and satisfaction), hopelessness, concentration, and outlook on the future. Neuroticism appears to have a significant association with the dying experience. This association is expressed across the psychological, existential and, to a lesser extent, physical and social domains of end-of-life distress. This may help clinicians identify vulnerable individuals who are most likely to have poorer adjustments and may benefit from earlier targeted interventional approaches. Exploring the relationship between various facets of personality and end-of-life distress, and mapping this information against optimal therapeutic responses, remains the challenge for future research broaching this intriguing and largely ignored area of palliative care.

Adaptation, Psychological↗
PubMed2006

Desire for hastened death in patients with advanced disease and the evidence base of clinical guidelines: a systematic review.

PURPOSE: Patients' desire for hastened death within the context of advanced disease and palliative care is a controversial topic, frequently discussed in the international literature. Much of the discussion has focused on opinion and debate about ethical matters related to hastened death. Not many research studies seem to have specifically targeted why palliative care patients may desire hastened death, and few have focused on clinical guidelines for responding to such requests. METHODS: Using a systematic literature review process, we evaluated the research evidence related to the reasons patients express a desire for a hastened death, and the quality of clinical guidelines in this area. RESULTS: Thirty-five research studies met the inclusion criteria related to reasons associated with a desire for hastened death. The factors associated with a desire to die were often complex and multifactorial; however, psychological, existential and social reasons seem to be more prominent than those directly related to physical symptoms, such as pain. Much of the evidence supporting the reasons for these statements is based on: (a) patients' perceptions of how they may feel in the future, and (b) health professionals' and families' interpretations of why desire to die statements may have been made. Several publications provided expert opinion for responding to requests for physician-assisted suicide and euthanasia. In keeping with this limited research base, there is a lack of evidence-based guidelines for clinical care that addresses the desire to die among terminally ill patients. Most literature has focused on discipline specific responses, with minimal exploration of how clinicians might respond initially to a statement from a patient regarding a desire to die. CONCLUSIONS: In order to advance understanding of the complex issue of desire for hastened death in the context of palliative care, research should focus on studies with patients who have actually made a desire to die statement and the development of guidelines to help health professionals respond. Direction for research in this area is described.

Attitude to Death↗
PubMed2006

Responding to desire to die statements from patients with advanced disease: recommendations for health professionals.

It is not uncommon for patients with advanced incurable disease to express a desire to hasten their death. Health professionals often have difficulty responding to such statements, and find it challenging to ascertain why these statements are made. Health professionals may struggle to determine whether a 'desire to die' statement (DTDS) is about a request for hastened death, a sign of psychosocial distress, or merely a passing comment that is not intended to be heard literally as a death wish. Given the lack of guidelines to assist health professionals with this issue, we have prepared multidisciplinary recommendations for responding to a DTDS, underpinned by key principles of therapeutic communication and a systematic review of empirical literature. Where the relevant literature was lacking, the recommendations were drafted by the authors (clinicians and/ or academics from the following disciplines: nursing, medicine, psychiatry, psychology, sociology, aged care and theology), based on their expert opinion. Multiple drafts of the recommendations were circulated to the authors for refinement until consensus was reached. Strategies for advancing the evidence base for the maturation of guidelines in this area are offered.

Attitude of Health Personnel↗
PubMed2006

Would people with Parkinson's disease benefit from palliative care?

Parkinson's disease (PD) is a chronic, progressive, degenerative disorder of the nervous system, causing substantial morbidity and has the capacity to shorten life. People with PD and their families can find the disease devastating. Nevertheless, this population of patients is not usually considered a group to be supported by palliative care specialists. But the nature of the illness and the challenges of managing its many physical and psychological effects raises questions about the potential benefits of a palliative care approach. The purpose of this project was to describe the experience of PD and consider the relevance of palliative care for this population. Semi-structured interviews were conducted with eight people with PD, 21 family caregivers and six health professionals. Five themes were developed from the data analysis: (1) emotional impact of diagnosis; (2) staying connected; (3) enduring financial hardship; (4) managing physical challenges; and (5) finding help for advanced stages. These data revealed that people with PD and family caregivers are confronted with similar issues to people with typical palliative care diagnoses, such as advanced cancer, and that a palliative approach may be helpful in the care of people with PD and their families.

Adaptation, Psychological↗
PubMed2006

Resistance training and reduction of treatment side effects in prostate cancer patients.

PURPOSE: To examine the effect of progressive resistance training on muscle function, functional performance, balance, body composition, and muscle thickness in men receiving androgen deprivation for prostate cancer. METHODS: Ten men aged 59-82 yr on androgen deprivation for localized prostate cancer undertook progressive resistance training for 20 wk at 6- to 12-repetition maximum (RM) for 12 upper- and lower-body exercises in a university exercise rehabilitation clinic. Outcome measures included muscle strength and muscle endurance for the upper and lower body, functional performance (repeated chair rise, usual and fast 6-m walk, 6-m backwards walk, stair climb, and 400-m walk time), and balance by sensory organization test. Body composition was measured by dual-energy x-ray absorptiometry and muscle thickness at four anatomical sites by B-mode ultrasound. Blood samples were assessed for prostate specific antigen (PSA), testosterone, growth hormone (GH), cortisol, and hemoglobin. RESULTS: Muscle strength (chest press, 40.5%; seated row, 41.9%; leg press, 96.3%; P < 0.001) and muscle endurance (chest press, 114.9%; leg press, 167.1%; P < 0.001) increased significantly after training. Significant improvement (P < 0.05) occurred in the 6-m usual walk (14.1%), 6-m backwards walk (22.3%), chair rise (26.8%), stair climbing (10.4%), 400-m walk (7.4%), and balance (7.8%). Muscle thickness increased (P < 0.05) by 15.7% at the quadriceps site. Whole-body lean mass was preserved with no change in fat mass. There were no significant changes in PSA, testosterone, GH, cortisol, or hemoglobin. CONCLUSIONS: Progressive resistance exercise has beneficial effects on muscle strength, functional performance and balance in older men receiving androgen deprivation for prostate cancer and should be considered to preserve body composition and reduce treatment side effects.

Aged↗
PubMed2006

Supportive and palliative care needs identified by multiple sclerosis patients and their families.

AIM: To identify the supportive needs of individuals with multiple sclerosis (MS) and their families. DESIGN, SAMPLE AND METHOD: In-depth interviews were carried out with people living with MS in the community, their family members and health professionals. The data were transcribed verbatim and recurring themes identified. FINDINGS: The analysis of interviews revealed four themes: disbelief and devastation; losses and forced life choices; tracking down services and information; and sadness and relief. CONCLUSION: Given the duration, range of symptoms and distress often associated with MS, the findings of this research raise the important question of the role of palliative services in supporting the person with MS and his/her family.

Activities of Daily Living↗
PubMed2006

Palliative care and support for people with neurodegenerative conditions and their carers.

AIM: to identify and compare the needs for supportive care/palliative care services of people in Australia with Motor Neurone Disease (MND), Multiple Sclerosis (MS), Huntington's Disease (HD) and Parkinson's Disease (PD) and the needs of their carers. DESIGN: national, descriptive survey of service use and support needs for 503 patients and 373 carers. Patients and carers were recruited from the databases of the disease associations in three Australian states. Patients were excluded if recently diagnosed or too sick or disabled to complete the survey. This was a specification of the ethics committee overseeing this project. FINDINGS: the MND and HD groups had the greatest needs for support and appeared most receptive to a palliative approach. The MS group was least likely to have a carer and more likely to live alone. HD and PD groups had the highest rates of anxiety and HD groups had the highest rate of depression. CONCLUSIONS: patients and carers who received more tailored services and more palliative care services were the most satisfied. Therefore, results highlight the need for tailored and flexible models of care for these groups with unique care requirements.

Activities of Daily Living↗
PubMed2006

Predicting family caregiver psychosocial functioning in palliative care.

BACKGROUND: Health professionals are expected to support family caregivers of patients requiring palliative care. However, there is a dearth of empirical evidence to help clinicians identify caregivers who might be at risk of poor psychosocial functioning. PURPOSE: This secondary analysis of baseline data from a larger study sought to determine if it was possible to predict the psychosocial functioning of family caregivers who were supporting a relative with advanced incurable cancer. METHOD: Data from 35 primary family caregivers obtained at the start of home-based palliative care services and five weeks later was used in the analysis. Instruments to measure caregiver preparedness, competence, mastery, social support, anxiety, and self-efficacy were used. RESULTS: Cluster and logistic analyses revealed that self-reported "anxiety" and "competence" subscale total scores at time of commencement of home-based palliative care services were associated with caregivers at risk of lower levels of psychosocial functioning five weeks later. CONCLUSIONS: This study suggests that it may be possible to identify family caregivers who are at risk for poorer psychosocial functioning. However, replication in a larger sample is required before this screening approach can be recommended for clinical use.

Adaptation, Psychological↗
PubMed2006

Are supportive services meeting the needs of Australians with neurodegenerative conditions and their families?

OBJECTIVE: To identify the needs for supportive care/palliative care services of people in Australia with four neurodegenerative disorders--motor neurone disease, multiple sclerosis, Parkinson's disease, Huntington's disease--and the needs of their families; and to determine the extent to which existing supportive and palliative care services models meet these needs. DESIGN: A mailed self-administered questionnaire to individuals with the four neurodegenerative diseases and their carers, in Western Australia, Victoria, and Queensland, using stratified proportional sampling from membership lists of the disease associations. PARTICIPANTS: A total of 503 patients and 373 carers responded, representing a response rate of 25.6% and 19.0%, respectively. Exclusion criteria included those who had been recently diagnosed, and those too sick or disabled to participate. RESULTS: As patient dependency increased and more support was needed, both patients and carers exhibited higher distress symptoms and a poorer quality of life. Those who received more tailored services and more palliative care services were the most satisfied. The results highlighted the need for tailored and flexible models of care for these groups with unique care requirements. CONCLUSIONS: This is the first empirical evidence of the needs and services used by these patient groups in Australia, and will form the basis for future developments of palliative and supportive care services for people with these four neurological conditions.

Activities of Daily Living↗
PubMed2005

Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life.

PURPOSE: This study examined a novel intervention, dignity therapy, designed to address psychosocial and existential distress among terminally ill patients. Dignity therapy invites patients to discuss issues that matter most or that they would most want remembered. Sessions are transcribed and edited, with a returned final version that they can bequeath to a friend or family member. The objective of this study was to establish the feasibility of dignity therapy and determine its impact on various measures of psychosocial and existential distress. PATIENTS AND METHODS: Terminally ill inpatients and those receiving home-based palliative care services in Winnipeg, Canada, and Perth, Australia, were asked to complete pre- and post-intervention measures of sense of dignity, depression, suffering, and hopelessness; sense of purpose, sense of meaning, desire for death, will to live, and suicidality; and a post-intervention satisfaction survey. RESULTS: Ninety-one percent of participants reported being satisfied with dignity therapy; 76% reported a heightened sense of dignity; 68% reported an increased sense of purpose; 67% reported a heightened sense of meaning; 47% reported an increased will to live; and 81% reported that it had been or would be of help to their family. Post-intervention measures of suffering showed significant improvement (P = .023) and reduced depressive symptoms (P = .05). Finding dignity therapy helpful to their family correlated with life feeling more meaningful (r = 0.480; P = .000) and having a sense of purpose (r = 0.562; P = .000), accompanied by a lessened sense of suffering (r = 0.327; P = .001) and increased will to live (r = 0.387; P = .000). CONCLUSION: Dignity therapy shows promise as a novel therapeutic intervention for suffering and distress at the end of life.

Adaptation, Psychological↗
PubMed2005

Comparison of plain ice and flavoured ice for preventing oral mucositis associated with the use of 5 fluorouracil.

AIMS AND OBJECTIVES: The study aimed to compare the use of plain ice, flavoured ice and standard care, to evaluate the effect on mucositis and to determine patients' perceptions of the two forms of oral cryotherapy. BACKGROUND: Despite evidence that oral cryotherapy is useful in preventing mucositis in patients receiving 5-fluorouracil, concerns have been expressed about its clinical utility, due to potential side effects and negative perceptions. DESIGN: A randomized, controlled, crossover trial was conducted in the outpatient chemotherapy department of an acute care teaching hospital in Perth, Western Australia. Patients were randomized to receive each of three interventions across three cycles of chemotherapy: standard care alone; standard care plus plain ice; and standard care plus flavoured ice. METHODS: Oral mucositis was assessed by nurses prior to each of the three chemotherapy cycles and 15 days after each intervention. Two assessment tools were used, the Oral Assessment Guide, and the Western Consortium Cancer Nursing Research Scale. Participants completed a questionnaire to determine their comfort and satisfaction with oral cryotherapy, as well as factors affecting compliance. RESULTS: Findings from 67 patients revealed that when participants used standard care alone, they were significantly more likely to experience symptoms of mucositis than when they used either plain or flavoured ice. Odds ratios were at least threefold higher for standard care alone, varying according to the instrument used. The two main concerns reported were the taste of flavoured ice and the time required to complete the cryotherapy interventions. Side effects such as nausea, sensitivity and headache were reported more frequently for flavoured ice (n = 11) compared with plain ice (n = 5) and standard care (n = 1). CONCLUSIONS: Both forms of oral cryotherapy were effective in reducing the severity of oral mucositis after chemotherapy and were more effective than standard care alone. Flavoured ice was associated with the highest frequency of side effects. RELEVANCE TO CLINICAL PRACTICE: The benefits of cryotherapy appear to outweigh the problems in this sample of patients. The intervention should be tailored to individual patients, based on preferences for plain versus flavoured ice and small chips vs. larger blocks. Unsweetened frozen fruit juices should be evaluated. Time constraints could be addressed by providing transportable containers of ice.

Antimetabolites, Antineoplastic↗
PubMed2005

Measuring symptom distress among frail elders capable of providing self reports.

This study aimed to develop a valid and reliable method of measuring symptom distress in frail elderly people capable of providing self reports. We tested a tool used in palliative care settings with 46 elders in residential aged care, refined the tool, and tested the new version with 48 additional elders. Items assessed the prevalence and severity of distress attributed to nausea; pain; insomnia; fatigue; and breathing, bowel and appetite problems in the first phase, and pain; insomnia; fatigue; and breathing, bowel, and bladder problems in the second phase. Participants rated symptom distress on a 10-point scale over 5 days. Internal consistency reliability coefficients for the revised tool ranged from 0.50 to 0.64. Concurrent validity with an established measure of well-being was demonstrated. Further research will assess stability. The tool provides a valid overview of symptom distress in frail aged people able to provide self reports.

Aged↗
PubMed2005

Caregiving for the terminally ill: at what cost?

This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.

Caregivers↗
PubMed2005

Challenging the framework for evidence in palliative care research.

This paper examines the debate about best evidence within the public health literature and proposes that similar arguments and concerns exist with respect to use of current evidence-based approaches to implementing research and evaluating the literature in palliative care. Whilst randomized controlled trials (RCTs) remain the gold standard and are appropriate in many instances of palliative care research, there is a need for an alternate research design framework that incorporates contextual and compositional effects pertinent to palliative care research. A framework, entitled Equity-Based Evidence, is discussed as an approach to evidence-based knowledge development in palliative care.

Evidence-Based Medicine↗
PubMed2005

Evaluation of the Bereavement Risk Index (BRI): a community hospice care protocol.

AIM: to test the validity, reliability and feasibility of using a modified version of Parkes' (1993) Bereavement Risk Index (BRI) and bereavement support protocol in an Australian home hospice care setting. In addition, the study aimed to explore what types of family members are most likely to experience a more difficult grief reaction. DESIGN: a prospective, descriptive study was used. One hundred and fifty bereaved family members participated. Bereaved family members were classified as high, medium or low risk and received a structured bereavement support protocol based on their level of risk as measured by the BRI. FINDINGS: results indicated that a shorter 4-item version of the BRI was more internally consistent than the longer version and demonstrated good predictive validity when correlated with outcome measures at 3 months following the patient's death. CONCLUSION: the modified 4-item BRI demonstrated acceptable reliability and validity and was brief and simple to use. Nurses were able to use the instrument with minimal training and were able to adhere to a matched bereavement support protocol.

Adjustment Disorders↗