The effect of self-selected complementary therapies on cancer patients' quality of life and symptom distress: A prospective cohort study in an integrative oncology setting.

OBJECTIVE: To examine the effectiveness of a multifaceted complementary therapies intervention, delivered in a systematic manner within an Australian public hospital setting, on quality of life and symptom distress outcomes for cancer patients. METHODS: Adults receiving treatment for any form of cancer were eligible to participate in this study. Self-referred participants were offered a course of six complementary therapy sessions. Measures were administered at baseline, and at the third and sixth visit. The primary outcomes were quality of life and symptom distress. Linear mixed models were used to assess change in the primary outcomes. RESULTS: In total, 1376 cancer patients participated in this study. The linear mixed models demonstrated that there were significant improvements in quality of life and significant reductions in symptom distress over six sessions. Body-based therapies demonstrated significantly superior improvement in quality of life over counselling, but no other differences between therapies were identified. Reduced symptom distress was not significantly associated with any particular type of therapy. CONCLUSION: A self-selected complementary therapies intervention, provided in an Australian public hospital by accredited therapists, for cancer patients significantly mproved quality of life and reduced symptom distress. The effect of this intervention on quality of life has particular salience, since cancer impacts on many areas of people's lives and impairs quality of life.

Staying just one step ahead: providing care for patients with motor neurone disease.

INTRODUCTION: There is limited information about the experiences and educational needs of health professionals who may be required to provide care for people with Motor Neurone Disease (MND) especially in the later stages of the disease. The aim of this study was to determine the experiences of, and need for, education of these health professionals. METHODS: Interviews and focus groups were conducted with 31 health professionals with some experience in providing palliative care for people with MND. Thematic content analysis was used to identify common themes. RESULTS: A key theme, Just One Step Ahead, emerged, that describes the central capability health professionals identified as necessary to help individuals plan and prepare for disease and lifestyle changes just before they arise. Two subthemes also emerged: Expertise in MND and Bespoke Communication. Expertise in MND described the required understanding of the disease and the particular individual's version of the disease to allow the health professional to plan, advise, support and anticipate the needs of the person living with MND. Bespoke Communication was the facility to tailor care messages sensitively and effectively to the range of people involved in care (patients, family, healthcare team members). CONCLUSIONS: Care of people with MND requires up-to-date expertise about the disease and skilled communication abilities to manage complexity and change. Timely and focused education and specialist MND support for care providers are essential to tailored and responsive care and a widely available education programme has been developed to address these needs.

Meeting breast cancer patients' information needs during radiotherapy: what can we do to improve the information and support that is currently provided?

Previous research has reported that patients require specific information relating to radiotherapy; however, these studies fail to describe patients' specific information needs over time. The aims of this study were to determine the specific information needs of breast cancer patients who are receiving radiotherapy and identify when patients prefer to receive specific information. Semi-structured interviews were conducted with 34 early breast cancer patients and 14 health professionals. Seventeen patients were interviewed after treatment completion, and 17 patients were interviewed on at least two occasions during their radiotherapy. Grounded theory and the constant comparative method were used to analyse the data. Three main categories emerged from the data: 'repertoire of information', 'amount of information relating specifically to radiotherapy' and'tailoring information to match patients' radiotherapy journeys'. Patients' information needs were identified, and key messages and strategies to inform patients were described. This paper identifies breast cancer patient's specific information needs during radiotherapy and shows that patients' information needs are highest during their first appointment with their radiation oncologist and at the time of their planning appointment. The findings presented will enable health professionals to develop and refine their approaches to patient education in radiotherapy.

Assessment of quality of life in lymphedema patients: validity and reliability of the Swedish version of the Lymphedema Quality of Life Inventory (LQOLI).

The Lymphedema Quality of Life Inventory (LQOLI) is an instrument developed for patients with different types of lymphedema. It contains physical, emotional, social, and practical dimensions and consists of 58 items, each with three sub items concerning life quality, daily life changes, and difficulties of changing and two items concerning life quality in general and in relation to lymphedema. The purpose of this study was to adapt the Australian LQOLI to Swedish conditions and to test it for clarity, face validity, content validity, construct validity, and reliability. Content and face validity was completed by experts (n=11) and patients with different types of lymphedema (n=16). For construct validation the SF-36 (n=63) was used. Test-retest reliability was evaluated with lymphedema patients (n=58) answering the questionnaire twice, within median 3 weeks. Three items were added in the Swedish version of LQOLI (SLQOLI). The kappa coefficients in test-retest for all items and sub items varied (range = 0.25-0.83). Construct validity showed moderate correlation with SF-36. The SLQOLI is adapted and valid, with moderate reliability, and it can be used in clinic to describe life quality for patients with lymphedema. In this study, 67% of the patients experienced an effect on life quality within the physical dimension and 54-58% within the emotional, social, and practical dimensions.

Palliative respite services using nursing staff reduces hospitalization of patients and improves acceptance among carers.

People caring for palliative patients at home identify respite care as a key need. However, caregiver concern over the skill level of respite care providers has been cited as a common barrier to uptake and satisfaction with respite services. This study implemented and evaluated an at-home palliative care respite service delivered by enrolled nurses, known by various names in the UK. It was found that the program reduced hospitalizations of palliative patients by 80% and potentially increased the likelihood that they would die at home.

The supportive and palliative care needs of Australian families of children who die from cancer.

OBJECTIVE: To identify the perceptions of parents of children who died from cancer regarding the palliative and supportive care they received in hospital and in community settings. METHOD: Face-to-face or telephone questionnaires. Setting Tertiary paediatric oncology centres in Western Australia, New South Wales, Queensland and Victoria. PARTICIPANTS: 69 parents. RESULTS: Parents indicated the need for clear and honest information about their child's condition and prognosis throughout the trajectory of illness. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. Parents preferred to care for their child at home wherever possible throughout the palliative care trajectory of their child's cancer and were well supported by immediate and extended family and friends. However, many families were affected emotionally and financially by the burden of caring for their child with incurable cancer. Families required financial and practical assistance with providing care from their child. Parents wanted and needed more practical resources and information to assist with the management of their child's nutrition and pain, as well as for the support of their other children. CONCLUSION: Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and should be linked and integrated with the treating hospital in collaboration with community services.

When the safety net of treatment has been removed: patients' unmet needs at the completion of treatment for haematological malignancies.

OBJECTIVE: To determine patients' information, emotional and support needs at the completion of treatment for a haematological malignancy. METHODS: A self-report questionnaire was mailed to 113 adult patients. RESULTS: Sixty-six questionnaires were returned. The most frequently endorsed patient needs related to care co-ordination and help to manage the fear of recurrence. The most frequently endorsed unmet needs included managing the fear of recurrence, the need for a case-manager and the need for communication between treating doctors. Predictors of unmet needs included younger patients (p=0.01), marital status (p=0.03) and employment (p=0.03). Almost two-thirds of patients (59%) reported they would have found it helpful to talk with a health care professional about their experience of diagnosis and treatment at the completion of treatment and endorsed significantly more need in the arenas of Quality of Life (p=0.03) and Emotional and Relationships (p=0.04). CONCLUSION: This study provides valuable data on haematological cancer patients' needs in the first 12 months of finishing treatment. It appears that many needs emerge or remain unresolved at this time. PRACTICE IMPLICATIONS: An opportunity for patients to talk with a health professional about making the transition from active treatment to extended survivorship may be helpful.

Translating theory into practice: using Action Research to introduce a coordinated approach to emotional care.

OBJECTIVE: This paper describes a translational project that explored the feasibility and effect of introducing a coordinated approach to emotional care. METHODS: The project was undertaken using Action Research on one ward at St John of God Hospital Subiaco, Western Australia. A senior Registered Nurse was appointed to provide the leadership and direction to staff regarding emotional care and an education program for staff was provided. The project was evaluated using both quantitative and qualitative data. RESULTS: Data demonstrated an increase in the patient's evaluation of emotional care, although levels were found to fluctuate throughout the project. Factors such as the emotional distress of the staff were hypothesised as impacting on the delivery of emotional care. CONCLUSION: The approach used in this project was found to be a useful method of improving emotional care. However, the data collected in this study revealed the complexity of emotional care delivery and the possible impact of a number of factors within the environment. PRACTICE IMPLICATIONS: Emotional care delivery can be improved by using a coordinated research-based educational approach led by a clinical champion. However, the impact of other factors within the hospital environment needs to be considered and more research is required.

Evaluation of a psycho-educational group programme for family caregivers in home-based palliative care.

BACKGROUND: Family caregivers are often responsible for providing significant support to relatives who require palliative care at home. However, evidence suggests that family caregivers have limited information, resources or support to prepare them for such a role. Furthermore, family caregiving can be associated with negative physical, financial and psychosocial outcomes. PURPOSE: This project sought to examine the utility of a group family caregiver psycho-educational programme focused on preparing primary family caregivers for the role of supporting a relative with advanced cancer at home. METHOD: The education programme consisted of three consecutive weekly sessions presented in a group format, conducted at six home-based palliative care services across metropolitan and regional Victoria (Australia). Participating caregivers were required to complete a set of self-report questionnaires measuring caregiver competence, preparedness, optimism, rewards, social support, burden and information needs, at three time points: commencement of the programme (T1), upon completion (T2) and 2 weeks later (T3). Caregivers were also asked to report on the relevance, acceptability and content of the programme, as well as any barriers to access. RESULTS: Sixteen education programmes were conducted, with 74 caregivers attending the first session. Forty-four caregivers completed all three data collection sets. Following the intervention, a significant positive effect was found for the following outcomes: preparedness for the caring role, caregiving competence, caregiving rewards and having information needs met from T1 to T2. These improvements were maintained at follow-up (T3). Feedback on the individual sessions and entire programme was favourable and the overwhelming majority of participants reported that the programme had a positive impact on their lives. CONCLUSIONS: This study demonstrated that a group education programme to prepare family caregivers for the role of supporting a dying relative at home was accessible, applicable and effective.

A qualitative investigation of the palliative care needs of terminally ill people who live alone.

This paper investigates the support needs of people living alone with a terminal illness from a client perspective. In depth, interviews were conducted with 11 clients from Silver Chain Hospice Care in Western Australia to capture their personal experiences of managing at home alone and to assess their physical, social and emotional needs. Findings provided useful insights with respect to many of the motivations, beliefs and wishes of individuals who endeavour to cope on their own with minimal assistance. The needs of these individuals are practical, emotional, physical and existential. At the heart of these concerns is a strong need to be independent and maintain a sense of dignity at end of life.

Endocrine and immune responses to resistance training in prostate cancer patients.

This study examined the effect of 20 weeks resistance training on a range of serum hormones and inflammatory markers at rest, and following acute bouts of exercise in prostate cancer patients undergoing androgen deprivation. Ten patients exercised twice weekly at high intensity for several upper and lower-body muscle groups. Neither testosterone nor prostate-specific antigen changed at rest or following an acute bout of exercise. However, serum growth hormone (GH), dehydroepiandrosterone (DHEA), interleukin-6, tumor necrosis factor-alpha and differential blood leukocyte counts increased (P < 0.05) following acute exercise. Resistance exercise does not appear to compromise testosterone suppression, and acute elevations in serum GH and DHEA may partly underlie improvements observed in physical function.

Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs.

Home-based palliative care services are facing increasing challenges in servicing the needs of clients who live alone and without a primary caregiver. The findings from the analysis of 721 services' records from three Australian states, and feedback from health professionals in interviews and postal surveys, demonstrated that there were aspects of being on one's own with a terminal illness and living at home that require a specialised approach and support. This study explored the issues of palliative care patients living alone, from a service provider perspective, and provided evidence-based information to assist with service planning. The study made recommendations to the Australian Department of Health and Ageing about services considered important in developing support structures for this growing population.

Critical review of complementary therapies in haemato-oncology.

There is evidence of the increasing use of complementary and alternative medicine by Australians diagnosed with cancer. Given the increasing desire of cancer patients to use complementary and alternative medicine, it is important that clinicians have a good understanding of the evidence available in this field. This critical review aims to provide an overview of the current evidence pertaining to a range of complementary therapies that are used in a supportive role in the treatment of cancer patients. Treatment methods considered are acupuncture, music therapy, massage and touch therapies and psychological interventions. The efficacy of these complementary therapies in terms of improvement in symptoms and quality of life is examined. Evidence that relates to an effect on immune function and survival is also investigated.

Adverse effects to quality of life arising from treatment can recover with intermittent androgen suppression in men with prostate cancer.

Health-related quality of life (HQOL) research is a means of broadening the assessment of treatment effects. This longitudinal study investigated the dynamic change to quality of life (QOL) and testosterone dependant physiology in men commencing an intermittent maximal androgen blockade program (IMAB). Two hundred and fifty men were accrued to the multi-centre study of IMAB (Flutamide 250 mg TDS, Leuprolide 22.5 mg depot) ceasing treatment after 9 months if PSA <4 ng/ml, and restarting when PSA >20 ng/ml. QOL was assessed every 3 months for 30 months using the EORTC QLQ-C30 and EORTC QLQ-PR25 module. Data completion for the whole study was 90%. At baseline, our cohort was less symptomatic and had better function than the EORTC reference cohort, which may be related to a shift in clinical practice with time. Testosterone suppression (AS) lead to a significant reduction in global HQOL and deterioration in most function and symptom scales. During the off period, there was a trend of progressive improvement in HQOL that paralleled testosterone recovery but was slower than the rate of deterioration during the treatment phase. Maximum recovery of HQOL occurred most frequently by months 9-12. Testosterone recovery was slower and less complete in older men, and lead to concomitant poorer HOQL recovery. Whilst the magnitude of mean change to scale scores was small, there was a consistent and simultaneous deterioration during maximal androgen blockade (MAB) and improvement during androgen recovery. Older men are more likely to show an impaired testosterone recovery, and this was paralleled by a slower HQOL recovery. Newer methods of analysis to describe results in a way that has meaning to the individual patient are warranted.

Writing therapy for the bereaved: evaluation of an intervention.

Bereavement is a risk factor for a wide range of well-documented negative outcomes. As such, a range of sensitive and appropriate interventions are needed to support people adjusting to their new roles and change in identity. Writing has proven to be useful for people adjusting to traumatic experiences. Translating experiences into language and constructing a coherent narrative of the event enables thoughts and feelings to be integrated, leading to a sense of resolution and less negative feelings associated with the experience. Using a writing therapy intervention tailored specifically for bereaved individuals in Western Australia, this study asked: "Does a writing therapy intervention reduce grief, lead to greater health and wellbeing and lead to greater self care for bereaved individuals?" The results indicate that for grief and General Health Questionnaire-30 (GHQ-30) scores there was an overall improvement for all participants regardless of whether participants received the intervention or not. The results for the effect of writing therapy on self-care demonstrate that there is a greater increase in self-care for the intervention group than for the control group; however, this trend does not reach statistical significance. Writing therapy offers a useful, cost-effective, and private way of supporting bereaved individuals who may not practice self-care. The main limitation of the current research is the low number of participants, which limits the generalizability of the results. Future research could be directed toward evaluating the intervention for recently bereaved people or those identified by screening as being particularly vulnerable.

Effect of postural supports on neuromotor function in very preterm infants to term equivalent age.

OBJECTIVE: To determine the effect of a postural support nappy and/or a postural support roll on neuromotor function in very preterm infants when nursed prone to term equivalent age. METHODS: A randomized observer blind controlled trial of 123 very preterm infants was conducted in the neonatal intensive care unit of the sole tertiary referral centre in Western Australia. Infants were stratified by gestational age (< 29 weeks or 29-30 weeks), then randomized into one of three intervention groups: postural support nappy, postural support nappy and postural support roll, or disposable nappy and postural support roll. Interventions started when infants were stable and ceased when routine side-lying commenced. Measurements of shoulder and hip posture were performed pre-intervention, 5 weeks post-intervention and term postmenstrual age. RESULTS: Infants nursed with a postural support roll and a postural support nappy demonstrated improved hip posture to term equivalent age compared with infants nursed with either a postural support roll only, or a postural support nappy only. Infants nursed with a postural support roll either with or without a postural support nappy demonstrated improved shoulder posture to term equivalent age. CONCLUSIONS: Combined use of a postural support roll and a postural support nappy while very preterm infants are nursed prone improves hip posture up to term postmenstrual age. Use of a postural support roll improves shoulder posture up to term equivalent age.

Factors influencing women's decisions for choice of surgery for Stage I and Stage II breast cancer in Western Australia.

BACKGROUND: Internal and external factors have been reported to influence decision-making by women for breast cancer surgery. AIM OF THE STUDY: The aim of the study was to describe the factors those women with Stage I or Stage II breast cancer, perceived to be important when selecting either modified radical mastectomy or breast conserving treatment. DESIGN/METHOD: A descriptive correlational study was conducted. A consecutive sample of women with a diagnosis of breast cancer during a 6-month period was selected from the Health Department of Western Australia Cancer Registry. RESULTS: Women who had breast conserving treatment rated the surgeon's preference as a more important factor in decision-making than women who had modified radical mastectomy. The lack of difference in long-term survival between the types of surgery was also a more important influence on decision-making for the breast conserving treatment group compared with women who had received modified radical mastectomy. Women in rural areas tended to choose modified radical mastectomy rather than breast conserving treatment. The surgeon, family and general practitioner were important sources of information. A significant association was found between women's involvement in decision-making and their use of a general practitioner as an information source. Many women wanted the decision about surgery to be entirely their own; the breast conserving treatment group preferred a more active role in decision-making compared with those who chose modified radical mastectomy. Most women had participated in the decision-making process as much as they wished, had enough time in which to make their decisions and had received sufficient information. A correlation between adequacy of information and sufficient time for decision-making was found. CONCLUSION: Findings may be useful to nurses and other health professionals who endeavour to provide adequate information and support to women during their initial treatment decision-making experience.

Ongoing relationships with a personal focus: mothers' perceptions of birth centre versus hospital care.

OBJECTIVE: to describe women's perceptions of care in Western Australian birth centres following a previous hospital birth. DESIGN, SETTING AND PARTICIPANTS: an exploratory study was undertaken to examine the care experiences of women from three Western Australian birth centres. Data were obtained from 17 women whose interviews were audio-recorded and transcribed. The research focused upon women's perceptions of their recent birth centre care as compared to previous hospital care during childbirth. FINDINGS: four key themes emerged from the analysis: 'beliefs about pregnancy and birth', 'nature of the care relationship', 'care interactions' and 'care structures'. The themes of 'care interactions' and 'care structures' will be presented in this paper. Care interactions refer to women's opportunities to develop rapport with their carers. Care structures involved the organisational framework in which care was delivered. The first two themes of 'beliefs about pregnancy and birth' and the 'nature of the care relationship' were discussed in a previous paper. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: differences in opportunities for care interactions and care structures were revealed between birth centre and hospital settings. Ongoing, cumulative contacts with midwives in the birth-centre setting were strongly supported by women as encouraging the development of rapport and perception of 'being known' as an individual. Additionally, care structures tailored to women were advocated over the systematised, fragmented care found in hospital settings.

Normality and collaboration: mothers' perceptions of birth centre versus hospital care.

OBJECTIVE: to describe women's perceptions of care in Western Australian birth centres following a previous hospital birth. DESIGN, SETTING AND PARTICIPANTS: an exploratory design was used to study the care experiences of 17 women recruited from three Western Australian birth centres. Data were obtained from in-depth interviews that explored women's perceptions of their care in both the birth centre and hospital context. FINDINGS: four key themes emerged from the analysis: 'beliefs about pregnancy and birth', 'nature of the care relationship', 'care interactions', and 'care structures'. The themes of 'beliefs about pregnancy and birth' and 'nature of the care relationship' are discussed in this paper. Beliefs about pregnancy and birth refer to the philosophical underpinnings of pregnancy and birth held by women and their carers. Nature of the care relationship identifies women's perceptions of their relationship with health professionals. Care interactions and care structures will be described in a subsequent paper. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The women's comments suggested differences in philosophy between hospital and birth-centre settings. The philosophy and beliefs of caregivers was an important component of the care experience. Women valued the normality of the birth-centre approach and the opportunity to experience the birth of their child with collaborative support from a midwife.

Priorities for adult cancer nursing research: a West Australian replication.

Two Delphi surveys have been conducted during the past 20 years to identify cancer nursing research priorities; one in the United States and one in Canada. Sir Charles Gairdner Hospital, the State Cancer Referral Centre in Western Australia, undertook a replication of this Delphi survey to identify nursing research priorities for adult cancer nursing. The aim of this replication was to identify possible changes in priorities and account for cultural difference in the healthcare systems. A total of 45 responses were received from the first Delphi round and 30 from the second. The top ten priorities identified by this sample were different from those identified in prior studies. The top ranked research topic was "What strategies would be most helpful in allowing nurses time to provide emotional support to cancer patients and carers?" These results may stimulate discussion and re-assessment of research priorities in other adult cancer care settings.